I went to visit my Mother today at Maplewood Care Center, her nursing home. It’s hard to believe she has been there since 2001, and that she asked to move into the nursing home. Who would have thought? Surely not me, Mom was always going to live with us. Nine years in the nursing home has been an incredible journey of friendship, love, and awakening. Never in my wildest dreams would I have imagined my Mother’s path would change my career and my way of life, but it did and I can’t thank her enough for what she has taught me through her illness.
Today when I went to visit Mom it was just prior to supper time. I decided to pick up a Hot Fudge Sundae from Mc Donald’s for her anyways. She loves her Sundaes from Mc Donald’s chipped teeth and all. As I scooped the ice cream with the black plastic spoon that came with the sundae, I was anticipating Mom’s smile once her lips felt the cold. Instead, Mom’s lips popped open and closed around the spoon. I gently pulled the spoon out from the lips that trapped it as the ice cream melted in her mouth. My wrist soon turned to scoop another serving of hot fudge, and I saw Mom winkle her face like crisp dollar bill being scrunched in a powerful hand. Today It was evident the cold was causing her pain, yet she wanted more. I guess the fudge out weighted the pain, for today anyways.
After dessert was gone we went onto the main course. Chow mien, peas and carrots, a whipped fruit salad, all per aide. The baby food texture does nothing for my pallet, but it works well for Mom and she doesn’t seem to mind. Who am I to complain anyways, especially when I know she can’t chew with her dilapidated teeth. As I chatted with Mom and the staff I noticed one of my favorite people was missing from the dining room.
“Where’s Lillian?” I asked.
“Oh she passed about two weeks ago.” One of the staff said in a soft compassionate voice. My heart sunk to my toes. I hadn’t seen Lillian in the past month between being out of town and visiting Mom later at night when she was in her room. I felt horrible I hadn’t looked for Lillian when I was there. My mind raced knowing there was no way of going back in time. I will miss Lillian, she made my heart smile.
Lillian had befriended my Mother, watching and checking up on her throughout the years. When I would come to visit Mom, Lillian would scurry over, grab my hand, look deep into my eyes, and share stories with me. Her soft loving smile positioned on her aged and wrinkled face was one of my favorite things to see. Some days Lillian would sit and visit with Mom and me, other times she thought I was her daughter. On these occasions she would grab my hand, lead me off to a private setting where we could sit next to each other holding hands and share stories uninterrupted. Lillian’s crystal blue eyes could calm a tornado and her soft smile framed a strong and amazing woman who was a gift to know. It was just in the last year Lillian started to fail physically losing her balance; needing a walker; which many times she would forget was hers. Lillian was the elder, the wise one on the floor loving and caring for those around her until the day she died. If I’m not mistaken, she recently turned 104 years old. I would have loved to have met her family, but it’s not likely now. I will miss her beautiful crystal blues eyes, her soft fail hands that would reach for mine, and her compassionate voice like that of an angel.
Losing Lillian has made me realize, Mom could go any time. Mentally, I’ve known this, but the loss of Lillian made the thought sink into every pore of my being. One day, there may be no reason to go to the nursing home. Mom will not be waiting for me. She will not surprise me with subtle facial expressions, or a goofy comment, or a little giggle that lightens my spirit. What in the world will I do when the time comes for Mom to pass?
I know many think I should be relieved as I am released from this “Caregiver Role.” They view this journey I’ve been on with my Mother as a burden. But truth be told, I will deeply miss her. I will miss that shell of a body that is all many people see. For me there is so much more to Mom than her exterior looks. I guess I see Alzheimer’s disease like peeling an onion. There are many layers and like the heart of the onion it’s always in the middle and never dies first.
This past week I’ve been up at our family cabin relaxing and working on some projects for my speaking business. While up here I went to visit Alan, a dear family friend of forty years. He is now living in a nursing home in Aitkin, Minnesota. I believe my story about my visit with Alan is an important one about aging and illness; and hopefully one you will relate to.
As I entered Aitkin Health Services, I was immediately impressed with the community. Friendly staff, an activity room filled with engaged people; clean bright, and beautiful. As I maneuvered my way to Alan’s room, I found myself approaching a large garden area. This was the central area for his community. I felt like I was outdoors and almost double checked, but I knew I had not left the building. Several doors were spread around the perimeter of the garden space, each a door leading to a resident’s room.
As I approached the door to Alan’s room, I noticed it actually led to two large rooms. I peered in each. I was sure the man in the room to the left was not Alan, but I wasn’t so sure the man in the room to the right was him either. He looked different from what I remembered.
From the doorway the small pale man did not look like Alan, but I decided to check as the name plate said it was his room. As I walked in, I announced myself and I realized I had “FREEZE FRAMED” Alan in time. Freeze Framing is a term I use when speaking and training. Freeze Framing occurs when we take a snap shot of someone’s life and choice to remember them in a certain way, usually how they “used to be.” Typically, it is picture in our mind when we feel the person was active and vital. Often, it is in great contrast from what is actually before us when someone is ill or dying.
In my mind, I had “Freeze Framed” Alan as an active man, quiet in nature, and short in stature. He was an icon in his time. Everyone knew Alan. I remembered this farmer and resort owner with a deep golden tan, piercing blue eyes, and a gentle smile that melted my heart every time I saw him. I remembered this man and his wife Marv sharing stories of their travels. I remembered all of the pictures and mementos from their trips.
I remembered both Al and Marv in their peak of life – retired, full of zest; yet loving and compassionate. They were tremendous friends of mine even though some may have thought it strange with our age difference. I felt like they were part of my family and I was part of theirs. Al and Marv never had children and it was too bad, as they would have made great parents.
As I walked closer, I saw a fragile man hooked up to oxygen, lying in bed curled up like a baby. He was pale in color, with eyes closed, and he was lying peacefully. What had happened to my strong, helpful, resourceful friend? It was at that point I realized Alan had been like a grandfather to me. A grandpa I never had growing up. Forty years of stories and hugs, love and laughter.
I pulled a chair up next to his bed and told him who I was, and then I leaned in for a hug and kiss. Alan’s eyes slowly opened, and I saw those gorgeous baby blues as he looked into my eyes. He puckered up for our kiss just like old times. I sat down and held his hand and we talked for over an hour.
I was amazed and humbled how this fragile man came to life in my presence. What a gift it was for me to spend time with this wonderful man who meant so much to me over the years. What a gift it was to connect with an old friend on such a deep level as we chatted. I gave him the rundown on everyone in my family and asked about his.
I told Alan all the things I remembered about him and his wife Marv. I told him how special and loved he was not only by me but my family and others. What a generous couple he and Marv were. How much it meant to my parents when they sold the land where our cabin now sits, to them on a contract for deed as my folks couldn’t afford to buy it any other way. I reminded him of the others he and Marv had helped over the years. As I talked to Alan, he laid in bed beaming with pride. I can only imagine how nice it would be to have someone tell you how much they love you and valued you in their life. It’s sad as a society we don’t share these things more often with the important people in our lives.
Alan then told me, “I always thought you were pretty special too.” My heart melted once again with the love I hold for this man. He told me he remembered meeting me for the first time when I was six. I thought I was about ten or eleven, but he might be right. Who knows and who cares? I was so touched he remembered me and our special times together. He told me he was 97 years old now and he had been pretty sick last month with the flu. Alan told me he wasn’t sure how much longer he really had. He told me had that “old person’s disease.” I asked if he meant Alzheimer’s and he said “yes.” As he talked his eyes were filled with love and he was flashing that beautiful gentle smile at me.
Alan and I talked about Marv and their life together. He informed me she passed. I was aware of that. Marv had died many years ago. Prior to her passing I would stop in and visit her in the nursing home when I would run into town when I was at the lake.
Marv reminded me of my Great Aunt Margie. Marv was a home spun farmer’s wife. She always had something freshly baked when I would swing by to visit. I told Alan how I remembered their spiral staircase and how I was so enchanted by it when I was a child. I loved going up and down it. I had never seen a spiral staircase before. They would take me around the house and show me the different things they bought when they traveled, and I couldn’t wait to hop on those steps. I loved spending time with the two of them.
For a brief moment Alan and I sat in silence holding hands. It was at this time I sensed Marv sitting in Alan’s recliner next to his bed and I told Alan I get these weird sensations sometimes. I explained Marv was here with him, with us. I asked Alan if his ear ever tickles. He giggled and said “yes.” I told him that was Marv letting him know she was around. He continued to giggle softly through his smiling lips and said, “I always wondered where she was.” His eye sparkled with joy and brought a tear to my own eyes.
It was at that moment I felt a need to grab my purse and pull out one of my business cards that has the tool “Your Memory Chip” on the inside of it. I usually use these cards when working with caregivers (families and professionals) as it helps them focus on their loved one. Today I found a new use for the card. I was going to fill it out and give it Alan as a remembrance of our special time together today, of our precious connection over the years. So. this is roughly what I wrote down.
I wrote down that I love him. I wrote that I want him to be safe, happy, and pain-free. I wrote all the things I always want to remember about him: His crystal blue eyes, his golden tan, his soft gentle smile, his kindness and compassion. I wanted to remember him driving his riding lawn mower or four-wheeler as he did chores or just went around visiting people. His hugs, his friendship, and love…
There is room on “Your Memory Chip” for a photo, but I didn’t have one of Alan with me, so I decided to take a picture of him on my phone. The first picture he was closed lipped, so I asked him to give me a big smile and to show those pearly whites. He posed and I took the picture. It made me giggle as his smile was forced, just like any other time over the years I tried to get him to give me a big smile. I wish I had a picture of him as we were talking today: peaceful, quiet, happy with those blue eyes shining and his soft gentle smile that exuded love with a childish excitement.
As I gave Alan my business card, I explained the Memory Chip inside. I read to him what I had written in it. I told him I wanted him to give him something so he could remember our visit. I watched him take the card and hold it so gently yet tight. He was not about to let it go. He had told me earlier his eyes weren’t so good any more but that didn’t stop him from looking at the card thoroughly. He appeared to be trying to read each side and then opened it up to look over my writing inside and then did it all over again about three times. He appeared pleased and it gave me great joy knowing he liked this little memento just between us. This is the picture of Alan I now Freeze Frame in my mind.
I hope by sharing this story with you, that you too may take time to connect with your family and friends who are ill or aging. Those people in your life who aren’t who and what they used to be, and you have “Freeze Framed” them in order to be comfortable with the memory of them.
Please know that caring for someone is not about your comfort but theirs. Remember you can give them great joy by sharing your thoughts, your love, and your stories with them, but I can’t even begin to put into words what a gift you will receive back from them. Try it for yourself and then write me back and tell me what your experience was like.
If you would like to get a copy of “Your Memory Chip,” for yourself email Lori La Bey at Lori@AlzheimersSpeaks.com and you can go here to learn more on Your Memory Chip at
Alzheimer’s Disease – Spa Day at the VOA
Lori La Bey of Senior Lifestyle Trends
[youtube=http://www.youtube.com/watch?v=cNoG3GYi9uI&hl=en_US&fs=1&color1=0x5d1719&color2=0xcd311b&border=1]
The Infectious Visit – As My Mind Spins
by Lori La Bey
Today was a wonderful day. My cousins, Sandy and Donna came to visit Mom. We talked of getting together for years. It’s hard to believe how much time has passed by. We went from talking of getting together with our classic cars at the downtown North St Paul Friday night car shows, to me now being divorced over two years (Tom got our 66 T- Bird). Where does the time go? It was so nice to spend the day together, just catching up and laughing.
Yes, it was this past Saturday we met at Mom’s nursing home so Sandy and Donna could visit with her first. None of us knew what to expect as she sleeps most of the time these days. The girls said, “Hi Aunt Dorothy.”
I always loved the tone of their voices. They are both so love filled, it just seeps out them. I don’t think either of them really knows that about themselves, but I’ve always noticed it since I was a small child. I could tell Mom felt their presence too, even though she didn’t appear to react. That was until Sandy leaned over and touched her.
It was fun to watch the chain reaction. Mom was calm as Sandy leaned in towards her. Then the jump and jilt as Sandy’s cold hand touched her. Mom panicked, not knowing what was going on. Next Sandy jumps and pulls back. Her face almost fearful yet apologetic at the same time, surprised at Mom’s reaction. Than giggles from all of us including Mom, knowing all was really just fine.
I realize these days how in tune my senses have become with Mom. Recognizing things most people don’t see, like when Donna was rubbing Mom’s legs through the blanket when they were saying good bye. Even though Mom’s eyes were closed she surrendered to the peaceful, loving touch of Donna. I can actual feel the energy around Mom change these days. I know it sounds strange, but this is what happens and I accept it for what it is.
At one point in our conversation Mom appeared to retreat back into her own world, then up went an eye brow rising in response to our voices. It was so cute, so perfect. She was with us and she wanted us to know that.
Sandy and Donna brought Mom one of her favorite things. A Dr Pepper. She always loved her Dr Pepper and many times would start giggling and singing the “I’m a Pepper, you’re a Pepper” song, but those days have passed. These days are simpler. I just look for ways to bring her joy through taste and touch… As she sipped the pop her body tightened and then she grimaced. I felt a pang in my heart wondering if the pop caused her pain. Her rotting teeth up until now seemed not to bother her. Another thing I’ll need to investigate. I hate the thought having her “knocked out,” as she would say about having her teeth pulled. Mom was always so proud of her teeth, her smile. Even in the end stages of this disease my soul feels she would know if her teeth were pulled.
I’ve watched her closely over the years reacting to textures and changes in her mouth – smooth, rough, chucky, peer aide, hot, cold, bitter, sweet…
My mind wonders if she does get an infection from her rotted teeth what would she want me to do? Would she want to be toothless with dentures in a drawer somewhere, or just let the infection take its course and let it be God’s will?
Mom always had a strong faith, but she also had a strong will to survive. She had an incredible fear of the Dentist. A childhood friend died in the dentist chair from anesthesia. I would hate for her to grab that fact and focus on the fear. Would this childhood memory be a likely thing for her to cling to? The moments of clarity are further apart but they still exist with no warning.
I don’t think I could live causing her great fear like that. What would Mom want? What would she want today knowing things have changed so? She always said she never wanted to be a burden, but in whose eyes? She is not in my eyes. How will I know what to do? How will I react? Just pull one tooth if it is infected knowing others may need to be extracted at another time? My eyes well with tears, contemplating, agonizing over the “right” decision. Is there a “right” decision? How will I know? How will I live with this decision if it must be made?
She has a DNR, Do Not Resuscitate. Does this fall into that category? I kind of think so and that gives me some comfort. Mom was clear on not having added measures to extend her life. Yes, she was clear about that when we did the paperwork and she understood what that meant.
I was strong and adamant with the Dentist a few years back when she wanted to pull all of Mom’s teeth and do the denture thing. I knew that was not what Mom would want. Back then I knew it would cause her too much pain and she would feel the difference in her mouth, and it would be devastating to her. Why does it feel so different now? I guess it’s just getting closer to that final good bye that will take place sooner or later. Back then I knew we weren’t that close. I knew it would come, but it was still far enough out for me to feel safe. I knew it was safe to think just about what Mom would want as I didn’t have to deal with the end. But now, well now it’s different. This could be one of the last decisions I make for my mother and this one will really have a great effect on many. This could be a decision I won’t have a second chance to rethink. Oh my God the weight is heavy weakening my body. I just want to scream as loud as I can, but I can’t. I would scare my dogs to death.
