Your Memory Chip™ – EXERCISE

Your Memory Chip™ – EXERCISE          by Lori La Bey

No matter when, where or how you hear someone important to you has been diagnosed with Alzheimer’s disease, do yourself and them a favor.  Go some place quiet where you can be alone with your thoughts.  Bring some index cards or some paper with you, or go to the tools and products section at Http://www.AlzheimersSpeaks.com  to get a form emailed to you.  Don’t forget a pen.

Now as you sit quietly, think of the most important thing you want the person with Alzheimer’s to remember when they think of you.   Remember, just one thing.  Keep it simple.  Don’t rattle on.  Short, sweet, and to the point is best for this exercise.  Now write it down in your very best handwriting.  Read it to yourself and then read it out loud.  How does it feel?  Is this what you want them to know?  If not try again.  You will know when it is correct.  For me it was simple.  “The most important thing I want MOM to know  is – I LOVE HER.” 

Next, I want you to think hard and fill in the next question.  “Things I need to focus on are______,_______,_______.

What I found to be my most important things on this statement were my “to do list” items. After losing my Dad I realized these were not important at all.  It was at this time, I found myself wishing I had more quality time with him, just doing things.  Just being with him.  Yes, I still needed to do laundry, go grocery shopping, and medications… but I also found I was not engaged with him because I was “doing things.” 

I let myself get frustrated when things weren’t the way I thought they should be.  So I have learned with my Mother to make sure my focus is on what matters.  The true, basic, simple things, which make life wonderful.  For me I focus on three things.  No more.  No less.  They are is Mom, “SAFE, HAPPY, AND PAIN FREE.”

The last section is for you to list things you want to remember about the person.  What are some of the best memories you have of, or with them? Write them down.  These memories will make you smile and help reduce your fear of losing the person you knew before Alzheimer’s took hold of them.  Don’t forget to add a favorite photo!

Once you have completed all three questions, I want you to promise yourself and them one thing.  I want you to read out loud the following, “I promise to look at my Memory Chip™ and read it to myself before every contact be it in person, on the phone, by email, or video…”   

You might ask why this is so important.  There are a couple of reasons, but first, you must decide if you are going to share your statement with the person who has Alzheimer’s. 

Some people are not comfortable stating their feelings to one another and that is fine, but I want you to know the possible advantage of doing so.  Keep in mind you can share your statements on Your Memory Chip™ with a person in any stage of the Alzheimer’s.  If you are lucky to have the disease diagnosed early, it can be an added benefit.  You can use this statement as a tool to help trigger their memory as later stages take hold.  It will also help you stay focused on what is truly important.  You won’t be likely to get distracted when things are not perfect or as you thought they should be.

I am not saying this is a miracle card or tool.  I am not saying they will remember your name and engage you in conversation throughout the disease. 

What I am saying, is schedules, consistencies, and patterns can be one of your most valuable tools as the disease progresses. 

If for example, your statement is like mine, “Mom I love you, and you want you to be safe, happy, and pain-free” and if you choose to share your statement with them, in the same manner, tone, and timing of each visit or conversation; you are now setting a pattern.  If you add eye contact and touch at the same time you’ve embedded your pattern into more of their senses.  If you wear the same cologne, you have added another sensory trigger.  Patterns and sensory recall are great tools; don’t forget they are your friend.

On the other hand, if you choose not to tell them what is most important to you, that is fine too.  You can still do things to create a trigger pattern, by engaging the senses through touch, aroma, sight…  May you read their favorite author, put on their favorite music, wear their favorite perfume or cologne, or dab them with their favorite fragrance.  The options are endless but powerful.

Tis the Season for Fun, Dysfunction, and Caregiving Revelations.

Preparing for the Holidays                 by Lori La Bey

The holiday season is upon us and it “Tis the Season for Fun, Dysfunction, and Caregiving Revelations.”

The holidays breeds stress.  In order to limit the damage we must have a realistic plan… 

1)  Be open mined,

2)  Love unconditionally, and

3)  Let go of control! 

When we are able to do these three things, life is much calmer.  We find ourselves laughing and appreciating those around us for who they are.  Not who we wish they were in our perfect little worlds.  Remember, others have the same thoughts as we do.  We probably are not living up to their standards either. 

Well, doesn’t that thought put a twist on things! 

