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Old 03-22-2007, 01:58 PM   #1
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Suggestions that were successful for my family...

Each time I visit here, the effects of this horrendous disease on families is so apparent. I thought I could suggest a few things that were VERY HELPFUL for my family in dealing with the diagnosis of Alzhiemers in our Mother, and then perhaps some of YOU would share suggestions that have proved helpful in this long journey.

There are some very important facts every family needs to know;

· This disease is not their fault. Our research showed there are two
recognized causes; familial (hereditary), or a severe bump to the head.
Compassion, patience, and a sense of humor will become the bond between the Alzheimer’s patient and those who love them.

· A person with Alzheimer’s does not loose their intelligence. This took me some time to understand. After a while, I realized that Mom absolutely understood everything that was said to her. She could process each sentence, but the correct words seemed to escape her reply. It was distressing to see some families have negative discussions in front of their loved ones…not realizing the harm they were causing. I learned to pick one or two words from her jumbled sentences and repeat them back so she would think I understood what she was trying to tell me. This brought her comfort.

· Perception is reality. It was surprising when Mom talked about the cow we used to have! We realized she was picking up other patients stories and interpreting them as her own. Whatever an Alzheimer’s patient believes to be true is true to them. Mom had never lied to us...and she was not aware the stories that were repeated over and over had never happened to her. Arguing, or trying to correct her memories was very upsetting to her. I remember sitting by her on the bed…nodding with a smile on the outside…while crying on the inside.

· Communication between family members and loved ones needs to be a priority. One brother set up a family web page that quickly became an excellent tool for many discussions. In the beginning, talks were carefully worded and somewhat timid...but as the disease progressed, so did the tenacity of our posts. All family members, including grandkids, were able to keep track of the progression of this disease. When the "Elian Gonzales" episode started in the news, we realized another page should be added for discussion that had nothing to do with Mom...when tempers flared, another page was added that needed a password.

· Accept the fact that responsibility will not be even. Two siblings had made the decision long ago to live far away...their direct participation in our Mother’s care was minimal. Weekly phone calls from my Sister helped me share the challenges and gave me a much needed shoulder. Each of us seemed to look at this disease in a different way...and that was all right.

Music became our connection early on. Familiar songs soon had forgotton words, but we still sang them in a "do-do-do" fashion! (I found I could sing a LOT more songs if I didn't have to remember the words anyway!) Often other clients join in even now as I sing to Mom.

A friend took his Alzhiemers Father's car keys and carefully filed them down so they would not start the car. Actually, all his Father needed was to see those keys in a familiar place and THINK he would be able to go when he wanted!



My sincere hope is that by sharing my journey thru this horrific disease, I can present a perspective that offers compassion, insight, and even a little humor....................Pam

Last edited by moderator2; 03-22-2007 at 04:19 PM.

 
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Old 03-22-2007, 06:35 PM   #2
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Re: Suggestions that were successful for my family...

Thak you; interesting and helpful

 
Old 03-31-2007, 11:49 AM   #3
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Re: Suggestions that were successful for my family...

I've thought of a few more things that worked well for my own Mother...

When she was moved to an Alzhiemer's facility, I made big lettered signs...in printed lower case letters, saying what each drawer held and taped them to the front of the drawer. (ex..."socks", "nighties", etc.) I drew a picture under each word so when she could no longer read what they said, the picture was a good reminder. (we always got a big laugh at my "Madonna-looking" undergarment!) Also, as I would put her clothes away for her, I gave her the socks to fold...she seemed to enjoy keeping her hands busy.


It seemed to upset her when the blouses were unbottoned, and I learned to keep them buttoned so she could simply put them on over her head. She could not remember how to do this.


Because singing was an important part of our family, I made a songbook of familiar songs...laminated the pages, and put them in a big binder. Some were just silly songs from long ago...some were hymns...but they were all HER songs...and that book was used often. Now, I've become the soloist, but I know she still loves to hear them.


We copied off several large pictures of all of us and our families, laminated them and taped them to the wall by her bed. Early on, it was clear how much these smiling faces gave her comfort...after a while, she had no idea who anyone was...except for HERSELF in the pictures! (Interesting!)


Once in a while I take her something I've made/baked using one of her own recipes. Her famous banana cake with the broiled topping seems to make the best impression on those taste buds...she DOES remember that taste! Now she needs a reminder to swallow, but her expression at a familiar taste makes me feel as good as she does!