“Stay calm Lori. Walk your walk Lori. Follow the words you peach to others. What are the three words you have told others to live by Lori?” The voice in my head and heart won’t stop until I answer it.
“Ok, three words. I know them. I can hear myself say them… is Mom SAFE, HAPPY, and PAINFREE. Yes, those are the words that have changed my life and Mom’s for years now. It’s about her, not me. Is she SAFE, HAPPY, and PAINFREE?” I say to myself.
Right now, we are 2 out of 3 for sure. The pain free thing is a tough call as it’s like an interpretive dance. It’s an art to figure out if they are comfortable, and if not then looking for the signs to direct you to what is wrong. So, is pulling her teeth going to allow her to be pain free? Well, definitely not during the process. “What about afterwards?” I ask myself. There may not be physical pain, but there could be emotional pain which would be horrendous for her as well. No, I don’t think pulling the teeth is the answer.
It’s hard to imagine my life without her, without my Mother. She has always been a strong force in my life; full of wisdom and compassion. She has taught me so much through this journey of disease. Actually, especially through this maze of memory loss. The impact of this woman on my life cannot be summed up by mere words. She was so much more than the spoken language could describe.
How do I honor this woman? How do I honor her while she is here? How will I honor her life upon her passing?
So how did I get here in this overwhelming realm of responsibility and guilt through an amazing visit with my cousins? It’s called care giving. There is no beginning or end to anything. All is a piece of another. It’s just another turn in the maze of memory loss.
Will I find my way out or is the true lesson of life walking through the maze? Learning to love unconditionally, putting others needs before our own, no matter what? Is it all about getting us to focus on what we’ve gained which then allows us to feel such an extraordinary loss? Is it about teaching us gratitude for what we have and have had in our life?
Yes, the visit with my cousins Sandy and Donna was wonderful. After visiting with Mom, we sat for hours chatting and laughing, disclosing hidden treasures buried within the family so we could connect a few more dots. It was fun and refreshing and I sure hope we do it again very soon. Yes, it truly was an Infectious Visit. I have been infected and affected by these two wonderful women and I want more of it. Mom would love us to be closer too.
For those of you that missed the FOX 9 News story on my Mom who has Alzheimer’s disease and myself, here is the link. I’d love to hear your thoughts. After viewing please take our poll, just click on the poll tab along the top of the page. Thank you for your assistnace! Lori La Bey
http://www.myfoxtwincities.com/dpp/news/in-depth%3A-a-caregiver%E2%80%99s-voice
A “SPECIAL THANKS” from me goes out to:
FOX 9 News, and Producer- Julie Anderson, who was my main contact and was exceptional to work with.
Barbara Lee Friedman, who did the Interactive therapeutic music program with my Mother. Barbara also does DVD’s for families to capture the wonderful moments. She can be reached at: web.mac.com/blee214/Music_Memories/Home.html
Nancy Chakrin, who captured the music session with my Mom on DVD. Nancy is an Artist, Photographer, and Videographer. She would love to assist you in capturing your special moments. She can be reached at: http://www.nancychakrin.com/index.html
Guilty Pleasures By Lori La Bey of Senior Lifestyle Trends
- Mom’s 82nd Birthday Party
The guilt has passed or at least this last “Guilty Caregiver Wave” has. My heart was feeling heavy because I canceled Mom’s 82nd Birthday Party. She is a “New Years Baby.”I knew I would reschedule the party once I felt better and could coordinate family to be together, but for some reason this was more than a birthday party to me.
So why the guilt? Why the heaviness? I had to analyze my feelings. I had to dig deep. I needed answers and to find that peacefulness within me again. I needed to understand the source of my guilt.
So looking back I now can see the important things that affected me.First, you need to know Mom is in her end stages of Alzheimer’s disease. She wouldn’t know if we had her party on her actual birthday. Heck, she wouldn’t even know it is her birthday! So what was my problem?
Second, I didn’t want Mom to be alone on her birthday. I knew I couldn’t visit being sick, but I was afraid of her being alone, without family. I was afraid my family wouldn’t go visit her. They rarely do. I no longer get upset about that. I no longer judge them like I used too. I understand how difficult it is for them. I understand and accept the fear they live with.You see Alzheimer’s disease is like this invisible net that traps families. People get tangled in the net, paralyzed by fear seeing their loved one disappear before their eyes.
Now given all of my fears and my families, I do have to tell you my family all stepped up to the plate and went and saw Mom on her birthday, New Year’s Day. I was so touched, so happy to see them put Mom first. Or did they do it for me? Knowing how much I needed them to visit. No matter which it was, I was thrilled and I knew Mom knew they were there.My two Brothers each got a different response from their visit with Mom. One got a giggle the other tears. Neither seemed to understand that was her way of acknowledging their presence. The tears and the giggling didn’t make any sense, but it is how she communicates now days. Normally she just sleeps, any change makes me ecstatic.
Third, I found my guilt came from this deep seeded feeling Mom is dying. It’s not like she is going to die tomorrow. It may be months. I just felt and still feel in my heart she won’t have an 83rd birthday and so I wanted her 82nd to be perfect. No wonder I felt a huge burden of guilt. It all made sense now. I was dealing with yet another stage of “Good Bye,” in this very long series on Good Byes, called Alzheimer’s.
Fourth, I do have to share I did reschedule the Birthday Party for January 16th, 2010. We held it in a conference room at the nursing home.
This year’s Birthday Party was different. Mom’s ability to interact had declined significantly. I filmed it, but haven’t been able to look at it, to re-live it, and truth be told I probably never will.
You see the film captured Mom in her “lounging” wheelchair which takes up one corner of the room. In the opposite corner was my family. It seemed so strange to me. The room felt out of balance, totally disjointed. I don’t think anyone else was aware of it but me. I’m just so connected to Mom. It was hard to feel the disconnect, but to actually physically see it. It made me feel ill. It reminded me of a boxing match. I tried to facilitate family to interact with Mom saying things like, “Would you like to feed Mom some birthday cake? She loves her DQ cake you know.” I felt myself working the room. My mind kept saying “Don’t they get it? Can’t they see the opportunity to create joy with Mom, for Mom, is dwindling before their eyes?” Fifth, I admit I worry about how everyone will do when Mom passes. How will my family deal with their loss? How will I? Will we be content with the time we spent with her? How will we remember her?
I know bottom line I shouldn’t even think about these things, but I do. I think it’s a natural thing to do, or it is for me anyways. I do know that if I’m going to pose these questions they should only be posed to me, as I am the only one I have control over – me and my choices, that’s as simple as it gets
.
I have learned worry is a useless emotion. It fills no purpose. It answers no question. It just distracts, drains, and makes me spin. So yes, I need to let go. I need to stop worrying about things I can’t control. I know I just need to focus on my relationship with Mom. Nothing more, nothing less. So why is it so hard when I know what I should do? I guess getting older doesn’t change that. I just recognize it easier, well sometimes I do.Sixth, this 82nd Birthday Party was also different because I wanted to share with my family what I do with Alzheimer’s disease. How it has changed my life. How I am not just an occasional volunteer for a cause I believe in. I am “AN ADVOCATE ON STERIODS FOR ALZHEIMERS’S DISEASE.” I don’t even feel like I have a choice in this role anymore. It is who I am. It is why I am here. It is my life, my mission, my purpose.
Given all this, I decided to bring my computer to the party strange as it may sound. I needed to. They all knew I did something with Alzheimer’s disease; it was time for them to learn what I do and why I do it. So as we decorated the room I played a music therapy video of Mom I had made this summer. My family was amazed to see her beautiful response to the music. Funny thing was, Mom responded all over again at the party to the music playing; she just was not able to respond like she did in June. The change in her ability to react was noticeable to all.
I shared with my Brothers my resource website “Alzheimer’s Speaks” and the Blog. I think they were both in a bit of shock when they realized how much this disease has impacted my life. How it has lit a passion in me to help others deal with the disease. How they have helped me realize the needs of families.We talked about my book coming out this summer called “Alzheimer’s Speaks – Guiding Caregiver to Be Their Very Best! – Giving Voice, Enriching Lives as the Cookie Crumbles”
I mentioned a TV interview which will be airing soon and will have Mom‘s music therapy session highlighted along with the work I do. I shared a memorial jewelry piece I found we could create for each family member as a remembrance piece of Mom. They thought was a cool idea.
It felt good to talk about these things with my family as they haven’t really been discussed. One of my brothers came and heard me speak one time. He just asked,”Where did all these stories come from?” I was shocked as I had told them before, but we only hear what we want to hear. What we are ready to hear.
Seventh and bottom line, the party was a success. A shorter timeframe yes and less interaction with Mom due to her decline, but still a good time. As a family we were together. We celebrated Mom’s 82nd Birthday together. We captured wonderful photos filled with love, laughter, and of course balloons! This we will have forever…to together. We wrote in a family gratitude book I started last year for family functions and everyone wrote a little something in the book. Together the day was a blessing. A gift of remembrance for future times.
My guilt has now disappeared and I look at the photos of Mom each day as they scroll on my website bringing me joy. I’ve found that peacefulness inside once again. Yes Mom’s 82nd Birthday Party was a success. It was a true Guilty Pleasure.To see all the birthday party photos go my resource website they are on the home page scrolling with the big balloons.
A Fractured Day
By Lori La Bey of Senior Lifestyle Trends
Once again one of our reader’s shares a heart breaking story with a twist, and I didn’t want you to miss out. Michelle and I have had ongoing conversations regarding our Mothers. This particular story real touched me and I felt compelled to reply and use her specific situation to show how our perceptions and attitudes at any given time can shift our experience. Please read Michelle’s comment and my reply. I’d love to hear your thoughts as well! Remember there is no owner’s manual with this disease, so the more we share our experiences and thoughts the better off we all will be.
Hi Lori…yesterday…not a good day. The nursing home business office called me to say there was a balance in my mother’s account and they wanted to know who the check should be made out to…her estate or the funeral home. They suggested the funeral home, so I went with that. For some reason the call left me a little upset, but I went about my day. I had to take some paperwork to another office and decided to take a walk outside. I guess I was so preoccupied that I ended up falling down on the sidewalk and a kind gentleman help me to get up. I decided at that time that I had better get back to my office, but while doing so I was limping and in a bit of pain. Well because I fell during working hours I had to go to the emergency room and I now have a fractured ankle. Can you believe it??? but prior to going, I sat at my desk nursing my ankle and when I opened my desk I saw my mom’s obit. I became so upset because I thought how she would have been at my side during my visit to the ER. I hate that my mom is not here and I miss what she would be doing for me if she were alive.
At home today nursing my ankle back to health and have sweet hubby waiting on me…hand and foot…LOL
Take care Lori…and hope to hear from you soon. How is your mother and daughter doing?
Here is my response to Michelle
Oh Michelle,
What a horrible day, from the draining emotions of loss and grief to the physical pain of your ankle. I’m so sorry you had bad day, but there were some good spots in your day. I know it’s hard to see them when we are filled with sorrow so I’d like to take a moment and point them out to you, and when you’re ready you might decide to remember this “fractured day” differently.
1) For example, having a “balance.” Extra money is always a good thing. It would have been more welcoming if it wasn’t associated with the loss of your Mom, retriggering your grief. I’m sure that is why you felt upset. That would be unsettling to most any one of us in your situation.
2) The kind gentleman who helped you up when you fall, that was a wonderful gesture.
3) Now the emergency room and the fractured ankle that’s never fun, but I do see a fantastic opportunity to shift this story. You mentioned you hate your Mom is not here and couldn’t be with you at the hospital. I totally get your thought process and have had many days where I focus on my loss and feel sorry for myself, my loneliness. It’s a natural thing we do. What if you look at opening your desk drawer and seeing your Mother’s obit, as a sign she was with you. That she was trying to tell you she is there for you just in a different realm. Think of her as your Guardian Angel, always at your side, always in your heart, always connected to you. If you can shift your thought process to accept The Guardian Angel concept your reality will most likely become comforting. You will feel loved, cared for, not alone or abandon; only reassured your connection with your Mother lives on past this physical world in which we live.
4) Living the pampered life with a caring hubby waiting on you hand and foot….not so bad honey, not so bad! LOL
As for my Mother we did have her 82nd Birthday Party and I will be writing on it soon and posting pictures. My Daughter is doing well. She is has a wonderful new boyfriend and is doing well. Thanks for asking
Here is a communication between a wonderful daughter and myself. She is struggling in her Mother’s last hours on hospice. We have been communicating privately and I know as we’ve talked before she is ok with me sharing communications. Her struggle is a common one on many levels. Please read her comments and my response. This blog was started and will continue to be a tools to learn from each others experiences.
Hi Lori…my mom is still hanging in there, but today I went to make final funeral arrangements for her since they seem to be giving her 24-72 hours to live. I simply cannot go back to visit my mom anymore, it’s just too much. I do not want to sit there and wait for her to die. Making those final arrangements were tough but I had my husband with me who helped me not make too many hasty decisions.
I’m home now resting, just took a sleeping pill and ready to sleep for the night. I am so mentally exhausted by this.
You are in my thoughts and hope you are back to feeling well again
My response to this wonderful daughter in need of support –
Oh Honey,
I’m so sorry. I know how draining all this is on you. I’ve been there and lived it with my Father. It sounds like you should be able to get a good night’s sleep. I’m glad to hear that. It’s wonderful your husband is so supportive. For that you are extremely lucky. Let him take care of you, when you are too exhausted to do it yourself. Let him protect you, as it gives him the opportunity to express how much HE LOVES YOU!
Also know it’s ok if you can’t sit with your Mom until the heavens part and accept your Mother into all their glory. She will understand and you have to remember you’ve done your work with her. She knows how you feel and how difficult this transition is on you. Many times people won’t pass with loved ones near if they know it will be too difficult on them. So rest assured, you are doing the right thing for you and that is what your Mother would want. I can tell from your writings the bond you two hold. You don’t want her in pain and she doesn’t wish that on you either.
Be proud of how you have, and continue to handle this journey. You are filled with loving intentions and it spills over to all you write, and I’m sure ,all you do and touch.
Remember the reaction you got from your Mother when you told her you loved her. How she came out of her cocoon and expressed acknowledgement of you words and touch. I would imagine that memory will be hard to beat. Never release that feeling of joy you had. Your Mother knows you love her and want what is best for her, and that you have fought to make sure she is comfortable, safe, and pain free.
You have been your Mother’s guardian angel through this process, and she will soon be yours. Embrace the thought of always being connected, no matter where each of you is. You have a divine connection through love and in love with your Mother.
Sleep tight. You are in my thoughts and prayers. I’m here is you need me.
