Lessons - Alzheimer's Speaks

You Might Be In Denial

Or Burnt Out As A Care Partner If…

By Lori La Bey, founder of Alzheimer’s Speaks

Sometimes I wonder who has dementia, myself included.  As Care Partners we are the ones whose executive function is supposed to be intact.  We are the ones who are to be logical and understanding…   But I’ve found caregiver denial and caregiver burnout looks very much like dementia.  Here are some signs you might be a Care Partner in denial or burnt out!

You Might Be In Denial Or Burnt Out As A Care Partner If…

You call a person with dementia to remind them of an appointment and then wondered why they aren’t ready to go or miss the appointment… Because they have a memory problem!

You Might Be In Denial Or Burnt Out As A Care Partner If…

If you try to argue with a person with dementia…  Because you know darn well someone with a cognitive impairment can’t always process information logically.

  You Might Be In Denial Or Burnt Out As A Care Partner If…

You have given someone with dementia directions to the bathroom and found out later they got lost and had an accident and then got mad at the person…  Because you didn’t connect the dots that you may have been able to avoid that embarrassing situation for them and you by assisting them to the restroom.

You Might Be In Denial Or Burnt Out As A Care Partner If…

You ask someone with dementia a complex question and then are surprised when they get angry or look at you with a blank stare…  When you know it’s best to break things down into 1 or 2 simple steps.

You Might Be In Denial Or Burnt Out As A Care Partner If…

You snap at someone for repeating the same thing over and over… When you know it’s new to them each and every time!

You Might Be In Denial Or Burnt Out As A Care Partner If…

You finish a sentence for a person living with dementia because it was taking them way “TOO LONG” to state their thoughts and then were surprised when they either pull out of the conversation or got mad at you for seemingly no reason…  When we all know most people with dementia need a few extra seconds to process their thoughts.

You Might Be In Denial Or Burnt Out As A Care Partner If…

You direct all your questions and comments to the Care Partner while ignoring the person with dementia and then wondered why the person with dementia becomes withdrawn and non-responsive…  Knowing that all people want to feel valued and validated, even those living with dementia.

 You Might Be In Denial Or Burnt Out As A Care Partner If…

You spoke to a person with memory loss in a loud tone and slow pace… Because apparently you can’t differentiate the difference between being hard of hearing and having dementia.

You Might Be In Denial Or Burnt Out As A Care Partner If…

You told someone with dementia they can’t drive anymore getting into a big fight with them…  As you held tight to not validating their feelings of loss of independence because you were totally focused on your own feelings of guilt and grief of the changes in your relationship.

Yes, sometimes I wonder who really has dementia… Don’t you?

Caregiver Lessons

1                    Realize you cannot control everything, really not much of anything, except how you react to things around you.

2                    A person with Alzheimer’s has lost their ability to choose how to engage others.  Their reactions are not meant as a personal attack against others.  In fact it is never about us.   Reactions are based on circumstances, conditions, and  perceptions no matter who we are.

3                    The PRIDE Principal™ –Preserve, Respect, Independence, Dignity for Everyone, everyday.

4                    Make a checklist of tasks to do, than make a list of how each task makes you feel… Be honest…Oh what you will find out about yourself!   It can hurt sometimes, but you must be honest to move forward.  Ask for help when you need it.

5                    Remember, Done Is Better Than Perfect!  Don’t try to do it all yourself. Allow others to do it their way too!

6                    Make Opportunities out of Obstacles.  It’s ok to ask for help.

7                    When caring for someone you always must start and end with yourself.

8                    Look through a child’s eyes... the innocent non-judgmental view point.

9                    Remove your ego. 

10               Embrace the child they have become.

11               We are our own worst enemy – Don’t listen to the Inner Critic, especially when exhausted!

12               Schedules, consistencies, and patterns set up early can be a valuable tool as the disease progresses.

13               Remember, a name isn’t important.  It’s our connections that count.

14               Negative Energy spreads just as fast when you are caregiving, even when you think they do not have a clue!

15               Old Habits are hard to break, even with an Alzheimer’s patient.

16               Doing a task doesn’t mean you solved the problem.

17               Tread lightly when looking to blame others or yourself.  In the long run it does more harm than good.  Try to look for the reason and than see what changes can be made if any to correct the outcome.

18               Modeling a behavior to a person with Alzheimer’s disease is simple and can be very effective.

19               Quality of Life is an issue you will most likely address many times on many levels.  Keep in mind there are rules and regulations that must be followed, and those that just have to be stated and noted for the governing agencies.

20               Focus on increasing the simple quality of life issues that arise in everyday living.

             Live To Be PLLAFULL – Allows you to visit out of LOVE, not guilt.

            Powerful Last Lessons of:   

             Acceptance Forgiveness Unconditional Love and Letting go.

21.           Breathe deeply, count to 10 before you react when your feeling pushed to your limit.

22.          When you live life with the compassion and passion, you will be able to create remarkable moments and discover the pure goodness within yourself and others as you connect on a new level of consciousness.

