Coach Broyles' Playbook

Diane mentioned Mom’s difficulty with language in her last article. Communication is getting more difficult for her every time we are with her. Yes, she has alert times when she remembers quite a bit. However, the actual calling up of the right word she needs is difficult as well as frustrating for her.

Recently a friend handed me a book to read entitled Coach Broyles’ Playbook for Alzheimer’s Caregivers. It is a “practical tips guide” written by the University of Arkansas Athletic Director Frank Broyles whose wife suffered from Alzheimer’s Disease.

In discussing how communication changes in the Middle Stage of the disease, he offers several tips for the caregiver. He states,

You may have seen that she does not talk like she used to. She is having more trouble finding words. Her sentences are short and choppy. The loudness of her voice may have changed. Her words may not make any sense. This is called “word salad.” As you listen, you know she is trying hard to tell you what she wants. The words just come out wrong.

Communication Tips

• Be patient and calm
• Touch (holding hands) is very important.
• Don’t use baby talk.
• Stop what you are doing. Really listen to what she is trying to say.
• Think about the feelings behind the words she is trying to say.
• Look at what her body is trying to tell you.
• If she looks upset or angry, then ask her if she is.
• Treat her with dignity and respect.
• Say exactly what you want her to do.
• Use ordinary words. Instead of saying “Hop in the bed,” say “Please get in the bed.”
• Turn your questions into answers for her. Instead of “Do you need to go to the bathroom?” say, “The bathroom is right over there. I can walk with you.”

A Few More Suggestions:

• Don’t argue with her. It is easier to agree with her and then do what you had planned anyway.
• Don’t try to reason with her. You will just get angry and she won’t know why. Change what you are talking about to something she likes.
• Don’t correct or fuss at her for getting something wrong. Does it really matter? It will only make her feel bad.
• Don’t say “I just told you that.” Just repeat the answer you have already given to her.
• Don’t ask her to “remember” things that happened in the past. Talk about what you remember happening and how she was a part of it.

You may find as time passes that she will not be able to start a talk with you. She may not ask many questions either. She may sit or walk around the room and say nothing unless you begin talking to her first.

Thank you, Coach Broyles, for sharing wisdom gained from your experience.


For Playbook copies and Alzheimer’s disease information:
www.alz.org
24-hour helpline—800-272-3900 (toll-free)
Playbook on the Web: www.alzheimersplaybook.com

Nan's Turn to Share

How different we all are! Yet we all dearly love the mother who gave us life and has helped us each through tears and years of all kinds of living experiences. Nancy expresses herself today, thoughts and feelings common to us all, but written in her own unique way:

Today I miss Mom! I am here with her, and I don’t want to leave. I keep thinking I can make her smile, even get half a smile. Maybe I’ll see a smile in her eyes. I have her repeat her five daughters’ names according to birth order. With a little help and coaxing, she does it! And I say, “Good job, Mom!”

Later…I wonder if calling our names is like a test to her, or is it a good mental exercise? I hope it's the latter. I want her to speak to me, to interact, to laugh out loud, but I would certainly settle for a smile. I want to do something that she wants to do. But she doesn’t know what that is. I try to guess, but Joyce (one of her caretakers) reminds me that she doesn’t know what she wants to do. So we settle for helping her move from the kitchen table to the recliner. There I can take her shoes off and rub her feet. That must feel good!

If I could curl up in her lap, I would. I need to be close to her. Does she need to be close to me? I wonder. I think she does because when I get near her, she always puckers up and I get to kiss that precious face. And she kisses me back. I thank God. That is my blessing today. I can go home now.

A Happy Visit

My September update is a few days late, but here I am to report on a wonderful time with Mom. She and I had one of the best visits we’ve had in a long time Friday evening (10/2).

When I first arrived, I almost didn’t recognize her, but she knew me. The reason I had to do a double-take was because she looked so different. The beautician had not been there to wash and set her hair. I can’t remember when I have seen Mom without her hair fixed. But there she sat—with her hair brushed flat and straight. Her smile of recognition when she saw me calmed me down immensely. I was so happy to see her and happy that she was pleased with me being there that I forgot about the hair.

No, in the past Mom would not have been seen in that condition, but now is now. Things that matter now are: being recognized, seeing her roll her eyes at what one of the women says, and having her ask, “How’d you find me here?” And always that sweet smile when she responds to one of us with, “I love you, too.”

As we walked to her bedroom to have some relief from the volume of the ever-present television set, she seemed genuinely glad to see me. She appeared to have more strength in her legs than the week before. Perhaps she’s better because of something the doctor prescribed for her edema. (For a couple of weeks her feet and hands were very swollen.) We spent some time going through a photo album Pop had brought to her. Many of the people neither of us knew. Yet every time there was a member of her family, she would stop and look closely at the picture. She was calling the names of almost all the children, the grands, and the in-laws. I was amazed, and my heart was warmed by her alertness.

The whole time I was there, I could hardly keep my hands off her. I just wanted to hug and pat and tell her I loved her over and over. When we think about how well and how long she has cared for all of us, I suppose our purpose now is obvious—to love and care for her as much as we can for as long as we can. We love you, Mom. You’re the best!

For those of you who have been so kind to ask about Mom, I apologize for taking a while to get back. This summer of ’09 has been one for the records for several reasons. In order to stick to the blog’s purpose, I will sum things up by saying this. Mom was in rehab for about six weeks. Then we moved her to a lovely home in McKinney where she will continue to live for as long as possible. Now Diane will continue the narrative:

After Mom fell, it was clear she could not go back home. Pop used the time Mom spent in the rehab facility to locate a place for her to live. It is a hard decision to make. You have to consider so many things, such as leaving your loved one in the hands of total strangers, knowing that she can no longer tell you what happens when you are not there. The legal matters are complicated, and the financial burden is costly. There are many publications and websites full of information, but we received the best leads from the hospital social worker, along with doctor recommendations.