Lori
A New Years Regret
A Cancelled Birthday Party
By Lori La Bey of Senior Lifestyle Trends
Today I had to make a really difficult decision. It may not seem like much to most, but I agonized over cancelling my Mother’s 82nd Birthday Party. Mom is a New Years Baby. My heart aches unsure Mom if will make it until her 83th Birthday. The odds are against it as Alzheimer’s continues to steal her away bit by bit.
You see I have this horrible cold and I know I should not be around Mom or at the nursing home when ill. I also know the last thing I should do is cook and get others sick as well. I know I could have asked others to bring food and drink or order it at the last minute; but bottom line I want to be at Mom’s party. Selfish I know.
I asked myself many times, “Why do I feel the party can’t go on without me?”
Is it my ego getting in the way?
My answer kept coming back “No.” It’s not about my ego. It’s about enjoying our time with Mom. It’s about appreciating Mom, all she has been, all she is, and all she has to offer even in her end stages of the disease. This party is about family getting together to celebrate my Mother’s Birthday like we did last year on New Year’s Day. This party is about unity, simplicity, and love.
I am hoping family will still stop by and visit Mom tomorrow on her birthday, New Years Day, but I also know how uncomfortable everyone is doing that on their own. I understand their discomfort. I understand their lack in confidence on what to say and do when a person doesn’t appear to respond. I appreciate the fear they feel. I understand their sorrow as they look at Mom and they feel they don’t know her anymore. I appreciate the sense of loss they hold and the anger that burdens them.
You see, I too have felt all those things over the years, but I’ve been given a gift to look deeper, to feel deeper. I have been given the gift to let these emotions process and let them go, so I can move forward and engage my Mother. I know longer judge others and get angry because they don’t visit Mom. I just pray someday soon they will be able to see and feel what I do when I visit her. I pray they will be able to connect with Mom like I do and will see the brief glint in her eye, or smirk on her face.
These things give me reason to be sad, scared, and excited at the same time, as most of my family has not seen my Mother since her last Birthday. Even with me there to guide things along, it was tough on them. Now, this year, Mom has slipped even more. If they do visit, I know they will be shocked. I’ve tried to prepare them for these changes, but it’s just not something they want to hear. My thought is that if they visit individually that will be easier on Mom. The party atmosphere would be difficult for her at best, without someone who can interpret her needs. I’m that person for Mom. I get her. I see things in Mom most do not.
I do plan on rescheduling Mom’s Birthday Party, but want to make sure my Brothers are able to be there. My younger Brother travels a lot for work, so the scheduling gets complicated, but we will figure it out.
I am trying to tell myself everything happens for a reason. Maybe cancelling the party will allow my family to see the changes in Mom and process them alone. Maybe this will give them private time with Mom to say whatever they need to say to her. Maybe this in the end will be a gift to all, and we will celebrate together later. Maybe this year Mom gets a “tofor” – a two for one opportunity to see family.
I just pray I made the right decision, the one in Mom’s best interest. I pray my ego did not get in the way.
Gift Giving Another Causality of Alzheimer’s Disease
By Lori La Bey, of Senior Lifestyle Trends
My hands were aching from shoveling the wet heavy snow and my body was chilled, but I wanted to stop at Mom’s. If I didn’t do it now I knew I would curl up at home and not want to leave. So off I went to visit Mom at the nursing home this X-Mas day. I didn’t even get the card I had picked out for her. I didn’t trust myself.
I was afraid I wouldn’t leave the house once I went in. I figured Mom wouldn’t mind if I brought the card tomorrow. This was my first year I wouldn’t even bring Mom a gift for Christmas. I almost bought flowers, than realized I was going to be buy them for me, not Mom. The truth is I’m not sure how much she can really see any more.
I knew for sure she wouldn’t remember the flowers were for her, or who they were from.
I knew beautiful flowers didn’t trigger anything special for her to hold onto, so what would the point be?
Yes, the flowers would be for me. I would ”look like” a caring daughter, but flowers have nothing to do with how much I care, how often I visit, or the quality of my visits. So I decided to pass on performing for looks, purchasing flowers to play a part. Performing for my ego. It felt strange to put my gift buying in prospective like that. Even as I write this knowing full well my thoughts are true, it was so strange to walk in empty handed.
Yet on the other hand, for many years now I’ve whined about the commercialism of Christmas and how disgruntled it makes me feel. How we have lost the true meaning of the holidays and the simple appreciation for one another. Since Mom’s been diagnosed with Alzheimer’s, I am usually able to look at things in my life in a deeper fashion. What is relevant and what is not? What has meaning and what doesn’t and why.
That part of Alzheimer’s disease has been a gift to me.
But like most Caregivers dealing with this disease, I ping, and I pong. I can see the good, the bad, and the ugly; depending on the mood I’m in. I also realize the sadness I feel about not buying a gift for my Mother because there is no joy in giving her a gift at this stage. Who would have thought Alzheimer’s disease could take gift giving from me? Of all the things I could list which I’ve lost due to this disease, I have to admit, gift giving would not have been something I would have ever thought to write down, but the reality is, gift giving another causality of Alzheimer’s. Another loss.
Now in the later stages of Alzheimer’s it is work to try to get a response out of Mom for any gift she receives. Gift giving is not meant to be work. It is not meant to be work of recognition of receipt, but many times, it is what we do with an Alzheimer’s patient. We try to connect and the gift is a tool to do that. So we try hard to get approval, recognition – for what we have given someone. When a person with Alzheimer’s is not able to respond to simple comments or directions, it can become counter-productive and frustrating for all.
I also have to mention, prior to Mom being in her end stages of the disease, she gave me much joy when I gave her something, anything. She was like a small innocent children thrilled to receive any present or kind gesture from another person. I guess I need to balance the loss I’m feeling today, with the extra joy she gave me with that glint in her eyes in earlier stages.
I need to focus on that which I already know. I need to accept and appreciate the gift of our self is simple, easy, and needs no direction or comment. There is no decision on what to buy or how to wrap it. Our delivery is the important thing with this gift. Our attitude. Our love. Our compassion.
Hoping you all enjoyed the holiday!
A Quiet Visit By Lori La Bey
Today as I sat and visited with my Mother I had to admit to myself I was struggling.
Struggling to get her to engage me.
To notice me.
To react to me.
As I felt a lump grow in my throat and my eyes begin to well with tears, I realized my focus was all wrong. I had fallen back into one of my old patterns. One of setting expectations of my Mother. I wanted her to meet me where I was, verses me meeting her where she was.
Setting expectations is such a simple thing to do wrong when visiting a person with Alzheimer’s. Depending on the stage of the disease they may not even know we have expectations of them. If they do understand, they probably won’t know how to meet our expectations. Once I understood what was wrong I could correct the problem. I could correct me.
I was able to adjust my focus back onto my Mother’s needs and not mine. I could touch her and feel how soft her skin was. I could see her briefly react to the touch of my cold hands upon hers. I could look closely at her eyes and see her squint slightly, and sense she didn’t care for the bright light in the dining room where we sat. I could watch closely and see she preferred the banana I was feeding her over the scrambled eggs by the way she chewed. I could see her lips purse because she didn’t like the taste of the milk I gave her. I could see a slight smile spread on her face when I told her we are planning her birthday party for New Year’s Day.
It always amazes me what I see when I look for the right things.
When I get out of myself and focus on her.
When I engage her.
When I notice her.
When I react to her.
When I accept the fact my visits are about her, but not just for her.
When I take time to appreciate what I get from my visits with her.
What she gives me.
What she allows me to see.
What she allows me to feel.
How rich and fulfilling she makes my life no matter what stage of the disease she is in, or what type of day I am having.
My Mother is a gift to me and always will be.
Little did I know how much tonight’s meeting was going to help me, an “Expert” in the field of Alzheimer’s disease. Not that I ever thought or felt there was no more for me to learn. Not that I ever felt 100% in control as a caregiver. Not that I ever felt above going to a support group. No, it was more I just didn’t feel the need to take the time. I felt I had a pretty good handle on things.
But truth be told, dealing with the emotions of the disease, the ebbs and flow of the ongoing changes, hits us all hard at times. Tonight’s meeting was God Sent to me. I had no idea of the blessing it would be to me. The outlet it would provide to me. The comfort it would give me.
You see, last night I went to visit my Mother at the nursing home. Mom is in her end stages of Alzheimer’s disease. At 6pm in the evening, dinner was over and Mother was in bed for the night. You might think that’s way too early and staff are just trying to get her out of the way, but I know better. Mom is tired. She sleeps a lot these days. She is happy to be in bed. This from a woman who when she first moved into the nursing home in 2001, stayed up to watch the Late Show with David Letterman. Boy, things have changed.
I just stood by her bedside and ran my fingers through her hair, touched her checks, and talked lovingly to her. I put on some of her favorite music, Tony Bennett, for her to fall asleep too. I love to watch her smile to the music and every now and then, hum to the songs. She gives me calmness, knowing she is peaceful. She is safe. She is happy.
So tonight at the support group the question was posed, “What do you miss the most?”
Immediately I knew what my answer was. I decided to speak up. “What I miss the most,” I squeaked out, as my eyes welled up with tears. “What I miss the most is my Mother’s hug. She doesn’t know how to hug any more. I miss her being able to tell me everything will be ok. I miss her not being able to console me, or just express her love towards me.”
You see, Mom just doesn’t know what a hug is. She can’t physically put her arms around me and hold me. Her mind can’t communicate with her body to give a hug.
I was surprised at my reaction to answering the question. I was surprised how many things have changed with my Mom. How much I have accepted these changes as normal behaviors now. Like the fact that she can’t do a simple little thing, like hug me.
It made me realize once again, how different everyone’s situation is. How every person reacts and progresses through the disease differently. It made me realize once again, just because my Mom can’t hug anymore doesn’t mean everyone with Alzheimer’s disease will lose their ability to give a hug.
I’ve decided to go back to the Support Group next month. I’ve decided it’s time for me again to have an outlet to process this disease with others in a safe environment, with my caregiver peers. I’ve decided it’s time to spread the word once again the value of Alzheimer’s Support Groups.
I also want to note that if I decide to post anything related to my experience from going to an Alzheimer’s Support Group, like this posting it be based on my thoughts, my comments and not those of others in the group as we have all agreed to keep things confidential. I will say however, many interesting things were shared. Great insight was given by many and if you chose to go I feel strongly you will walk away feeling better about dealing with the disease, then when you walked in.
If you are ready to take the step to go to an Alzheimer’s Support Group, contact the Alzheimer’s Association for a group in your area. Here is there link:
http://alz.org/index.asp
SO WHAT DO YOU MISS THE MOST?
We would love to hear from you.
The little things you notice can make a big difference, so talk about them. Remember, we all see things differently. Here is something I mentioned; having no idea where they might go with the nursing home my Mother lived in.
The rain showerhead idea stuck with me and would not let go, but I could not bring it to Doug, the administrator of the Nursing home Mom lived in, until I knew why it would help. It was a couple of years later when the pieces came together.
I always thought a rain shower head might help reduce my Mother’s fear of the shower. She was not always afraid. In fact, she used to love the water. That of course was before Alzheimer’s took away her ability to know what a shower was, why she needed one and what she could expect taking a shower.
I did not understand why she would say showering hurt her, other than the pressure of the water might scare her and feel hard against her body. A rain shower head on the other hand would be softer, gentler to her skin.
Then one day, I went to a conference on Alzheimer’s disease. A woman by the name of Teepa Snow, an educator specializing in Alzheimer’s disease was speaking. If you have a chance to see her, do yourself a favor. She is a great entertainer and you will learn so much from her. Teepa has tremendous insights!
During her presentation, she talked about fat pads, how we lose them as we age. We have several fat pad areas, but the couple that stuck out in my head were the tops of our hands and on our shoulders. Bingo. Now it made sense why the shower hurt her. Even though Mom was overweight, and by looking at her you would not think she has lost her “fat pads”, but the truth is she had lost her “protective fat pads”.
Now I could go to Doug, tell him I wanted to make a donation to change out the showerheads to rain showerheads. Doug looked at me, and smiled and said something like, “Ok Lori, I haven’t heard this one before, so I have to ask why?”
I told Doug my Mother said the shower hurts her. I did not understand why or how for a long time, but she would routinely make the same comment. It was evident by talking with staff Mom did not like taking a shower anymore. She would get combative. I could understand how the water could scare her. How she could not understand what a shower was, and it did not make any difference if the water was on or not when she walked into the shower. The water just hurt her body when it hit her.
I told Doug, about Teepa Snow, and the fat pads. Doug just smiled and said, “Lori, you have perfect timing. We are just in the process of remodeling the bathrooms. Do you have any other ideas?”
Well, of course I did. We talked about piping music in the bathroom as it can have such a calming effect on people. We discussed aromatherapy, and how it could assist in calming residents down. We talked about heated tile flooring and heated towel bars, lighting and colors. Doug worked within the budget and incorporated most of what we discussed. The staff and designers did a fantastic job, and the bathroom turned out beautiful. The staff and residents love their new Spa room! The atmosphere is totally different, relaxing and beautiful.
As simple and goofy as ideas can sound, I encourage you to speak your thoughts. If something is calling you to pay attention, do it. Look for the whys. Focus on increasing the simple quality of life issues that arise in everyday living. You may be amazed how your ideas are received. I know I was.
The meeting with hospice was comfortable. They were friendly and caring. They made a difficult discussion, simple and as easy as possible. We went over all the technical stuff and then they asked, “What do you need Lori.” That is when I lost it. I apologized immediately for my behavior and they handed me a Kleenex and then another. ”It’s ok this is what we are here for, Lori.” The hospice nurse said.
I was shocked and embarrassed of my behavior. I did not expect to break down and cry. I had put the call into hospice. I knew Mom was in her end stages, but by no means did I think she was going to die in the next few days. Where were all these emotions coming from? I knew the drill. I knew what to expect. I had been through this with my Dad. Hospice is a fantastic service, so why was I upset? Why was I crying? I was prepared, or so I thought and I continued to cry. “All I need,” I stuttered out, “was for my Mother to be well cared for in her final days.
There, that was it, “Her final days.” I was starting the countdown in my mind. ”I want her to be pain free and able to enjoy life. As for how that happens, I’m not sure what all you have to offer.” And I cried some more. They reached out to hug me and give me yet another Kleenex, as they explained their services.
I told them, I was very happy with the care Mom was receiving at the nursing home. I wanted her to remain there, but felt additional services would be wonderful. We continued to talk and they listened as I told stories of my Mom.
It was decided hospice would evaluate Mom’s medications and see if they could get some in liquid form vs. feeding her ground-up pills. They even mentioned medications that come in lotion form. They could have a Pastor come visit. We discussed additional support for grooming, as this was such a struggle for Mom. They even had a music therapist, which I told them Mom would love. They would check on volunteers to visit with Mom. There would be extra staff reviewing her chart both nursing and social services.
They mentioned services for the family now and even after, Mom passes, if we were interested. I was so appreciative of their kindness and understanding. Hospice was not just another layer of protection for Mom, but all of us. No one should be fearful of calling them. They are angels helping people pass through life with dignity.