23.          Lead by example to show others the way.

24.         Hospice is something to be embraced, not pushed away.

25.        Alzheimer’s disease is 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.

26.       When you understand where the anger comes from, then and only then can you change your approach and be effective in reducing combative behaviors.

27.      Be open to evaluating your relationship and what love is and means.

28.      Their Social Filters are Gone – 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.

29.     It is important to understand and recognize the concept of the Bald Chicken.  Refer to the story for details,just put “Bald Chicken” in the search box

30.    Learn to love on many levels.

31.    How you choose to look at the world, how you choose to live your life will determine the memories you create not only for you, but others in your life.

32.   Every now and then it’s time to reevaluate having an outlet to process this disease with others in a safe environment, with  caregiver peers at An Alzheimer’s Support Group.

33.  Falling into old patterns of setting expectations of a person with Alzheimer’s disease can be frustrating for all.   Remember to meet them where they are.

34.  Remember Your Memory Chip ™  important rules when caring for someone. Focus on is the person you are caring for –Are they: SAFE, HAPPY, and PAINFREE.  It’s amazing how things that bothered you before just won’t anymore!

35.  Watch for signs that you or others are trying to FREEZE FRAME someone into being who you were comfortable with in the past.  Remember, all of our lives are  consistently changing.  We have no right to move forward in our own life and try to make another person stand still in time, just because we are not comfortable dealing with change.

36.  Realize there is a big difference between protecting someone’s dignity and protecting our own ego!

37.  HYBRID CAREGIVERS are a gift to both the patient and us.  CAR EGIVERS stands for  Conscience Awakening of Relationships, and Emotional Givers

38.  It is time to shift Caregiving from Crisis to Comfort!

39.  We can’t change the delivery of care until we understand from all perspectives how caregiving is perceived and received.

40.     There is a big difference between their dignity and our ego! (for the full story put dignity and ego in the search box)

Today was a Gift of Connection.  There is Reason to Celebrate!

50.    10 Things to Keep in Mind When Dealing with Someone with Dementia    Author unknown

• Never Argue – Always Agree
• Never reason – Always Divert
• Never Lecture – Always Assure
• Never Say “Remember” – Always Reminisce
• Never Say “I Told You So” – Always Repeat
• Never Say “Can’t” – Always “Do What You Can”
• Never Demand – Always Suggest or Model
• Never condescend – Always Encourage
• Never Force – Always Reinforce
• Never Take Over – Always Ask Permission and Invite Their Participation

Thank you to Alida Loinaz for emailing me to let me know who is the author of the above 10 tips!

The author of these 10 “Absolutes” is Jo Huey and they are the basic foundation of her book (@ 2001):

Ten Simple Solutions for Caregivers

“Communication tool the Ten Absolutes provides Ten Simple Solutions for Caregivers of persons with Alzheimer’s or a related dementia. Book contains an easy to understand overview of the disease process. Familiar vignettes are used as a model for caregivers to reevaluate everyday stressors and to provide the means to complete impossible tasks.”

For more information, see her website: http://alzheimersadvocate.com/history

Jo Huey and The Alzheimer’s Advocate are a valuable resource and have been for many years in the family caregiver community

By Lori La Bey

Please read the response I received from Michelle after she went to visit her non responsive Mother.  Keep in mind Michelle and her Mother had a great relationship over the years but never really showed affection to one another, like a physical hug or saying I love you.  Today is a day to celebrate old patterns being broken and new connections being made.  Michelle and I have been communicating for a few days now and if you would like to read all correspondence please scroll down to the right side where comments are posted and you can read from the beginning.

From Michelle today 10/31/09

I did it. I went to see mom…and my husband waited for me in the car. I just wanted time alone with mom. I went into her room where she was in bed and for the first time I caressed her face, felt how soft it was and told her that I loved her…can you believe it? I told her that I was happy enjoying my life, and that my sisters and brother were doing well. I told her to “let go” and that it was okay to so. I talked to her about her mother and that I look forward to seeing her when God will be making all “things new”, where persons who die will be made whole again and that I look forward to seeing her come back as my mother with her whole mind again. All of a sudden she started to mumble and move around. It was so deep to see her do that because otherwise she just lays there. When I repeatedly told her that I loved her she had movement. I really felt that I connected. I just wanted her to know that I was okay and that she could rest. Didn’t stay long, but the visit was a good one.

I also did something I never did before, I moistened a towel and wiped her lips and put some lotion on her face. just the sheer touching of her face was so deep and profound, it moved me to tears. never did that before. I am so glad that i had this experience and I thank you for sharing that video with me and also thank you for sharing your thoughts and encouraging words with me.

I will check in with you on Monday. Going to spend the day with my husband tomorrow and just relax. I finally feel good with myself.