Mom has now been in her new home for a couple of months. We could not be more pleased with Pop’s decision to put her in a “resident facility.” She is now receiving her medications on schedule, regular bathing, and home-cooked meals. She can roam around the house as if it were her own and visit with the other residents. She has her own room overlooking a large back yard, and she can watch the birds gather around the bird feeder just outside her window.

There are now no more days filled with worry about Mom falling. We don’t wonder if she will go outside and wander down the street. The time now is spent trying to communicate. Mom’s speech is no longer what it was. She struggles with each thought, trying to get the correct word out. Most of the time the words she uses don’t make much sense, but at least she is still trying. We are hoping for approval for Mom to get the new “patch,” thinking that maybe it will help with her clarity. “Exelon” is the newest drug for Alzheimer’s/Dementia/Parkinson’s Disease.

I recently read a very helpful book entitled The Validation Breakthrough, by Naomi Feil. In it the author teaches simple techniques for communicating with people with Alzheimer’s-type dementia. I highly recommend this book to help people maintain a measure of communication with loved ones who are prone to withdrawing due to this awful disease, and possibly prevent progression toward a vegetative state during their later years.

The Rehab Center

The way I understand it, Mom will be in the rehab center for several weeks. The bone she fractured has to be treated in the same way an injured rib is cared for: with a great deal of patience and TLC, to allow it to heal properly on its own.

Mom doesn’t appear to be in any pain, except when she sits up. She requires help to get into a wheelchair. Then, once she settles into the chair, she seems comfortable again. She travels to the dining room in the wheelchair, and her appetite is good. She has never been an extremely picky eater, which is probably fortunate for her, since she is in for a bland institutional regimen now.

Today is Mom’s third day at the center; she entered Friday evening. Each day she has eaten her meals at regular times; she has taken her medications at correctly spaced intervals; and she is clean and wearing fresh clothes. She seems to be confused by the move, in that she doesn’t know where she is. Yet she is not acting out in the least. For so long, she has “wanted to go home” each evening, but now she says she is at home. Yesterday afternoon she told me that she and Pop had gone to lunch and then come back home. (Lunch was in the dining room, and we were in her room visiting.)

We don’t really know what to expect from day to day. She may wake up one morning soon and decide she doesn’t want to be in this place any more. But for now, she is comfortable, as much as possible with the fractured bone. And the Lord has used this fall that caused her pain to ensure that her needs are met.

Pop, on the other hand, is probably not doing so well. I use the word “probably” because no one really knows how he feels most of the time. He is not an expressive person. Opinionated,yes, but not one to talk about feelings. So we assume he is lonely without Mom at home with him. He has no one to talk to, no one to eat with, and so on. He is spending several hours a day at the rehab center, watching television with Mom. He has even mentioned taking a more comfortable chair from home out to her room.

It is heart-rending to imagine being separated from your best friend of 20 years and being unable to help the situation. He has tried to hang on, to keep Mom at home, to take care of her himself, to make the best of things. But now his best-laid plans are not working. He can take comfort in the fact that she is well cared for, but now he must take care of himself. And we must continue to pray for the Lord’s protection over him.

Romans 8:28

And we know that all things work together for good to them that love God, to them who are the called according to his purpose.

On April 5, I wrote of frustration. Today I write with a grateful heart of Romans 8:28. Feeling so helpless, I have continued to pray for the Lord’s protection over Mom and Pop. Not knowing what to ask Him for, I ask Him to keep them safe, wherever they are. I gave up a while back that Pop was ever going to make any moves on his own. He does not seem able to make a decision to move Mom from their home. He and I had a little “showdown” one afternoon when I confronted him about leaving her by herself while he went to church. It was then that I saw the light—he was not going to take any of our suggestions. Period. Whether he didn’t want to, or he was not able, I don’t know. Since then I have continued to pray for them.

One evening recently, Mom fell and fractured her pubic bone. The next morning she was unable to get out of bed. By noon, Pop was calling Diane to leave work to help him. That evening, about midnight, Mom was finally resting in a hospital bed after much aggravated waiting in the E.R. and many x-rays.

Two days later we moved Mom to a rehab center where she has been resting well. To be continued....

HBO's "The Alzheimer's Project"

These programs sound very worthwhile. I copied and pasted rather than try to summarize:

Beginning Sunday, May 10, tune into HBO's "THE ALZHEIMER'S PROJECT," a groundbreaking documentary series that will change the way America thinks about Alzheimer's disease. This four-part film, airing over three nights exclusively on HBO, gives the public a rare inside look at the faces behind the disease and the forces leading us to find a cure.

Many of the researchers and families featured in the series are part of the Alzheimer's Association community. We applaud their willingness to share detailed information and personal stories in order to further the fight against Alzheimer's disease.

Mark your calendar to watch "THE ALZHEIMER'S PROJECT"

Sunday, May 10
9 p.m. EST"The Memory Loss Tapes"

Monday, May 11
7:30 p.m. EST"Grandpa, Do You Know Who I Am?
With Maria Shriver"

"Momentum in Science, Part 1"

Tuesday, May 12
7 p.m. EST"Caregivers"

"Momentum in Science, Part 2"

"THE ALZHEIMER'S PROJECT" is a presentation of HBO Documentary Films and the National Institute on Aging at the National Institutes of Health in association with the Alzheimer's Association, The Fidelity® Charitable Gift Fund and Geoffrey Beene Gives Back® Alzheimer's Initiative.

All films will stream free of charge on www.hbo.com/alzheimers and will be offered for free on multiple platforms by participating television service providers.