I remember leaving the nursing home that day thankful they were going to recommend Mom for Hospice, yet still balling my eyes out as I drove home. I thought I was going to have to pull off the road as I drove, even though I lived only a few blocks for the nursing home.
No matter how prepared I thought I was for this journey, no matter how wonderful the nursing home and hospice staff were, no one could change the fact my Mother wasn’t going to be around forever. I guess the old saying is true; you can never prepare for the loss of a parent. I did however, feel good about having hospice to come out knowing I was doing everything I could to ensure her last days were going to be the best they could be.
In the end, Mom was on hospice for one month. The good news was she improved during that time. The bad news was she was taken off hospice because she improved. What that means for the future, is that we will most likely go through this process all over again.
The Back Alley
This example came about from me not being too happy with a decision the Nursing Home was making. They like many businesses were reassessing how to keep a float with all the changes in healthcare. They had decided the front side of the first floor was going to turn into a transitional care unit.
Well, you may ask, “What’s the big deal Lori?”
For me the problem was my Mother lived on the first floor and had a front room facing the waterfall. She was now going to be moved to the backside of the Nursing Home, which faced the alley. Her view would be a service road lined with a fence. Mom loved her view of the waterfall especially since she thought I built it!
Off to Doug the Administrator I went. This time I was not so pleasant, and Doug and I laugh about our conversation now. He tells everyone he felt about 2 inches tall by the time I got through with him. The wonderful thing about our conversation, or my ranting, was Doug let me vent and listened to my concerns. He went home that night, not feeling good about our conversation, but he also did not brush me off as a nut case.
Doug got the point that if this move was going to take place, my request to have the back alley spruced up was not unreasonable. It made sense from a quality of life standpoint. Maybe I did not tactfully state it, but he could see my point. Doug talked with his superiors and the next thing I know they are planting Rose brushes, and all sorts of other plantings, adding seasonal flags, along with an assortment of ground plaques. I was amazed. In this small area, no wider than three feet, a beautiful garden now grows. The colors and scents are wonderful. It changes in every season. Even wreaths are added to the fence, during our Minnesota winters.
I have to give credit where credit is due. Doug, the Administrator, is and always has been a true professional working on the behalf of his residents. Kudos Doug!
As simple and goofy as ideas can sound, I encourage you to speak your thoughts. If something is calling you to pay attention, do it. Look for the whys. Focus on increasing the simple quality of life issues that arise in everyday living. You may be amazed how your ideas are received. I know I was.
Could They Be Soul Mates? By Lori La Bey
I remember coming to visit my Mother one summer’s day as she was sitting outside on the bench. We talked about many things, but today, she had this glow about her. This girlish smirk was plastered to her face and she could not wipe it clean if her life depended on it. I asked her what she was so happy about. She talked of a new friend she had met at the nursing home. She told me he was tall and handsome. They talked about everything, went for walks, and held hands. They would sit outside each night and watch the sunset. Mom was smitten with this man! She was so happy to find someone to confide in. Someone who wanted to be with her. Someone who made her feel worth wild again. A true companion. When I asked Mom this man’s name, she continued to smile and said, “Oh Lori, I can’t remember, you know I have Alzheimer’s.” and then she giggled.
Each day I would visit in hopes of meeting this man. Maybe she would remember his name, point him out to me, or better yet introduce me to him. I wanted to meet him. I was curious and excited about meeting this man who made my Mom so happy. I was checking out every man on her floor trying to figure out from her description who he was. He was tall, built solid, but not fat, and had gray hair. As hard as I would try, I had no luck. Then I began to wonder, was it was a resident or a visitor. I decided I better talk with the staff and make sure Mom was safe.
The nurse I talked to was a bit reluctant to talk to me at first. After our discussion, I knew why. You see, the man Mom described, was actually a woman. I was told the Staff had been monitoring the friendship. This is something they do with all relationships to ensure everyone is safe. The poor Nurse who had to tell me, had no idea what my reaction would be. I can only imagine her discomfort and the various reactions staff must get from families. I was pretty sure this was not the first time they had this type of situation.
I told her I was fine with the relationship as long as Mom was happy and not being harmed. I had not seen that spark in her eyes in a long, long time. She was so peaceful. She was in love! I was not about to take that away from her. Once I knew who the woman was, I could see how my Mother might think she was a man. The woman did have a manly build and manner about her, but bottom line was she made my Mother very happy. In my eyes she was a gift to my Mother.
A few weeks went by and I never told my Mother the man she was in love with was a woman.
What was the point? She was happy and that was so nice to see. I did wonder how she would react if she found out. Would she even understand or care? Would she be ok with it or would it end? Given her age and her upbringing, I really had no idea how she would react given her disease. Then one day when I came to visit my Mother, I saw her sitting on the bench outside. Her face was red and angry. Her arm crossed and tightly pressed into her body. I asked her what was wrong and she would not tell me. I asked where her friend was and she said they were not seeing each other anymore. She said sternly, “We broke up!” When her friend walked by us, I thought my Mother was going to blow her cork. She was seething mad and we had to move and get out of the area her ex-friend was now in. This angry, hateful mood took over my Mother and it lasted a good month, maybe more.
I asked the staff what happened to cause their break up, and that is when I got upset. Someone told my Mother the man she fell in love with was a woman. To this day it makes me livid, someone felt they had the right to take my Mother’s happiness away.
I know everyone will not agree with me, on this one. Same sex relationships are a hot topic, but the simple pleasure of being loved and accepted is a quality of life issue to me. An issue I take very seriously. This was not an abusive relationship or one driven by sex or money, but a relationship built on companionship. It was as if my Mother had found her soul mate.
To this day, I do not know who told my Mother. Was it staff? Was it someone in my own family with a different view afraid to discuss the issue? Was it another resident or a visitor my Mother befriended? I will probably never know, and it is most likely best I do not find out.
I do think it is an important subject to discuss as a family. How would you handle this situation? Would you let your perceptions, your ego, and your needs outweigh their rights? It’s not an easy thing to think about let alone have a decision about, but we must if we are going to be the best caregivers possible.
Speak Up and Make a Difference by Lori La Bey
The little things you notice can make a big difference. Bring them up to the appropriate parties. Remember, we all see things differently and the more eyes and perceptions the better. Writing this book is prime example. Who would have ever thought I would be writing a book over my experience with Alzheimer’s disease. I mean who am I, other than a daughter who loves her Mother? I am no different from you. Here is an example of one thing I mentioned, having no idea where they might go with the nursing home my Mother lived in.
The Waterfall
The staff at the nursing home was talking one day about putting in a patio in the open space in front of the nursing home and the assisted living building. I nonchalantly said, “You should put in waterfall.”
The staff replied there was no way they could afford that. I told them I had been looking into putting one in my own backyard and they really were not as high priced as one would think. I went on to tell them that for about $8,000 to $10,000 dollars they could have large waterfall installed and what a beautiful feature it would be for residents’, guests, and staff.
The staff brought the idea to administration and was given permission to go with me to investigate the costs. We went on a field trip to the landscaper I had been talking to, brought the information back to Doug the administrator. He liked the idea of a waterfall too, once he saw the numbers were reasonable. We were all involved in the design and how it laid out. Staff found and got bids on glider wheel chairs, benches, plaques for donations in memory of residents, and plantings that were beautiful. Now, we had to come up with a way to raise some extra cash to get it done. Doug decided to have a luncheon fundraiser as the staff was so excited about the project, and whala… we got the waterfall. Doug has told me since than, the waterfall project has changed how they look at their environment. All who visit and live there comment on the waterfall and embrace it’s calming environment.
My Mother of course had her own agenda, and told everyone I planned and paid for the entire waterfall project. She was so proud of my involvement and had many people believing it was all me. There was no telling her different. I just had to keep explaining the true situation to people when they would come up and thank me for the waterfall! It all was quit charming and still makes me giggle every time I look at it.
The Waterfall was a far cry from one-person project. I may have had the goofy idea, but to tell the truth, I really did not expect to go anywhere. It truly was a group effort that pulled this project together, and a hige thank you has to go out to Doug the adminstrator for working outside the typcial box and budgets! It was a wonderful experience for me to connect on a new level with the Nursing Home.
As simple and goofy as ideas can sound, I encourage you to speak your thoughts. If something is calling you to pay attention, do it. Look for the whys. Focus on increasing the simple quality of life issues that arise in everyday living. You may be amazed how your ideas are received. I know I was.
Corn On the Cob, Please by Lori La Bey
The last thing any of us thought Grandma would want to eat was a piece of corn on the cob. If you saw my Mother these days’ you would see her big beautiful smile. The problem for most people is predetermining or judging what that smile should look like. Most of the time my Mother’s teeth look like a rusted chain saw with fried rice stuck to them.
My brothers and most others would comment, “They aren’t taking good care of Mom!”
The truth is my Mother is cared for wonderfully with love and compassion. It is not staff’s fault Mom wants to bite their hands off when they try to brush her teeth. Hygiene activities are probably the highest ranking “fight modes” amongst Alzheimer’s patients.
Anyways, the corn arrives and the smell hits us all. The aroma of fresh hot corn on the cob just makes you feel good and brings you to happy times. Chipped, broken, and rotted teeth are irrelevant. Grandma wants the corn on the cob. I ask if she would like me to cut the corn off the cob. She looks at me like I am nuts, and continues to bite and suck each kernel off the cob with a big peaceful look on her face.
Mom did not even appear to know or care that the rest of us were standing by her. She was in her own world of happier times enjoying a fresh piece of corn on the cob. Her eyes found a new light and glistened with beautiful memories playing in her mind. Watching her, I wanted to join her in the restful place she found. How wonderful such little things, like smells, tastes, and sounds, can ignite our imagination and bring us to pleasant times.
Three pieces of corn later, Grandma was full!
Picture this: Your parents have moved up north to the lake for retirement. They were the typical Snowbirds, winters in Florida, but not this year. Illness kept them from traveling. Dad had Brain Cancer and my Mother early stages of Alzheimer’s disease.
They were both in great shape, things just moved a bit slower. Dad was still able to drive and had no major problems after his surgery and treatment other than the normal tiredness and hair loss. Mom and Dad functioned very well and none of us kids were nervous having them two hours away. We kept in close contact and everything seemed fine. That is until one August afternoon at my home.
We were having a birthday party for my Father. It was a beautiful sunny day on the patio. The grill was going, and the wafting smell of BBQ filled the air. Conversation was flowing and the love of family was as strong and solid like the concrete we sat on.
Than the conversation turned, taking us all by surprise. My Father was known for his great stories and wonderful jokes. Today Dad tried to cover his tracks after Mom made an innocent statement. It went like this:
Mom mentioned she had fallen outside when they were up north this winter. An incident never mention in my at least daily conversations with my parents. “Interesting,” I thought. I can’t wait to here this one. “HUMMMMM,” I thought and I listened.
My Dad jumped right in to explain. “Oh Mom and I were just going to make a run to the store and she slipped, on a patch of ice between the house and the garage. It was no big deal. She was not hurt. I tried to help her up but I’m not strong enough any more. I knew I couldn’t go inside to call anyone for help. All the neighbors left for the winter, and if I left Mom alone, I knew she would get nervous if she could not see me. You know how time gets so confusing to her and I did not want her to have a panic attack when I was in the house calling for help. So I went to the garage. I got some salt and sand, and sprinkled it around her, thinking it might help her position herself to get up. Of course my reaction was a bit different then Dad’s. My mind is screaming, “LIKE SHE’S A TIRE? WHAT THE HECK IS GOING ON HERE?” She really found a big icy patch were she fell! That did not work, so I went back into the garage and grabbed the red sled. I rolled Mom onto it and pulled her back up to the house and between the two of us we managed to get her up by holding onto the railing. Than, we decided to go inside and stay put for the day. We were both pretty cold by than and thought hot chocolate sounded good!”
My mind drew a picture of my parents, both fallen on the ice, frozen to death on the end of the peninsula as the wind whipped them and the snow covered them. Things had to change for winter living arrangements. That was a vision I could not whip from my mind. Neither could my brothers. Things were going to need to change. This was not a situation that was acceptable to us kids. It was time to regroup once again.
I’m a Pepper You’re a Pepper by Lori La Bey
This is one of my favorite stories. My Mother was over weight by a good hundred pounds. She was in the nursing home and doing just fine. One of her simple pleasures was having a Dr Pepper as a treat. One day while I was at a 1/4ly review on Mom I asked if I could drop off a 24 pack of Dr Pepper for her. I wanted Mom to be able to have a treat each evening.
The dietician piped up and said, “Well can you make that a diet Dr Pepper?”
I looked at her, and boldly laughed and said “NO. First of all, my Mom knows the difference between to the two: and second, she laughs and sings “I’m a Pepper, you’re a Pepper” song every time she has one; and no one is taking that special moment away from her!”
The dietician softly told me it would be best for my Mother with her weight issue if I would consider the diet pop. I stopped her cold and said I will be dropping off a case of regular Dr Pepper.
The dietician smiled and said, “It’s my job, I have to say that. If it was my Mom I would do the same thing.”
I bring this up to remind you, who has the power, even when your loved one is living in a facility. There are rules and regulations that have to be followed, and those that just have to be stated and noted for the governing agencies. Quality of Life is an issue you will most likely address many times on many levels. This example is a simple non-life threatening one.
I told Dad to stay by the bathroom door and keep talking to Mom as I walked into the living room. “I need to call the doctor and find out what exactly was said.” My Father replied in a low tone with little energy, “ok.” I picked up their black rotary phone. My God, why do people still use these heavy beasts went through my mind as I impatiently poked my finger in to each individual number whole and pulled my finger around in a circular motion to place the call. All I heard was click, click, click, as the phone worked its magic. It felt like it took forever before I heard the phone actually ring at the other end. When answered, I immediately asked for the Doctor, and I of course was passed onto his Nurse, Nancy.
I explained the situation we were dealing with and asked again to speak with the Doctor. This in my mind was an emergency. Nancy politely informed me the Doctor was not available and, in addition, he was not the one who placed the call to my Mother. It was her. I then asked Nancy for the details of the conversation. We needed to know what we were dealing with. Nancy promptly informed me Hippa regulations would not allow her to disclose anything to anyone, but mom. I was told in no uncertain terms I would not be getting any information. It was strictly confidential. My face was getting hot, as my blood pumped fast and hard, heating up every inch of my body. I took a deep breath and tried again to explain the urgency of our situation. No such luck. Nurse Nancy was not going to budge, and she was repeating her Hippa bullshit. I cut her off sharply, and explained in no uncertain terms she could throw her regulations out the window, since she so ignorantly put my Mother’s health in jeopardy. I also told her, “I will be in contact with you and the Doctor in the near future. You both better buckle up for that conversation, especially if any harm or worse comes to my Mother over this unnecessary situation!” They haven’t begun to see the wrath of this daughter I thought. Oh, they have no idea what they are in for!
I slammed down the telephone, all ten pounds of that black metal beast. “Don’t these Fuckers understand the impact of their comments?” I whined with anger to my Father. OH, SCREW THEM! My mind screamed. CALM DOWN LORI. Stop the tears. GET BACK TO MOM!