Thanks again 🙂

This is the video I recommend Michelle watch:

I want you to go to this website and watch some short videos.  Be prepared to cry as it is so moving.  The woman in the video is Naomi Feil.  She grew up in Nursing homes and has a whole wonderful and amazing philosophy on communication with Alzheimer’s patients.  I’ve seen her in person.  She is INCREDIBLE!

Promise me you’ll try to watch this before your visit.  The second video down is the one I for sure want you to watch.  You will see from the video they are inside that shell.

http://www.memorybridge.org/videos.php

Here is my response to Michelle-

OH MY GOSH Michelle,

First I have to say I’m so sorry if my reply is late today. I have been thinking of you all day and checking my messages when I can, but I was in a conference all day.

I am so excited for you. I had tears streaming down my face and a huge smile to boot, as I read of your day with your Mother. What a FANTASTIC DAY! What a FANTASTIC MOMENT TO REMEMBER!

Your description of your Mother’s response, allowed me to feel all over again the connection I have with my Mother. For others, it will give hope and set another example of courage to connect. To try something new and different. Be those connections rare or not, they exist and are so powerful

Thank you again for sharing your story. You have been a true blessing to so many who read this blog. Your courage and honesty are appreciated by us all.

Now, I hope you go have a wonderful Halloween and celebrate your new passage of affection and connection with your Mother. All of this happening on a holiday may make this experience even more precious, as you will be remind of it ever year to come.

Know your story will empower many!

Thank you again
Lori

But I Promised, “NO NURSING HOME!”                   ByLori La Bey

This is a common statement by many.  Faye one of our readers is struggling with this same question.
I too made the promise of never putting my parents in a nursing home. In the end they both ended up in one. My Father’s move was medically necessary at the end stage of his cancer. He took a tumble down the steps in the senior building they were living at. My Mother, God bless her soul made the decision to move into the nursing home with my Father, knowing she had the early stages of Alzheimer’s disease. I’ll never forget that day.

It was about a week or two after Dad was admitted to the nursing home and Mom realized he would not be coming home. The plan then was for her to come live with me, with my family. But one morning she came to me very matter of a fact and she said,” Lori, I’ve made a decision. Dad and I have been together 49 1/2 years and I’m not going go to leave him now. I want to move into the nursing home.” After a long family discussion, Mom moved into the nursing home.

Little did I know what a gift this decision would be.

The care and social interaction she received from the nursing home over the years cannot be ignored.   Compared to what she would have actually received from me, there was no competition.   Not that I would not have taken good care of Mom.  I would have.

I know, it sounds like living with family would be the best possible solution right?  The truth is, most often it is not.  As a loving daughter even with great intentions, in the scheme of things, it often just doesn’t work.  The roles we play in life take away from the care we can truly give them. For me it was the roles of, Mother, Wife, Business Owner, Volunteer, Speaker, Caregiver, Daughter, Friend… and the list goes on.

I realized I could not give her what the nursing home had to offer, no matter how good my intentions were. I had to admit it.  Someone else could do a better job caring for her than me. That was a huge realization and one that hurt. OUCH!  Then add in, I now I had to deal with what others would think of me – That I had abandoned my Mother. It was one of the most difficult decisions of my life. So long story short, I do understand the frustrations of promising something before you have the facts and the situation that might cause you to consider a different option. Add to that most of our parents have a very negative imagine of a nursing home or assisted living community, and that is why they are so adamant about never having to go to one!

Here’s an example of service and care I never would have thought to try with my Mother at home.  I walked into the nursing home to visit my Mother and found her sitting in a half circle with a bunch of her friends.  In the middle was Bobbi one of the activities staff.  There Bobbi sat holding up a magazine with a beautiful picture full of color.  As she held the magazine she asked questions, pulling responses from each resident.  It was incredible.  They were all so engaged.  They were telling stories of what the picture reminded them of.  They were yelling out colors and actions of the characters in the picture. Some even started singing as the picture reminded them of a song!  Everyone had smiles on the face and beamed with confidence.

I thought to myself, I never would have thought to try to generate a conversation from a magazine photo.  Let alone, sit still long enough to try it.  Over time it was many small things that made me realize how staff, understand patient needs.  How they do things to engage them and build confidence.  How they offer peer interaction, which is something difficult for families to do.  It was those little things that brought a smile to their faces and a giggle or chuckle slip from their lips.  It was about belonging to a group of friends and not being judged.  It was a gift to the patients, and something I never would have thought of, because I was not an expert in that area.

I didn’t understand the importance of socialization.  How important that piece is to all of us, even those with Alzheimer’s disease.  It was about feeling accepted.  It was about feeling normal.  It is something I so clearly understand now.

For us caregivers, typically one of the hardest things to do is to go back on our word.  We don’t give ourselves permission to admit, how much things have changed since we made that statement, or under what circumstances in which the statement was made, or how the options for assistance have changed.  We must give ourselves permission to explore the big “new” picture before us, in order to make the best possible decision for our loved ones.

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 82^nd 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 16^th, 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 82^nd 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 82^nd 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 82^nd 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.

at   www.AlzheimersSpeaks.com