The nerve of them.  The nerve of us.  Judging others not something we think about often, but we do frequently.

As a friend of mine Mark LeBlanc says, “DONE IS BETTER THEN PERFECT!”  Keep in mind the holiday season is short, even though some days it seems like it will never end.  The expectations we have of others needs to melt away.  We should focus on ourselves, and those we care for.

Life is about living, and being true to ourselves.  It is not about measuring up to others perceived ideas of who we should be, or how we should do things.  When we are respectful of others and ourselves, we can find balance.

This is critical to keep in mind when dealing with those you care for.  It’s not about them coming to meet us where we have drawn the line in the sand for standards. 

It is about us coming to meet them where they are able to be.  Where they are the most independent and live with the utmost dignity. 

Let go of your standards and memories of what was. 

Be thankful for what is before you. 

Look for the miracles we miss everyday.  Slow down and you will see them.  Enjoy the essence of the people in your life and what they have to offer you, and you them. 

Illness does not give us the right to tip the tables and feel we are the only ones giving.  The people we care for give us much, and many times we take them for granted.  

Start a new tradition like I am this holiday season.  Get a journal and ask the important people in your life to note what they are thankful for.  You may be surprised at how much we all have, even though the media tends to play up what we have lost in these economic times.   

Begin your journal of gratitude.  Your journal of life.  Your journal of love.  Keep the memories.  Document what is important to you and others. 

What a wonderful read if you are feeling down or disconnected with others.  What a great way to infuse the simple things life has to offer each of us.  What a fantastic way to realize life truly is about simple pleasure that don’t have to cost a nickel.

Hoping you all have a fantastic Holdiay Season!

STAGES OF SENIOR CARE

Here is a great book “Stages of Senior Care – Your Step-byStep Guide to Making the Best Decisions”  by Paul and Lori Hogan the Founders of Home Instead Senior Care.     Check out the link for more information

http://www.stagesofseniorcare.com/

Alzheimer’s Association Caregiver Notebook

Here is another great resource from the Alzheimer’s Association, a Caregiver Notebook

Topics covered include:
• Taking good care of yourself
• Understanding an Alzheimer diagnosis
• The basics of Alzheimer’s disease
• Legal and financial planning
• Caring for a person with Alzheimer’s

Order today notebooks are limited

http://www.four51.com/UI/Customer.aspx?p=productview&productID=mWWX18sooYKe-skV0cGtazaAgypspzETvY6aSVOOFBRxQXGaEBeKlnA-e-e&ProductInteropID=01-07036615-218-96-0003&CEI=dd5c8a81-5b5d-4027-892b-eb01336376bb

Owatonna Today Show Interviews Lori La Bey of Alzheimer’s Speaks

The Owatonna Today Show Interviews Lori La Bey of Alzheimer’s Speaks

If you are interested in checking it out the interview go to the following link:

http://www.blip.tv/file/2815847

Lori is the 2nd interview.  To hear more about Alzheimer’s Speaks you can go mid way into the show to see the interivew.

Hospice, Crying, and Sleeping

Hospice, Crying ,and Sleeping                By Lori La Bey

Here are some comments and questions about hospice and dealing with someone who can’t communicate any more, that came from one of our readers Michelle.  I thought many of you may be wondering about the same things so decided to make our conversation a post.

Good morning Lori…Hope all is well with you.

Spoke with my mom’s hospice nurse yesterday and just mentioned how my mom cries. She explained to me that sometimes this may be her way of acknowledging you. Do you find that to be true? I thought perhaps that she may be in pain, but she told me they have a way of noticing if that is so. She will be assessed next month to see if she will continue with the hospice care. She said if she continues to have weight loss and not eating well…that she will be able to have the hospice care. As weird as this sounds, I hope she will continue to be eligible for their care.

The nurse also mentioned that her sleeping is normal. She seems to always be asleep whenever I call the nursing facility. I thought they were giving her meds to make her sleep, but she said that is not the case. She said that in the final stages sleeping a lot is normal. Do you find that to be the case?

I plan on visiting with my mom this weekend. Just to connect again and touch. Can’t wait

Take care Lori and have a wonderful day

 Hi Michelle,

 It’s good to hear from you.  Sorry your Hubby is sick.  Hopefully he is not a whiner.  LOL No really, I hope he doesn’t have H1N1, but if he usually doesn’t stay home you know he is feeling pretty bad.  Maybe some good chicken noodle soup will perk him up and he’ll be up and running soon.