I walked back to my Dad by the bathroom door, grabbed his hand, squeezed it, and motioned for him to sit down on the blue couch before he collapsed. I than explained to my Mother, who still had herself locked in the bathroom, and my exhausted Father on the couch how my conversation with Nancy, the Doctors nurse went. “Yes, I did call the Doctor mom. I DID NOT SAY YOU HAD ALZHEIMER’S. I just said I was concerned with the way you acted the night of our annual girls Christmas shopping. Mom, you usually could walk that mall blindfolded and that night you were withdrawn and appeared confused. Mom you were so different, it was scary. Your eyes looked fuzzy and glazed. When I looked at you, I wasn’t sure you were in there until you said something. Instead of leading the pack, you just sat outside the stores all alone on the mall benches. You did not talk, you just waited for everyone to finish shopping and then off to the next store we would go and again you would not come in. You just sat outside on a bench. You really blew my mind when you asked me to bring you to the bathroom. Heck mom, you were always the one to tell us where they were. I just remember finding a mall directory and maneuvering us to the closest restroom thinking, what’s going on? My mind was spinning.” In my heart, I knew things were never going to be the same again. I began to speak again, “I even wondered if you had a stroke? But no, you seemed coherent, yet strange, different, withdrawn. On the way home, you kept asking the same questions over and over to each of us girls. Coleen, Terri, and I all noticed the changes in you, Mom. We all love you. We are worried about you. We want to help. You even mentioned several times to Dad and me in the two weeks prior to our shopping trip that you had asked the Doctor about your concerns regarding your memory. Remember, he told you it was just hormonal, a normal aging thing. I just asked if the Doctor could call you, back saying he had talked with some colleagues and now knows of some tests you could take to ease your mind. That was it Mom. That was all I said. I never said we thought you had Alzheimer’s. You were the one saying that, Mom.” I paused finally, just exhausted by my pleading.
I could hear the medicine cabinet rattle and pill bottles shake. Why couldn’t they use some common sense? Be respectful of this tenuous situation and understand the fear, the emotions, and psychological impact of the situation. Idiots! How could Healthcare professionals be so damn dumb! The voice in my head said. I looked over at my Dad, our helpless eyes met. His body had melted into the blue couch. Silent, alone, and still, he sat.
“Mom” I said as I looked down at the blue shag carpet with specs of green in it. “How are you doing? I heard the medicine bottles Mom. Have you taken any pills? I need to know Mom. Please tell me. I love you. We all love you Mom!”
“No one cares! You will all be better off if I’m dead!” My Mother frantically cried back, in wrenching pain.
“Mom, don’t talk like that! You know that’s not true. Mom, have you taken any pills? I need to know Mom. You know I need to know. Please Mom, just tell me. Please!”
I begged feeling hopeless, alone, and disappointed in myself for allowing this to happen. My knuckles hit the fifties blonde wood door, and with each strike, guilt stabbed my heart. I could feel warmth running down my chest, like blood draining from my body. The pain was almost unbearable. “Mom, are you ok? Mom, please answer me! You know I’ll break this door down in no time flat if I have too.” I gave her no time to respond, I just kept talking. “Hell, Mom, you know the door is hollow it won’t take me long. Mom, please come out! We can talk this out. We need to talk Mom. This isn’t doing any of us any good Mom.”
All I could hear was the tumble of the toilet paper rolling, and a yank, as she tore off a piece. In my mind, I visualized her dabbing her glazed jet black eyes, with swatches of toilet paper. I could see the sediment from the paper sticking in little balls on her face. Her skin was red and puffy around her nose and eyes. I could hear her honk after trying to clear her nasal cavities as she tried to catch her breath. I could hear her deep irregular breathing; vibrate in a hollow darkness of despair and uselessness from behind the bathroom door. It was such an overwhelming sense of isolation.
So stark, so rare, the picture I envisioned was crippling. Tears streamed down my face, as I leaned onto the bathroom door. My palms spread, one on each side of my head, as if I was waiting for someone to pound nails into them. Gladly you can take me, just let my Mother be all right! Please dear God, let her be safe! I kept saying in my mind. My palms were hot. They felt like they were melting into the blonde woodwork of the bathroom door. If I could just melt my way through the wood door to my Mothers heart and just hold her soul in my hands. I knew she would feel safe and loved, and I pleaded with God again.
We finally got my Mother out of the bathroom and talked her into going to see her Doctor. It was a horrendous day and a big mistake on our part to not search out a Geriatric Specialist. When Mom went for her test with her Family Doctor of 30 plus years, she was only given a 10 questions test. Mom had a good day when she took the test, as she passed with flying colors. From that point forward, there was no more discussion about her memory problems; until total disaster hit when my Father was diagnosed with a Brain tumor.
Chances are high the person you are caring for will get a Urinary Tract Infection, or UTI somewhere along the way. They are extremely common, but can cause some very bizarre behaviors. I suggest you discuss this possibility with their Doctor long before you have to deal with one. Also, ask the Doctor for tips on how to prevent an infection from occurring.
Here is an example with my Mother. Mom was very lethargic, just totally out of it. She slept most of the day, which was unusual for her. She could barely raise her head to look at you and if she did, she could only hold her neck up or keep her eyes open for a few seconds. When she opened her eyes, they would roll back in head and her lids would shut a couple of seconds later. She might try to talk but she could barely move her lips. If she tried to move her arms or fingers you would see her struggle and than just quit in exhaustion. It was horrible to watch.
I thought Mom either had a stroke, or was being overdosed on medications. As a lay person it seemed like the only two possible reasons, and to be honest, a urinary tract infection never once crossed my mind as being the culprit!
I asked the nurse to please check on her and told her I thought Mom may have had a stroke or else was being over medicated. The nurse said very casual, “Oh, it’s probably a UTI.”
“A what?” I asked.
“A UTI, a Urinary Tract Infection. They are very common and do strange things to people.” She said.
I know I must have looked at her like she was nuts, and in my mind she was. “Come on, a bladder infection, get real,” was screaming in my head. “No, I don’t think so. She is not going to the bathroom all the time. She’s just totally out of it like she is being overdosed!” I stated brashly.
“Oh, it’s really common, Lori, and the reactions are so bizarre and different for every person. Their bodies can even start shutting down if it’s not caught in time.” The Staff told me.
“No way!” popped out of my mouth.
“Let me go check your Mom and her medications and see if anything has changed. I’ll also check the med charting to make sure things have been delivered correctly,” and off she went.
A few minutes later, she was back and said all looked fine. Nothing appeared to have been change. She asked, “How about if I get her tested for a UTI, alert the staff to watch her closely and we will see tomorrow what the results are. If it is not a UTI, we will dig deeper. Would that work for you?”
I said, “OK” reluctantly and waited for a call. The next day my phone rang. It was the Nursing Home saying Mom had a UTI and they were putting her on medications to correct the problem. Shortly the side effects where gone and Mom was back to her old self.
The side effects in this situation were extreme, but I have also seen my Mother’s moods change when she has gotten a UTI. She will get weepy, angry, or even aggressive. You never know how their body will react, but checking for a UTI is quick, simple, and an easy fix if that truly is the problem.
Danger Will Robinson, Danger! By Lori La Bey
Like many Alzheimer’s patients, my mother cannot connect the dots anymore. If I told her to point to her nose, she might wiggle her finger, or bend a knee. She cannot differentiate between harm and help. It is like she thinks she is being abused.
Picture yourself sitting in a chair all day long. Your body stiff, and sore. You eyesight blurry, and unclear. You see figures, but can’t make out who is with you or where you are. You know someone is talking, but none of it makes sense. All of a sudden, with no warning, someone grabs you. They are trying to pick you up, move you. Your mind spins. The red flashing light goes off in your head, screaming, Warning, Warning, Danger, Will Robinson, Danger You ask, “Who is there?” but get no understandable answer. The jibber jabber continues, but nothing makes sense. What are they doing? Who is there? Why are they grabbing me? Where are they taking me? Screams your mind. This is when mom’s fear takes over, and she starts to fight. The disease, to me, is about survival and feeling safe.
So think about it. When we get scared, we want to fight or flee. The difference with a person with Alzheimer’s is they cannot run away. They are just left with fight, to survive. When they are not able to connect the dots, it is like speaking a foreign language to them. Add in grooming and generational standards like being naked in front of a stranger and WOW, POW, that’s it. We have to remember their reactions are based on three things: circumstances, conditions and their perceptions. It is not a personal attack on us; actually, it is just the opposite. They are the ones feeling attacked!
Connecting in new ways by Lori La Bey
You know I really did not fully understand the meaning of “Being in the Now,” which is all the talk with Eckhart Tolle, and Oprah, until my Mother’s disease progressed. Living in the now, has allowed my daughter and I to have wonderful times visiting my Mother. It does not make any difference where she is in time or place in her mind. We just play in her playground. I call it my “Playground of Hope.” If Grandma, wants to talk about pink Cadillac’s with spinners for wheels, and sound systems; what is the harm? She is happy. It is innocent fun and a nice break from the “real world.” As adults we all too often forget how to play. Alzheimer’s disease invites us and teaches us how to play again if we are willing to change our ways just a bit. It can truly be a blessing if you let it. Here is perfect example to show how we have lost our ability to play as adults.
Have you ever played with a child with no one watching? It’s just you and them.
It might be something simple like sitting at a table and coloring, or baking cookies, or maybe you are at the park playing. You can feel that special energy take over and absorb into your body and soul. Your spirit feels free. You are totally connected and observant of everything happening between the two of you. Everything seems to be happening at a higher frequency. You recognize your body’s response to all your senses because you have made the time to do so.
The looks, the smells, the sounds, the touches, the tastes are all heighten. Then an adult walks into your space. The energy instantly changes, and both you and the child know you are being looked at, being watched. You are being judged. It makes no difference who walks in; it could be your best friend, or the parent of the child. They are an outsider who has to determine what is going on. “They” are not playing in your playground. You know they are making judgments based on their perceptions. It’s like having this wonderful balloon filled with helium and then someone just pops it. BOOM, everything has changed and you have lost that heightened sensivity.
PASSION ON STERIODS By Lori La Bey
Thirty years of experience has paved the way for me to teach you and others like you what I have larned. What I believe in. What I refer to as my PASSION ON STERIODS: ALZHEIMER’S DISEASE.
I remember vividly at the age of 13, on a beautiful summer day my Great Aunt Mary, did not know who I was anymore. I sobbed for two weeks straight, searching for answers to the pain I felt. How could she not know me anymore? What did I do so wrong that she hates me this much? How could she just wipe me from her mind, her heart, her soul while still knowing others?
The pain of feeling wiped out of her life, can still make me cry. Like I had died in her eyes. At the age of thirteen, I did not understand. The standard answers to my questions back then, were not enough to satisfy me. “Lori, it’s just what happens when people get old,” or “Some people get senile as they age Lori, they just go crazy,” or “It’s not your fault honey. You didn’t do anything wrong.” I remember the blank stare of my Great Aunt’s eyes as she looked at me. Almost as if she was looking through me, like I did not even stand before her.
Ironic as it is, my Mother who tried her best to explain memory loss to me back then, has been living with Alzheimer’s disease herself over 20 years, and has had memory problems almost 30 years. My Mom is 81 years old as of this writing. Over half of my life I have repeatedly said good-bye, and let go as pieces of my Mother disappeared before my eyes.
I did not see this connection at the time, but I have awakened to my role, to see things clearly. My interest in the elderly has always been strong, keen, energizing me, giving me purpose. I saw things, heard things, felt things differently than most. I analyzed and developed programs and materials to assist seniors; most of my life. Addressing Alzheimer’s disease is a natural fit.
The Mother of the Bride by Patty Lien
This is a wonderful story written about my Mother attending a wedding a of good family friend. Thanks Patty for writing it!
Dorothy has been a major part of my life since I was born. She has as well, been a part of the lives of my children. My parents were best friends to Dean and Dorothy; and they built their retirement homes side-by-side. My parents passed away young, and my husband, children and I, ended up being neighbors to Dean and Dorothy. It was Dorothy who hosted my own first bridal shower, and it was only natural that she was included in my daughters wedding preparations and celebration. She had watched her grow all the way from birth through college.
On the day of my daughters, Kelly’s wedding; the gals at Dorothy’s care center took special preparations in dressing her and fixing her hair. All the while, she apparently told them about the wedding. At the Catholic ceremony, Dorothy, who is Lutheran, wanted to receive communion. And she did…not only from the priest, but from each of the four others distributing communion to the congregation as well. Right down the line she went, getting a Host from each of them. And, as she turned to walk back to her pew, with her son Scott helping her navigate; she smiled and bestowed the “Queen Elizabeth” wave to the entire congregation as she passed. She visited and shook hands all the way back down the aisle.
After the ceremony, I went up to Dorothy and greeted her, “You look so pretty today Dorothy”, I said. “Did you enjoy the ceremony?” Without missing a beat, she advised me that, “Of course I did. I’m the Mother of the Bride. Aren’t my children beautiful? I love my children.”
To me, that was one of the “beautiful moments,” of the day. Reality isn’t for an Alzheimer’s patient, necessarily what we perceive it to be. She was happy. That was her reality. The wedding was about love. Being loved, loving others, and sharing a moment with those people in your life that you love. It did not matter that she was confused about which people were her children. She had known each one of them since the day they were born. But in that brief moment, when she was happy and celebrating…she knew she was a Mother. She was a Mother who loved her children, and that made her happy. This is what makes it a beautiful moment. Her reality was complete. She was surrounded by those who made her happy, safe, and loved.
And, if this is your reality at that moment…and you aren’t the Bride…you may as well be the next best thing!
Dignity or Ego By Lori La Bey
A friend and I discussed dignity issues regarding my Mother’s appearance. Her belief, was I should do everything in my power to make sure my mother looks great all the time. “Looks presentable to whose standard?” I questioned. To me today, I look at the word dignity very different than I did even a couple of years ago. I understand the meaning of the word, and in the past I took care of those things that mattered to Mom. I always made sure her hair was in place, her clothes were stylish, and her nails were polished… Although I did not necessarily do all these things myself, I knew they were important to my Mother and so I made sure they were done.
Today when someone asks about my Mother’s dignity, I need to know where the person is coming from in order to answer the question. Is a person stating the word to assure my Mother is well cared for, or is it stated to try to get their needs met, so they are comfortable being around her. Needless to say, my evaluation of the word has adjusted due to my Mother’s condition. Now I look deeper.
Is dignity about alignment with one’s wishes? Does the game plan change when their comfort is now jeopardized? Mom know longer “worries about looking presentable.” Maybe I am defensive thinking people think I do not care, or I am not taking good care of my Mother, due to the way she now looks. My friend who I adore, did not appear to like my questioning of her comment. I Implied, the use of the word dignity was more about making my Mother “look good” to meet others needs to feel comfortable around her. She argued, “No, it was about my Mother’s wishes.” I told her I understand that part, but as this disease progresses, like many diseases do, things change. Things we don’t think about.