Hmmmm.....I'll keep thinking, surely there's more helpful things to share....Pam

 
Old 04-04-2007, 09:52 AM   #4
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Re: Suggestions that were successful for my family...

Thanks so much for your comments. A few years ago, I started writing a book with the intention of helping families and loved ones of those diagnosed with Alzheimer's. My hope was that by sharing details of our journey, others would be able to more compassionately accept the transformation of their loved one, and be aware of the changes that are set before them daily. None of us are "alone" in this disease, and perhaps sharing hints that seem mundane would be helpful to others...that is my hope.

The first post here is in the beginning of my writings...specific things we've learned along the way. The title of my book actually came from a long-distance phone call made early-on from my Sister during a snowy day conversation. She asked how the weather was...Mom's answer was..."It's raining outside, but it looks like ice cream!"

This little phrase...where Mom couldn't think of that little four-letter word..."snow"...seemed to sum up the first indications of this horrendous disease...and it was perfect for the title!

There is still so much for all of us to learn and accept, but the main focus of my book is the importance of remembering the life of that little person...who they had worked a lifetime to be...before the onset of Alzheimer's. I think of my favorite teacher...who had the ability to find artistic talent in every kid...(how DID she do that?!?) I was fortunate to have her granddaughter in my class...but because of this disease affecting her grandmother, she had never seen anything except the slow progress of Alzhieimer's steal away her grandma's life...and part of HER family's, as they were her caretaker. I became determined to introduce her to who the wonderful person she had never known. I soon realized how important it was to remember the "previous life" of each person...and I try hard to keep it in mind even now at each visit with Mom. The little person I see every week is surely NOT the woman who gave me life...but she is still my Mother..............p

Last edited by moderator2; 04-04-2007 at 10:09 AM.

 
Old 04-04-2007, 05:32 PM   #5
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Re: Suggestions that were successful for my family...

Thank you so much for your posts, Pam.

I no longer live with my dad but your suggestions are something I had to learn the hard way. It is much easier to agree and be happy than correct and make everyone miserable. I also learned to be mindful of my tone of voice and body language. As my dad progressed in this disease, he seemed to get better at picking up on my moods just by studying my facial expressions and tone of voice. In some ways, I think he understood me better than before.

It took some time for me to realize that although I wasn't telling him how I felt, I was SHOWING him and he was reacting to it. If I was unhappy in the least bit, dad became fidgity and restless. If I was a little angry, dad would "hide out" in his bedroom. If I was in a hurry, dad got nervous and then angry. If I was happy, dad would engage in as much conversation as he could, even joking around some. If I slowed down my pace and relaxed, dad would respond by doing more things with me. I wonder if the non verbal communication skills in AD patients is actually strengthened as they lose their words, at least for a while. I remember my grandpa (when he was in the last stages especially) would stare at us in heavy concentration trying to figure out what was going on or who we were.

It took me a long time to realize that words play a very small part in our communication. But I continue to be amazed at how well my dad picks up on tone of voice and body language.

Love, Barb
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Live, Love, Laugh.

Last edited by LuvMyLilDoggie; 04-04-2007 at 05:33 PM.

 
Old 04-05-2007, 09:38 AM   #6
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Re: Suggestions that were successful for my family...

thank you very much for this post.
liz

 
Old 05-27-2007, 07:52 AM   #7
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Re: Suggestions that were successful for my family...

I've been thinking about another strange part of this disease that is difficult for families and loved ones to accept. It is not just the obvious personality/temperament changes...or lack of hygiene...or even loss of communication skills that catch me offguard. Unexplained or strange ACTIONS have made me understand how differently that diseased mind perceives what all of us think of as common actions.

I remember giving Mom a peeled banana one afternoon. She looked at it laying on the table...gave me a side glance...then picked it up horizontally and chewed it back and forth like an ear of corn! She recognized the SHAPE, but wasn't sure exactly the WAY to eat it!

When she was still able to pick up a glass of juice...I'd see her try to get the liquid by licking the bottom of the glass...she wasn't sure how to get it into her mouth.

One of the saddest things I've seen was an old woman from a downtown "group home". It was raining...the 4-legged cane she usually limps along on was held up on her shoulder like an umbrella. The SHAPE of her cane handle reminded her of "something" that she should be holding above her head in the rain. I'm surprised at the lack of supervision.

I mentioned before "Perception is Reality"...I have to remind myself each time I visit the nursing home.

Blessings to you all for the love and attention you all give your loved ones....Pam

 
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