 You asked a couple of question.

 Let me address the first question on crying.  Here I have to agree with Hospice.  I have found their cries are different for pain, then when acknowledging someone around them.  As I say that I’m trying to figure out how I know that.  I guess I look at their eyes, mouth, facial expressions, and body movement in general to tell me.  Do their eyes look soft and calm or fearful or painful?   Does their mouth look peaceful, smiling, or is it unaffected vs. twisted and tight.    If they start to twist their face, or body; or twitch I find this is usually a pain situation. 

Bottom-line, if I’m still not sure I pray for guidance and something usually comes to me.  It makes me feel calm and knowing.  It maybe a voice I hear whisper in my mind, or just a gut feeling that settles with me to guide me in how to handle their reaction.

As for your second question on sleeping, I too agree with hospice.  I have found sleeping in very typical.  I find I look for signs of frustration to tell me if things are not in sync.  I look for those facial signs, the eyes, mouth, the body movements and sounds.   I find with my Mother she is perfectly content being in bed.  In the earlier stages would be upset and not ready to go to bed.  She was uncomfortable.  This is not the case anymore.  As long as she is content, peaceful, and happy; I’m ok with it.

 I think part of how I got to this point is I now accept who she is today.  I no longer feel the need to have my “Old Mom.”  I’ve let that image go in a sense.  I remember what she was like, but have accepted that imagine as part of the past.  I try to enjoy her as she is now, even if that means she is tired or non-responsive, compared to how she used to be.   I have learned to look at the subtle signs she gives me.  I have learned to connect with her on a deeper level.  One I did not know existed prior to her disease.

 You also talked of hoping your Mom remains on hospice.  I totally understand.  My Mom was on hospice and then was taken off because she gained weight and didn’t qualify any more.  Mom had been losing weights for about the last year up until hospice started.  It was a double edge sword.  Even though you hate to have someone on hospice because you know it’s toward the end of their life, you still want them to have as many services to keep them comfortable and to assist in providing a wonderful quality of life.  It’s a mixed bag.  For our family we will most likely have to go through the process of signing Mom up at another time for hospice.

 I hope these answers help you when you are connecting with your Mother.  Have a great visit with your Mom.  Let me know how it goes.

 Lori

What Do You Miss The Most?

What Do You Miss The Most?                       By Lori La Bey

I attended an Alzheimer’s Support Group tonight.  This is something I have not done for a long time.  In fact, it’s been many years.  I went with the intention to go hear a speaker I’ve heard great things about.  It is interesting though how things work out.  The speaker was ill and it was going to be a “normal” Alzheimer’s Support Group meeting.  One where people introduce themselves, and why they are there… One where questions are posed and people comment if they are comfortable on how they are dealing with their feelings, their thoughts, their sanity… their life.  Openly talking about the good, the bad, the ugly, and the comical; in a confidential manner.  One where you feel safe knowing the group is full of respect for one another.  

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.

Rain Shower Heads and Alzheimer’s disease

Rain Shower Heads and Alzheimer’s disease              By Lori L aBey

Speak Up – Make a Difference

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.

National Alzheimer’s Disease Awareness Month

Check out the link for great information and what you can do to help!

http://www.alz.org/news_and_events_nadam.asp

You Might be a Caregiver if…

I love this from one of our readers – Nancy Dunn Thompson   Thanks Nancy!

Jeff Foxworthy has nothing on Virginia Valenzuela who shared what’s might identify you as a caregiver. Add to this list. On our wall. You might be a caregiver if–

1. Your new hobby is canceling credit cards, writing letters to collection agencies and canceling numerous magazine subscriptions.

2. You spend 1/3 of vacation time backtracking as you look for eyeglasses, purse, hat, gloves and sweaters.

3. You place most of the bills in a folder labeled, “I will think about this tomorrow.”

4. Going out to eat is a Big Mac or a Whooper.

5. An outing consists of going to get the mail.

6. You lobby your Congressional Rep. to have more hours added to the clock.

7. Taking care of yourself means…?

8. Coffee, cola, and aspirin are food groups.

9. You never sort your loved ones socks because they seem to like to wear them mismatched.

10. Your lawn has been declared a wildlife refuge.