I told her, “As Caregivers, I believe we have to go deeper. Are we going to cause them pain and fear to make them look good?” My answer is a steadfast NO! I am not going to pluck ever-wild hair on her eyebrows or chin if it is going to be upsetting to her.” I am not going to have her knocked out and have her teeth pulled and dentures made so they will end up in drawer: as she does not know, she has dentures. I do not even want to take the chance to upset her by telling her that her teeth are bad. My Mother has always been so proud of her teeth. This could be one of those things she chooses to remember, and holds onto, getting angry. What her mind will grab a hold of sometimes amazes me. It would devastate her to know her teeth were rotten.
I also know by leaving her teeth in the condition they are, she will most likely get an infection. This infection could even take her life. But, I know my Mother. I know she can still feel changes in her mouth and it irritates her. I know Mom lost a childhood friend who went to the Dentist and never came home, and my Mother has had a fear of dying in a Dentist chair all her life. I know my Mother does not do well being put under for surgery, and this too could take her life.
There are so many variable to consider as the disease progresses when we make decisions. Each of us must broaden our scope of analysis. In the end, we must make the best decision we can with the information we have. We must let our heart guide us, not our ego. There is no right or wrong. Each situation is different. Each person is different. But, I do think we must look at things from more angles and look deep within ourselves for the best answer for the person we are caring for, and the situation before us.
Doing things to keep my Mother’s dignity was different, easier when she was aware of how she looked. When her ego was intact, she could judge for herself what felt right and what did not. Now, she is fearful of many of the things she used to pride herself on, such as grooming. She is resistant and gets aggressive with people attempting to do certain tasks to beautify her.
Now I have decided to change the rules; to keep her calm, happy, and safe. That is what I believe she would choose if she could.
The Bikini by Lori La Bey
It had been weeks since the sun had been out. There was a softness, a joy, a simplicity that embraced everyone on this gorgeous sun filled day. You could see it people smiles, and in their sparkling eyes. You could hear it in their chatter, feel it in the breeze, and in the calmness in your own heart. Oh ya, there was an undeniable change in the air and the sun was the spark! Nature’s beauty was coming on strong and this was going to be a blessed day. Even my Mother in the end stages of Alzheimer’s disease appeared to sense it.
As I walked into her room I could see her shadow through the drawn curtain. It looked like she was taking a nap. The light sound of her snore confirmed it. As I rounded the cloth divider, I saw my Mother basking in the sun. The curtains were drawn back on the large picture window allowing the sunlight to warm her soul. She looked peaceful and calm. Her breathing was shallow but steady. Her eyes were closed. There was a molded smile on her face. “Good,” I thought to myself. “No fear, No worry, No pain.” I spoke to God and thanked him for the peaceful state Mom was in. I too smiled, and breathed a sigh of relief.
As I looked down from my Mother’s sweet smile, I saw her top hiked up just below her breasts, and her elastic pants, now, way too big due to her weight loss, were just below her belly button. Mom’s full round tummy, was exposed to the warmth of the sun. “Hey Mom,” I said, “Do I need to pull out that bikini for you?” My Mom’s eyes twitched before she slowly opened them and she giggled like a small child and said, “Oh no Lori, I don’t think I should be wearing a bikini.” Then, she giggled some more, closed her eyes, and fell back to sleep. I smiled to myself at her peacefulness, her playfulness, and I was totally amazed she said my name. What a gift my visit at that moment was. She said my name. She knew who I was. I had not heard her call be by name, well I don’t even remember when the last time was. My eyes swelled with tears and my heart started beating faster.
I decided to sit on her bed beside her and just rub her tummy. As I did, crocodile tears poured down my face as my right hand gently rubbed her belly; back and forth, back and forth. Wow, I thought. I knew Mom had been losing weight. Her desire for food was minimal. She could no longer feed herself. Food was peer aid. I knew she was only eating 25 to 50 percent of her food. I could see the weight falling off her when I came to visit and staff would inform me of her weight loss at each conference. But today, today was very different. Here as I sat on her bed rubbing her naked belly I saw what appeared to be a huge hernia. A hernia you could not see before. It looked to be ½ the size of a melon.
Prior to this moment, it was just weight loss. Today it was so much more. The eighty pound weight loss, the hernia, the bagginess of her clothes all said to me,” Mom isn’t going to be around much longer.” This disease is nibbling not only at her mind, her soul, but now her physical body. Alzheimer’s disease was winning the battle. I knew this all along, but today it just felt so permanent, so emanate.
You see, my Mother has been in the Nursing Home since 2001. She was formal diagnosed with Alzheimer’s disease in the mid 90’s but had memory problems since the mid 80”s. You would think I would have a grip on all this by now. But no, I just sat and balled my eyes out, as my heart felt like it had been dropped kicked one more time. How many times have I said goodbye to yet another piece, another phase of my Mother’s life? My life? How many times have I said goodbye to a part of this wonderful woman I love with all my heart? How many more times are left?
The overwhelming sense of loss, the phases this disease has taken bit by bit, hold excruciating pain for me. I continued to weep and rub her belly as I pray for guidance, for peace, for reckoning within my own soul. No amount of time is enough time to deal with the loss of a loved one. Not even if you have years to prepare like I have had. And then with no warning God spoke to me so clearly, “Lori, you have one more connection, one more great story to tell, one more wonderful memory of your Mother. For that be grateful. Today it was the bikini story. Tomorrow is an opportunity for another story. Just embrace the moments. Write them down and share what you have learned. Find the gift wrapped inside the pain. Learn the lessons of the pain Lori. Learn the lessons.” My body trembled and tears poured down my face like a faucet. My shirt was soaked, my eyes were so puffy I could barely see, but my heart was once again full of hope.
As I left that day two things hit me. One, Alzheimer’s disease kills individuals multiple times on multiple levels. You can look at it as painful and one loss upon another; or you can look at it like a cat with nine lives. Each life being different from the last, but each offering much love and comfort. Love is so simple, uncomplicated, and lives within each of us. The lesson is to learn to love on many levels.
Second, a friend of mine once told me she was jealous of the great relationship I have with my Mother. When I looked at her baffled and asked what she meant she said, “My Mother is healthy. She lives out of state and is doing well and for that I am grateful, but I have to admit, I don’t had the beautiful stories and memories of her like you have with your Mom. Funny isn’t it? I’m just not as connected to my Mother as you are to yours, and illness did that for you. Alzheimer’s disease allowed that. It created that gift for you.”
So each day since the bikini incident, I try my best to look forward to embrace each tiny moment with her with love. To thank God for all the gifts in my life, even those that cause me great pain and discomfort. I know each is a memory, each is a piece of her, each is a piece of me that cannot be taken from us. How I choose to look at the world, how I choose to live my life; will determine the memories I create not only for myself but others in my life.
Each day I try hard to look for the opportunities within the obstacles before me. I try to stay calm, peaceful, still; yet alert looking for the clues to remove the pain, the fear, the discomfort for both of us. My goal is to strengthen my ability to do this so I can move forward.
Some days I admit, the chaos wins out. I crumble and cry. I lay broken as the cookie crumbles a bit more, and then another moment passes. Another day arrives, and I feel the warmth of the sun and I am thankful for the nine lives that live within each of us.
Bad Hair Day. We Have All Had Them! by Lori La Bey
Mom used to get her hair done ever week. During a period of one and one half months, I could see her hair was not getting set. It looked “horrible,” but I also was aware that it might be Mom not letting them do her hair anymore. So, I mentioned it to staff. Typically they took care of things right away.
The next time I came, still no change, and so I mention it again to yet another staff person; and than another the next time. At the end of this period, I left a message for the Director of Nursing. Barb got back immediately and said she would look into the “bad hair” situation.
The next day Mom’s hair was done. She looked beautiful. The lesson here is ask, do not blame. By asking nicely, I also found out some major things the nursing home was dealing with. Staffing changes which I could see from my visits, all of which, seemed fine to my eyes. (Just not my Mother’s hair) The Head Nurse on my Mother’s floor was out on leave due to major health issues, a young staff person had passed away, and the beautician had been on vacation for a bit.
All were helpful for me to know, but most helpful I believe, was my attitude of not looking to blame someone. It allowed me to stay calm and not spin out of control over something I could not fix on my own. It allowed me to see the big picture, and say what’s up? What can we do? Is this someway we can get back on track? Or is Mom just not cooperating anymore?
“We” still working on finding out if Mom will sit for a perm or if a set is all she can handle anymore. Things change. We have to learn to stay calm, and ask for more information so we can make an informed decision and do what is best for the person we love.
Mom’s on a DVD ! by Lori La Bey
I go out every month or two with a good friend of my parents, her name is Kay. Proudly I can tell you Kay is an exceptional friend of mine too. I love getting together with her. She is a kind, wonderful woman with a great sense of humor and we laugh a lot. On this particular occasion, I was sharing with Kay my experience of hiring a Music Therapist for Mom.
The Music Therapist’s was Barbra Lee Friedman. I was also lucky to have friend of mine, Nancy, offer to video tape the session. It was spectacular! My Mother responded to the music like a child to the Pied Piper. She Smiled. Her eyes popped open. She was participating, interacting, and ALIVE! I cannot thank Nancy and Barbara enough for this gift. A cherished moment in time, 30 minutes captured for a lifetime.
As I pushed the DVD over for Kay to see the picture of Barbra, Mom and I, Kay gasped. Then she said in a shocked voice said, “Oh my gosh, she looks horrible!”
I broke into a giggle, and as Kay’s eyes pierced mine for a brief moment It was than; I realized another significant shift had taken place within me. I was aware of how it affected me, but never realized the distance it would put between others and me. I continued to laugh and explained to Kay, that I do not look at things the same way. Although I know my Mother’s hair is unkempt and even unruly at times, that her teeth are chipped and discolored, that she might have a few wild hairs on her chin… I no longer focus on her exterior appearance the way I used too. I know longer am willing to cause her trauma and discomfort, so she is easier to look at. Mom doesn’t understand what grooming is about anymore. It frightens her.
So just what do I see? I look at my Mother’s eyes. Are they open? Do they have a sparkle? Is she holding them shut tight in protest? Is she smiling? If so what type of smile? Big and bold? Small and knowing? Do her dimples show? Is she laughing or giggling? Is she grimacing in pain? Are her hands tapping to a beat? Or twisting and tugging like she is frustrated with something? Is she pointing at something for me to look at?
I know longer anticipate what I think she should look like, or what I would love for her to look like. Our connection runs deeper. Safety and Happiness are the primary things I look for, in my Mother now. They are the things that matter to me. For me, all I need to do is slow down, pay attention, and watch my Mother’s signals. To be able to read the signs she is giving me, is important. To be able to bring her joy and comfort, or to be part of a joyous moment with her is precious beyond words.
I am not saying I am right or Kay is wrong. It is what it is, and everyone is coming from it at a different stage when dealing with illness. I can tell you though, it is so much easier for me to see my Mother, knowing I will not be disappointed or looking for someone to blame for my disappointment, because of the standards I set up. Life is so much simpler when I choose to look at things in this manner.
Their filters are gone By Lori La Bey
It is interesting to watch over time how an Alzheimer’s patient looses their social filters. They do not have the ability to see all the different angles to a situation anymore. Nor do they care. Their response can be like tunnel vision. There is only one source of light and it is straight ahead. It is simple and innocent. Here are a couple of examples:
The Roommate –
I remember my Mother being very angry with her roommate. She would boldly yell out in disgust right in front of her roommate, “I HATE my farting roommate! She stinks up the place. I can’t stand it anymore!” and then she would storm out of her room.
This is something my Mother would have never done on her worst day, but today, her filters are gone and she no longer worries about being accepted or hurting someone’s feelings. Those things just do not register anymore. She just says what she thinks and feels.
Finger Foods-
One day I was sitting in the dining room with my Mother as she was eating lunch. Mom got this evil look on her face and I could not figure out why. I turned to see what she was staring at. I still did not get it. There was an elderly gentleman eating his dinner. I did not see anything unusual, so I asked Mom, “Why are you so upset?”
“Look at him. Just look at him eating his food with his fingers. What is wrong with that man? Doesn’t he have any manners? He is disgusting!” she said in a loud and demeaning tone.
I remember thinking, “Wow, now isn’t she compassionate.” Mom never would have been so judgmental and mean. I still wonder if what triggered her anger was that she was worried she too might forget how to use utensils, but that is something I will never know.
The Big O
My Niece, Sarah and I were visiting my Mom. I asked Sarah if she would like to help me rub lotion on a Grandma. It was something my Mom enjoyed as her skin would get so dry. It also made me feel better trying to help and I always felt Mom missed being touched in a loving way.
Sarah was doing Mom’s legs and I was standing behind her doing her shoulders. All of a sudden, my Mother started moaning, really loud. Mom had never responded to having lotion applied to her like that before. Sarah looked up at me in shock. She saw my smirk and then started laughing. I think I said something to Mom like, ”So you really like you massage do you?”
My Mother replied in a very satisfied voice, “Oh ya!” and she continued to moan with her eyes shut.
All of a sudden, we saw a few heads popping in the day room where we were, checking to make sure everything was ok. People smiled as they saw how relaxed and happy Mom was.
It was a good reminder to me, that soothing physical touch is lacking with many Alzheimer’s patients. I continue to carry a small bottle of lotion in my purse, when I visit Mom. The loud moaning only occurred that one time.
Dinner with friends By Lori La Bey
One day my parents went out to dinner with a large group of friends and some acquaintances. The men were at one end of the table the women at the other. A woman my Mother just met asked her, “So Dorothy, how many kids do you have?” My Mother’s face went blank, but she remained calm.
She than looked down the table to my Father and nonchalantly said, ”Dean, how many kids do we have?”
My Father with his quit wit replied, “I don’t know about you, but I have three!” Everyone broke out laughing including my Mother.
The question was answered. No one ever commented on my Mother’s lack of ability to answer such a basic question. Remember, laughter is a great coping mechanism. It is so much easier for us to blame memory loss on hormones, or a “senior moment,” but it might not be the best decision in the long one. Detecting Alzheimer’s disease in the early stages is of great benefit. It gives you more time to get educated, ability to have time to find professionals that specialize in Alzheimer’s disease, it allows you time to process your feelings and develop a plan, and the list goes on and on.
When The Movies Become Reality by Lori La Bey
Polly want a cracker?
I do not remember the name of the show, but I do remember they had a parakeet in the movie. When there was a close up of the bird, my Mother said in a loud voice for all the theater to hear, “Polly want a cracker?” Everyone in the theater started laughing and so of course, she said it again.
I will never forgot the look on my Niece Sarah’s face as she bent over and looked down the row at me, not sure what to do. I smiled and laughed and I think Sarah was relieved to know it was ok to laugh too.
Christmas with the Cranks
This one really through me for a loop. We went to see the movie, “Christmas with the Cranks.” This was a great family movie and all was going along very smooth. Mom was enjoying her popcorn and the movie. Than there was this scene were the whole neighborhood was protesting outside Cranks’ house. The neighbors wanted the Cranks’ to put their big inflatable Frosty the Snowman up on their roof like everyone else did. It was the neighborhood tradition. The next scene was the whole neighborhood standing in the street protesting the saying, “Free Frosty, Free Frosty.”
My Mother, who was not very mobile, hoisted herself up and out of her chair and was standing in our row holding onto the back of the chair in front her to steady herself, yelling, “FREE FROSTY, FREE FROSTY!” with the neighbors.
The entire theater burst into laughter, which of course egged my Mother on, and I was not sure she was going to sit back down. The scene seemed to last forever but when it did change, she sat down, beaming with pride that she had taken a stand for justice. For that, I was thankful. No harm done, and everyone had a great story to tell when they left the show.
The Bald Chicken Story by Lori La Bey
This story may seem weird and trust me when I woke up at 3am, I was thinking the same thing, but I knew it was important and I had to write it, so I did. This is a story of how I see the process of Alzheimer’s disease being like a bird being de-feathered; plucked of its will, and passion for life, one feather at a time.
Let me explain what I mean. Let’s look at a chicken’s life:
- From a cute chick, which cracks from its shell, the small innocent life brings us pleasure.
- To the hen that gives birth, directs, and protects her clan.
- To the mature chicken deemed ready for slaughter, so we may feast and enjoy its goodness.
As each feather is plucked from the chicken, it unfolds a new image in my mind.
- At first, a feather is gripped, the chicken is uncomfortable, but all is manageable. No real harm is done, though the chicken feels danger is looming.
- Then a tug and a pull, as a single feather is plucked from the chicken’s skin. The pain is sharp but short-lived; those around do not even notice the change.
- At times, a handful of feathers are ripped out from the chicken all at once. The pain takes a voice. The bloody exposed skin shows definite signs of change. There is no hiding the red dimpled bare spot from others or from one’s self anymore.
- As the disease progresses, the bare chicken wanders on the outskirts of its community– uncomfortable, self-conscience, and downright angry at times. There is loss of hope. One day the chicken decides to jump off the cliff of community, down into the ostersized ravine.
- The chicken now lives in a new world, preparing to leave its perceived home. There is calmness within. It no longer tries to verbalize or communicate to others its need for love and acceptance in our world. Unconditional love, and compassion are now fulfilled by those in the ravine with the chicken. Those who are like the chicken. The passion to belong outweighs the benefits the chicken receives in our world.
- The next stage for the chicken is death. The chicken is not frightened, but loved ones and acquaintances encounter one last crossroad with the disease. Here we have one last choice. Which path will you take?
- The “Path of Pity” for the chicken’s life? A path which rejects the sacrifice the chicken has burdened for our benefit. Or The “Path of Celebration and Healing” on behalf of the chicken? All it has been. All it has been through – the memories, the lessons taught, the tears, and the laughter. Here on this path, you can choose to savor and feast what the chicken has left you. The gift of life. The gift of new perceptions of what is truly important.
What path will you choose?
The River of Denial
Illustration by Harry Pulver of Artworks
Story by Lori La Bey
Keep in mind, when dealing with Alzheimer’s disease, you will find the River of Denial will slap you in the face at times. It will not let you float along, enjoying the sunshine, or the beauty of the day. It has to flip your boat into the darkness. Your body goes into shock as the freezing cold, brutal waters of truth, eat you alive.
It seems everyone deals with these times differently. Some swim to shore and regain control. Others tread water, looking for someone, anyone to save them. Still others drown in their sorrow and loss, never coming to grips with the reality at hand. Just know these times are out there. They are normal, and you will never know how you are going to react, let alone others; to a given situation. Try to stay calm. Be patient. Be persistent. This too shall pass.
THE SAND TRAP
By Lori La Bey
I grabbed my five iron from my golf bag, turned, and walked towards my ball. The smell of fresh cut grass filled my nostrils. The stark contrast of the deep, rich, green grass, nestled up against the bleached white sand, looked beautiful, yet nothing compared to what my eyes saw next.
My mother, a large woman in her sixties, with short, salt and pepper curly hair, lay on her belly, in the sand trap. Her big arms stretched over her head. Each finger towered to the knuckles with diamond rings, one on top of the other, ending in a tip, of perfectly applied red polish. Her cupped hands, trapped the sand as she pulled her arms down and around, in perfect breaststroke form.
I watched in amazement. The sand swooshed loudly in my ears. I could hear each grain of sand, scraping against one another as she swam. Her head turned sideways, as she took in a breath of air, and then rotated her head back into the sand, slightly raised, to adjust for the texture. The confidence and calmness on my mother’s face, shined like a beacon of light, on a pitch black summer evening. She swam in the warm sand to safety. My mind flashed back about twenty years, remembering my mother had always been a great swimmer, and I saw her old Lifeguard was still strong and intact.
My God, how are we going to get her out of there? She really thinks she is in the water. I thought to myself. Sadness hit me for a brief moment, and then the humor of the situation touched my heart like no other time in my life. I smiled and laughed as I watched her in amazement. My mother’s child-like state of mind was rescuing her. She felt safe and in control in this imagined place, in the water. The faith, belief, and power she appeared to hold in this moment was incredible.
“Mom, can I help you up?” I asked, as I continued to watch. She abruptly stopped swimming. Her face looked confused as I brought her back to reality. We were golfing. She had fallen in a sand trap. “Are you ok? Let me help you up,” I said in a soft voice accompanied with a warm, friendly, smile. She seemed to connect with both immediately, and smiled back at me. “Ok, Lori. That would be good.” Then she burst into laughter, not just a giggle, but a hard solid belly laugh. Her eyes were joyful yet glistened with tears, and, as my mother lay on her stomach in the bleached grains of sand, she seemed to realize for just a second how comical life can be.
Spa Day at the VOA By Lori La Bey
Illustration by Harry Pulver of Artworks
I remember Valentines Dinner, at Red Lobster the year my Dad passed away. My Mother, Dorothy, looked beautiful. Her hair was perfect. Her favorite perfume filled the air and she of course was wearing red, her favorite color. Mom, boasted to all at dinner about her spa day at the VOA, code to the rest of us: Volunteers of America Nursing Home. She bragged about doing her own nails, which we knew Chris the beautician or Bobbie in activities did for her, but it really did not matter. Mom looked great and felt wonderful.
During dinner with eyes glistening, a broad smile, and pride beaming and bouncing from her, my Mother proceeded to tell us all how staff hoist her above the whirlpool and lowered her gently in to soak. You could see her mind melt as she told of the caressing jets pumping lightly against her body.
All I could visualize was a crane like machine lifting my Mother, a large woman of about 280 pounds into a whirlpool tub. As I bit my checks to stop from laughing, I noticed the rest of my family doing the same. For us, this was no relaxing spa like treatment, but to my Mother it was the cat’s meow! The peace and calmness lit up her face and impressed us all. At that moment we all wanted a little of what she had experienced.
Mom was actually trying to make us all jealous of her luxurious life. It was fantastic how much she loved her home. Her resort.
In this particular stage of Alzheimer’s disease, my Mother could sometimes still grasp the big picture. She could connect the dots. She understood her arthritis made it difficult for her to get in and out of the tub and the hoist allowed her the experience where she could sit, soak, and enjoy. What her mind chooses to hold onto at times amazes me.
Dinner with Harold By Lori La Bey
One evening as I was speaking to the Alzheimer’s Family Support Group, at my Mother’s Nursing Home, I was greatly surprised by a story from a family in the audience. You see I was there as a family member to tell stories of adjustment as my Mother progressed through the disease.
A woman who was sitting with her children raised her hand towards the end of my talk. I was expecting her to ask me a question, but instead she said, “I just have to thank you for your Mother. She has been a gift to my family.”
Mom got along with most people, so I was not surprised she helped them adjust to placing her husband in the Nursing Home. Mom loved her Nursing Home!
The woman went on to tell a wonderful love story of how my Mother and her husband become good friends, like partners. How their friendship made it easier for her husband to adjust to his new home. She told of how they would all eat dinner together, this man, his wife, the kids, and my Mother his girlfriend. The whole family was so sincere, so gracious, so full of love for this man, wanting him to be peaceful, happy, settled in his new home.
I can’t even begin to imagine the mixed emotions the wife must have had. Yes, a true blessing for her husband to have a void filled through my Mother, and yet how painful it must have been to be replaced by a new woman. I believe his wife’s love paved the way for her children to accept this path, this journey.
No matter how strong and rational we are, the emotional difficulties of Alzheimer’s disease can be a very scary roller coaster ride. The story this family shared was a true gift not only to me, but also to others there that night. I love how they chose as a family to put their Dad’s interest first, pushing their ego’s aside. I applaud this family’s ability to lead by example. Kudos to you all!
SO WHY IS A NAME SO IMPORTANT ANYWAYS? by Lori La Bey
When people ask me the question “Does your Mother know who you are?” what they are really asking, is does my Mother recognize it is me, Lori, her daughter. Some are asking to get an update on how she is doing, others to give me permission not to have to go see her. No matter what their reason, my answer has never varied. I always say, “When did a name become so important to us?”
Second, I tell people, “I don’t test that theory anymore. Why would I? I have a 50/50 chance at best my Mother will get my name right. Why would I take a chance of her being wrong and wrecking her day and mine? What is important to me is that my Mother feels safe and comfortable with me, and on a very good day, we can laugh together. My focus is to keep her comfortable and calm, and by doing that she likes being with me. It does not get better than that! It is about quality time together.”
Now, I want to share with you a story about being recognized, and acknowledged by my Mother.
For a long time my Mother would introduce me to her new friends at the Nursing Home as “Her Mother.” She would go on to say what good care I take of her. At first, I was taken back, but just said to her friends “Hello,” shook their hands and said, “and please, just call me Lori.”
Most of Mom’s friends at the nursing home went with the flow, if they noticed or not; there was no way I could be Mom’s Mother; but one woman did notice, and she was not going to let it slide. She would correct my Mother ever time yelling, “Dorothy, that’s not your Mother! It’s your Daughter!”
My Mom would look at me. I would smile back at her; and she would turn back to her friend and say, “Well, what do you expect? You know I have Alzheimer’s.” Everyone would laugh, except the woman who tried to “fix” my Mom.
My old brother, Mark, asked, “Doesn’t it bother you that Mom doesn’t know you anymore?”
I told him, “No not at all. In fact I see it as an honor to be called her Mother.”
Mark looked at me funny and said, “What do you mean?”
I would remind him that Mom did not have a good relationship with her Mother growing up, and I felt it an honor that she has healed that relationship through me some how. She now was proud of her relationship with her Mother. How cool is that!
Mark, still has a difficult time seeing the “honor” in being called someone else. He gets frustrated when our Mother calls him “Chuck,” her brother. I have tried to explain to him Mom is back in time. We probably do not exist in her mind. She is in a time before we were born. I have told Mark that he looks like Uncle Chuck when he was younger. That Mom loved her brother, but his ego is crushed thinking it is about him; and it is not. It is about circumstances, conditions, and Mom’s perceptions. It is just that simple. People with Alzheimer’s disease do not call us the wrong name to make us mad. I don’t believe, their mind could even grasp that concept.
You know I really did not fully understand the meaning of “Being in the Now,” which is all the talk with Eckhart Tolle, and Oprah, until my Mother’s disease progressed. Living in the now, has allowed my daughter and I to have such a wonderful time visiting with her. It does not make any difference where she is in time or place in her mind, or if she knows us by name. We just play in whatever world she is spinning in. If Grandma, wants to talk about pink Cadillac’s, with spinners for wheels, and sound systems; what is the harm? She is happy. It is innocent and fun. It is a nice break from the “real world” sometimes.
Fun at the movies by Lori La Bey
This was hilarious and took us all off guard. Tom, my husband at the time, and I took my Mother to the Halle Berry movie. It was a great movie and all went very well until we got back to the Nursing Home. One of the staff asked Mom how the movie was and my Mother giggled and replied in a loud voice with a big smile on her face, “They took me to a PRONO FLICK!”
Tom and I burst into laughter looking at my Mom, and than one another, and than the staff. I of course piped up quickly saying we did not take her to a porno flick, but mentioned there was one sex scene in the movie, which apparently grab my Mother’s attention. Who would have thought out of all things she would remember was one brief sex scene! The staff smiled and knew all was fine, but we still chuckle about that day.
End Stages of Alzheimer’s – Still Connecting A Music Therapy Miracle
End Stages of Alzheimer’s – Still Connecting A Music Therapy Miracle
By Lori La Bey of Senior Lifestyle Trends
I am so excited to share with you another ditty of my Mother in her end stages of Alzheimer’s and the possibilities of connections. I was blessed to have come into my life a woman by the name of Melissa Hirokawa, the owner of Living Spirit Therapy and a board-certified Music Therapist. Melissa took time to show me her wears as a professional, and even with my Mother in her end stages of Alzheimer’s, she was able to bring Mom out of her shell and bring her Joy.
Melissa is not only a Music Therapist but a speaker who presents locally and nationally on the many benefits of music therapy with the elderly and those with medical issues. Informational and experiential presentations include music therapy with specific populations such as dementia, stroke, fibromyalgia, hospice and palliative care, and intergenerational programming among others. Melissa is also available for self-care workshops for family members and long-term care and medical staff.
Here is a link to Melissa’s business Living Spirit Therapy
http://www.livingspirittherapy.com
You can go to our YouTube site to see more videos at:
http://www.youtube.com/user/AlzheimersSpeaks#p/u/5/75nIIciQM0o
- Dancing Hand 3
Thanks Kim. I have a lot more stories to tell and will be posting hopefully daily!
Your blog is awesome. Good work!
Thanks, very informative.
mmm I think its great!! thanks for the story.
Hello Lori
I was moved by your opening story about visting your mother and not being able to communicate with her.
Some time ago I made a nature film and have been advised recently by a leading UK based Occupational Therapist (OT)that our nature film which was originally created to help people cope with stress is also helping patients with Sensory Problems, Autism, Dementia and is very beneficial to their carers and therapists in a number of ways. When I quizzed the OT how it helped one of the main areas mentioned was watching it reminded the person with dementia of nature and happy experiences and created talking points. As you know emotion stays in tact with Alzheimers so all the different, animals, river scenes, flowers and coastal clips etc creates many opportunities to talk about memories.
You can see a 3 minute clip on our website and we supply the DVD in all formats, the main film runs for 57 minutes. It might be a useful tool. Also as there is no real story, people or voiceover it doesn’t cause confusion. Let me know if you use it please.
Good uck and try and have a Very Happy Christmas
Barry
Hi Barry
I will check out your site a bit later today. I don’t beleive I have seen it yet. I will also add you as a resource to me Alhzimer’s speaks resource website at
http://www.Alzheimersspeaks.com
Thanks We will chat soon!
Lori
Lori,
I read with great pleasure your stores. I am a senior move manager – i would like to add your website as a resource on my website. It’s nice for those visting my site to have other links to go to.
Do i have your permission to do that?
Becky
HI Becky,
I would be honored to have you list me on your site!
I will also add you to my resource website Alzheimer’s Speaks unless I hear different from you. I feel the more we link to one another the better off we will all be. If you want to check it out and maybe add that link too feel free. Here is the link
http://www.AlzheimersSpeaks.com
If you have a brochure or pdf you want to send me I can add that to your listing as well. I look forward to hearing back from you
Thanks so much for checking out the blog!
Have a great holiday season.
Lori La Bey
Thank you Lori. I like your Blog it is a real slice of life and helpful too.
Joe
Thanks you Joe. It’s so nice to get feedback from people. I appreciate you taking the time to write.
Hope you have a wonderful New Year!
Lori
Sunday, February 14, 2010
I’m 50 and have been taking care of my mom, Joanne for two years now. I’m her youngest son and my brother, Rob, is two years older than me and lives in Seattle, WA.
I really don’t know where to start only to say that this site showing up was nice. Mom is not moving or eating or really doing anything anymore but occasionally will have shocking moments of clarity. I’m torn with calling Hospice or what. Anyway this site helped just to be able to tell someone that I’m here with our mom watching her gently go and I just don’t know anymore what I’m feeling. Thanks for being there.
~ Bill, St. Louis, Missouri USA
HI Bill
I’m so glad you found the site. We have a great community here. Many of us are going through the process other’s, others are just beginning their journey, and then there those that have seen it through to the end. If you are not sure about hospice, I would give them a call and ask them. Be sure to ask on cost.
You may find some of the other posts and comments helpful. Also, you might want to read some of the stories. I think I understand the feelings you are going through. My Mom is in her end stages and it is hard to know how long she will last. This past month she has lost 10 lbs. Music seems to make her smile so I like to make she her favorites are playing.
Feel free to pose a question or make a comment on something you at struggling with or found an answer too. We are all ears here trying to help one another through this maze of a disease.
Good Luck
Lori
This is certainly my initial stop by and I really like what I’m seeing. Your weblog is so much fun to look over, quite compelling as well as informative. I’ll undoubtedly recommend it to my friends. Nevertheless, I did have some problem with the commenting. It kept giving me an problem whenever I clicked on publish comment. I hope, that can be fixed. Many thanks
HI Mitch
Thanks for the feedback!
I am sorry you had a difficult time commenting. That is the first I have heard a problem on that so I’ll be monitoring the situation. Usually wordpress is pretty user firendly and that was one of the main reasons I decided to use this platform. I appreciate you taking the time to fight with the technology to comment! 🙂
Lori
Interesting article. Were did you got all the information from… 🙂
Wow! Thank you! I always wanted to write in my site something like that. Can I take part of your post to my blog?
I have no problem is you take part of the post as long as you give credit to our site and direct them back her for the full article. http://www.Alzheimersspeaks.com
Thanks Lori
Your blog is good. Good work!
This a very good writeup by you looking forward to read more really soon.
Thank you so much for you comment. I look forward to chatting with you in the future.
Lori
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Thanks for stopping and I hope to hear from you again
Lori
Very informative article… Looking forward for more articles on your blog
HI Tyson
I appreciate you taking the time to write. I look forward to hearing from you again.
Lori
Interesting article. Were did you got all the information from… 🙂
Glad you like what you’ve read. Most of the stories are from my personal experience with my Mother who has struggled with memory loss for 30 years. She is now in her end stages of the disease. I also gather great information on the internet and just try to spread the word of positive change and that which gives hope to others.
Take care and thanksfor visiting us. I hope you decide to come back often.
Lori
Incredible! Your site has a ton comments. How did you get all of these viewers to view your site I’m envious! I’m still getting to know all about posting information on the internet. I’m going to look around on your site to get a better idea how to attract more people. Thanks for the assistance!
HI Ayesha
Thanks for you comments. I checked out your site on backlinks and found it interesting. I like the concept!
Lori
A really helpfull article – A big thank you I hope you will not mind me blogging about this post on my blog I will also link back to this post Thanks
This is very fascinating, You are a very professional blogger. I’ve joined your feed and look forward to searching for more of your wonderful post. Additionally, I have shared your website in my social networks!
Thank you!
Lori
As a rule, I don’t find myself making comments as I’m doing now one but this particular post truly hit a nerve for me. I’d like to offer compliments on your sensitivity and a big thank you for your admirable efforts on this blog.
Thank you for your comment and taking the time to write. It means a lot to me that others find value in the site.
Lori
Nobody expends the energy to go into such depth when writing on blog. I thank you for doing so.
I like the valuable information in this blog.Thanks!
Nice Post!
Nice Post!
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Thanks Carol
Wonderful story it is without doubt. My mother has been looking for this info.
Glad you liked it!
I love it!
Thanks!
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Thank you!
self help pro educates Neuro linguistic programming approaches to families
I really enjoyed your blog, I totaly agree with your assesment here
Thank you for writing
Lori
Good blog. Plenty of helpful information here. I was looking for this.Thanks for sharing!
Witty! I’m bookmarking you site for future use.
Thanks Justin
Lori
Can I just say what a relief to find someone who actually knows what theyre talking about on the internet.
Glad you liked the blog Virgil
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Thanks Paul
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certainly like your web site however you need to test the spelling on several of your posts. Many of them are rife with spelling problems and I to find it very bothersome to tell the reality nevertheless I’ll definitely come again again.
Sorry you found so many spelling errors. I do not have an editor review these as it is just me out here doing my thing advocating for the disease. I try to check for them,but not all writing is mine either and those I do not check, especially the ones written by people who are memory impaired as that is par to the purpose to show how things can change.
Thanks for taking the time to write
Lori
I have really enjoyed reading your well written article. It looks like you spend a lot of effort and time on your blog. I have bookmarked it and I am looking forward to reading new articles. Keep up the good work!
HI Jaqueline
Thanks for taking the time to write. I always appreciate hearing your thoughts.
Lori
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HI Sylvia
I appreciate you taking the time to write us!
Lori
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Hi Sondaj
Thanks for your comment! I appreciate you taking the time to write.
Lori
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Thank you Tanisha!
Enjoy your day
Lori
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Thanks so much for your kind comments!
Lori
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HI Julie
I appreciate you taking the time to write. glad you enjoyed the blog.
Lori
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Thank you Brooks for your comment
Lori
I think that talking about that is good idea.
Thanks for your comment Kraje. I totally agree.We need to talk about this stuff.
Lori
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Welcome to the blog. Hope you comeback often
Lori
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Enjoy the holiday season!
Lori
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You can certainly see your expertise in the paintings you write. The arena hopes for more passionate writers like you who aren’t afraid to say how they believe. Always follow your heart.
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Lori
Thnkx.
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Lori
WONDERFUL Post.thanks for share..more wait .. …
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you’ve gotten an awesome blog here! would you wish to make some invite posts on my blog?
Yes you can follow me on twitter at AlzSpks
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Thanks Julio!
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Lori
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Lori
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Thank you
Lori
Generally I do not learn post on blogs, however I would like to say that this write-up very forced me to try and do it! Your writing taste has been surprised me. Thank you, quite great article.
Thank you for writing. I’m so glad you like ti here at Alzheimer’s Speaks. If you have not checked out our resource website, I suggest you do so at http://www.AlzheimersSpeaks.com
Lori
I just want to say I’m all new to weblog and definitely enjoyed this blog. Almost certainly I’m likely to bookmark your website . You definitely come with good articles. Thanks a bunch for sharing your website page.
HI Joseph
Thanks for taking the time to write. I really enjoy hearing from my audience.
Lori
I would like to take note of this post, “Stories Alzheimer’s Speaks Blog” on my very own webpage. Do you care in the event I actually do? Many thanks ,Wilfred
HI Wilfred
Feel free to refer to the post. I would appreciate a link back to the original post though.
Thanks
Lori
This is the turn Stories Alzheimer's Speaks Blog diary for anyone who wants to assay out out nearly this substance. You remark so often its almost wearing to fence with you (not that I truly would want…HaHa). You definitely put a new twisting on a topic thats been shorthand some for eld. Metropolis substance, simply outstanding!
Thanks for writing. I appreciate your comments
Lori
Thank you for the auspicious writeup. It actually
was a leisure account it. Look complex to far added agreeable
from you! However, how can we keep up a correspondence?
Thank you
Lori
page Iam so glad i found pages of lovely stories i have been caring for my husband for over 13yrs now sadly 18mths ago he had to go into a home -he has picks disease things were getting hard i was exhausted and he was getting harder to care for ,but ifeel i have let him down badly i feel very guilty for what i have done although i had the backing of my 2 children it does`nt help i visit him 3 times a week and want to cry when i leave i find life very lonely without him .
Pretty nice post. I just stumbled upon your weblog and wished to say that I
have really enjoyed browsing your blog posts. After all I’ll be subscribing to your rss feed and I hope you write again very soon!
HI Chi
Thanks for taking the time to check us out and write
Lori
I really like it when individuals come together and share views.
Great site, stick with it!
Me too Rosie. That is why I love my job so much 🙂
Lori
I have just recently been introduced to this web group and thought it only fair to share my story. My father introduced me to ALzheimer’s about twenty years ago. The years all blur together after a while. He told me he had been diagnosed with Alzheimer’s. I did not live near him – me in Ohio him in Florida with his wife. So, I really did not see the signs. His loving wife was his sole caretaker – Angel that she was. I noticed oddities during our phone conversations such as getting lost in conversations. He visited a few times until it became too dangerous to travel. He began sending me cash in the mail. I think he had lost control of the finances, but he still wanted to take care of me. He had been very successful in business, and had a comfortable financial position. His incredible business acumen was a far cry from his current mental state. It was a sO very heartbreaking. I visited him several times, and then he went downhill very fast. The last time I visited him was in the nursing home (he had started wandering the streets at night forcing his wife to put him in a locked facility). He couldn’t speak except for a few words. He didn’t seem to know us, but he once started crying when one of the nurses told him he had a lovely daughter. So I think he knew me on some level. He also became very mean (totally out of character). His last words to me when I was feeding him were “please.. …..”. I think he wanted to be released from his situation. He could hardly sit in the wheelchair. He kept falling out of the chair. I prayed for God to take him. I was so relieved when he died. It’s only been in the last couple of years that I can remember him as he was before the disease.
I have also been the sole caretaker of my mother who is dying from Chronic obstructive pulmonary disease. So I have seen some of what caretakers do.
About 9 months ago at age 58 I was diagnosed with mild to moderate dementia of a vascular origin. My daughter initiated the testing. She had become very frustrated with me because I became so forgetful and had a great deal of difficulty speaking with her because I lose my train of thought frequently. I also wander the house because I forget why I am going into different rooms. This happens to a lot of us as we age, but it was happening to me all the time. I had all kinds of tests, 6 hours of psychoneurologist testing, brain scan and brain magnetic resource imaging. The psychoneurologist report was 9 pages and it was devastating. My neurologist had little to say except that I don’t have Alzheimer’s, but I have areas of dead brain cells. He gave me a one year prescription for Aricept and sent me on my way. The medication has helped quite a bit, but I have no idea where I really stand, especially since he told me I have a different form of dementia than what you usually hear about. I do have the support of a wonderful psychiatrist, but I think he really doesn’t know what to say.
So that’s where I’m coming from. I feel very lonely, confused, and useless since I can no longer continue the promising career I had started 10 years ago. I have put together a few compensatory things to help me. I write everything down, have a GPS in my car so I don’t get lost, and I’m struggling to get alternative care for my mom.
Thanks to all who take the time to help care for those of us who have difficulty taking care of ourselves.
Paulan
HI Paulan
Our story is a powerful one. Thank you so much for sharing it with us. I’m so glad you found us here!
Lori
Oh my goodness! a tremendous article dude. Thank you Nevertheless I am experiencing issue with ur rss . Don’t know why Unable to subscribe to it. Is there anybody getting identical rss drawback? Anyone who is aware of kindly respond. Thnkx
HI Maggie
So glad you liked the stories section of the blog.
Lori
Lori,
What a wonderful website! Thank you for offering this resource to others who are in need and traveling this difficult road. My book, Motherhood: Lost and Found, was recently published and is about my own mother’s journey through Alzheimer’s. Would you have any interest in publishing an excerpt from it?
Ann
http://www.anncampanella.com
Hi Ann
Not only would I love an excerpt for the blog, but lets chat and get you scheduled to come on the radio show if you are interested.
Lori
Lori,
Thanks so much for getting back to me so quickly. I’d love to do that. Can you email me at awcamp@bellsouth.net?
Ann
will do!
Lori
This may sound crazy but I took my Granny to Transylvania.
After caring for my 94 year-old grandmother with latter stage dementia at home for two years, I relocated her four months ago to full care nursing home in Transylvania, Romania. I visited her everyday for the first two months in order to make sure everything was going to be fine. She has settled-in better than I could have imagined, she really enjoys her coloring and knitting. Now I’m back in the States and Skype with her regularly, not an easy decision for the family to make the move, however, in hindsight it was a better option than the “spend down” approach and lose the house. (Which is now rented and provides supplemental income for her.) The strain of taking care of her along with raising three kids under 10 years old was too much for us. The idea of selling the house and spending the money down to afford state care didn’t seem like a feasible option.
Here is what I found:
Room, Meals and Medications.
-$2250 – $2500 per month.
-24 patients 16 staff.
-24 hour care.
-Skype available.
-Video cameras in common areas.
-Food prepared on site (good food!)
-English Speaking Doctor, Nurses.
-Activities: Coloring, Painting, Crocheting,
-Music and Games.
-Modern newly constructed building completed with EU funding.
-Safe serene neighborhood, nice views.
Feel free to email me if you would like to know how we did it. Dave_duce@hotmail.com
http://www.aarp.org/relationships/caregiving/info-10-2010/the_high_costs_of_caring_for_alzheimers_patients.3.html
http://www.alzheimers.net/2014-01-16/traveling-abroad-for-alzheimers-care/
HI Dave,
I have heard others talk of this for medical work ups, but not for long term care. Thanks for the info.
Lori
What a beautiful website. The stories are so full of love, wisdom and caring. I too experienced Alzheimer’s with my Dad, Max. Max was a very strong man, coming to the United States in 1952. Fast forward to 2000, when he began to become slightly forgetful. In 2001 his forgetfulness stepped in and began to take over. By 2003/2004, my Dad was, many times, somewhere else. On February 10, 2005, my Dad passed away. As I look back over the last five
years of his life, I realized that I was losing the man I knew as my Dad and when he passed away, I came to the understanding that with Alzheimer’s you lose your family member twice. The first time when they are still living and
sitting right in front of you. The second time when they leave earth for a final heavenly home. I miss my Dad. I loved my Dad and I still do. Thank you Dad for everything you did for our family. With love, Betty.
Hi Becky
Thank you for exploring our blog and sharing a piece of your precious life with your father with us.
Lori La Bey
Thank you for sharing your story, Lori. It is never easy to talk about one’s own difficult experiences. And, seeing a parent live with Alzheimer’s can be one of the most difficult things to go through. But, your story helps a lot of people going through the same thing identify and feel less isolated. I would also recommend seeking home care services because it is never easy to care for a loved one alone, while also needing to fulfill all your other responsibilities. There are excellent skilled nurses who can offer you just the support you need to make life a little easier and give you more opportunities to create positive memories with your loved one.
Thank you Angelina,
Fir taking the time to write. You are correct home care services can be of great assistance to those who caring for a loved one with dementia.