From The Archives
Although The Ribbon constantly strives to bring you the latest information about caregiving, we also feel that some things bear repeating. We have been on line for over 4 years. Some of us have been there from the beginning. But some of us are new to the site. And that is because the diagnosis is new. As are the fears and the questions.
Knowing that, we will add to the newsletter a "rerun" if you will, of a previously printed article. We hope these will be of interest to all. Our first choice from the Archives is the "7 Stages of Alzheimer's." It is to be used purely as a guide. Every patient is different. It is important to be aware of the progression of the illness. Having information helps the caregiver to plan and to prepare. While it is not "easy reading," it is factual and being prepared helps you to be a better caregiver, both to the patient and to yourself.
Look for other "reruns" in issues to come and if you have any past favorites you would like others to see, please send your e-mails to Karen@theribbon.com.
of Alzheimer's Disease: 7 Stage Model
Stage 1: No Cognitive Decline
No subjective complaints of memory loss. No memory deficit evident on clinical interview.
Stage 2: Very Mild Cognitive Decline (Forgetfulness)
Subjective complaints of memory deficit, most frequently in the following areas:
Stage 3: Mild Cognitive Decline (Early Confusional)
Earliest clear-cut deficits.
Stage 4: Moderate Cognitive Decline (Late Confusional)
Clear-cut deficit on careful clinical interview. Deficit manifest in the following areas:
Stage 5: Moderately Severe Cognitive Decline (Early Dementia)
Patient can no longer survive without some assistance.
Stage 6: Severe Cognitive Decline (Middle Dementia)
May occasionally forget the name of the spouse upon whom they are entirely dependent for survival.
Stage 7: Very Severe Cognitive Decline (Late Dementia)
All verbal abilities are lost. Frequently there is no speech at all - only grunting.
Editor's note: Remember the person you care for may be in more than one stage at a time and may fluctuate back and forth a bit. This is just a general guideline to aid you in knowing what may come next.
I was lucky enough to see a notice in our local newspaper about a teleconference being held by the Middle Tennessee Alzheimer's Association. I've never participated in something like that so decided to give it a try by calling the 1-800 number. It was very interesting and I learned some new things and relearned things I had heard before. I will give you a synopsis of some of the things that were covered.
68% of all caregivers will die before the patient they care for dies. This came as quite a shock to me. I never knew the percentage was that high. That means that 7 out of 10 of us will preceed our patient in death. What an eyeopener!!!
As you all know, the caregiver must take care of themself. This means recognizing when you are stressed to the max, when you are getting depressed, or when you are getting ill. You must see your own physician regularly! Remember, if you die, who will take care of your loved one?
Attend a Support Group....whether it's online or in person....it's important to talk to others who are going through the same things.
Accept help when offered.....get a fishbowl...drop slips of paper with jobs you need done into the fishbowl. When someone says "What can I do to help?", tell them to dip into the fishbowl. Tell them "Anything you pick, I would love for you to do". Then let them do it.
Check into using Respite Care for a few hours or a few days.
A noisy situation can cause a different behavior. What they see on TV can cause them to feel the emotions that are being represented. Look around and listen to see if you can figure out what happened to bring on a behavioral problem.
I heard a new term....Theraputic lying. We've always called them fiblets. I now like the term...Theraputic fiblets. (smiling)
When someone refuses to bathe check out these things:
Enviroment----Is there good lighting? Is it an organized room or is it too busy? Are there safety bars and seats for security? Is it comfortable? Would soothing music help?
Physical--- Is the room too cold? Is the water too hot? Is the person in pain? Is the person hungry?
Emotional---Are they embarassed? Give them a small towel to cover with. Do they have the fear of water? Run the water and then call them in for the bath
What I'm Doing----Am I rushing her? Am I being gentle enough? Am I talking in soothing tone of voice?
I hope some of these will help you as you go about giving care. If you are interested in participating in the next teleconference, it will be on May 28th from 10:30 to 11:30 am CST. The number is 1-800-789-6311. This is for Middle Tennessee and Northern Alabama only. Maybe your chapter of the Alzheimer's Association could start something like this in your area!!
Thank you to Tom Starling, Director of the Middle Tennessee Alzheimer's Association and to Marsh Wahl from the Tullahoma chapter.
Check out www.alz.org
Jean's message (in the Jan. 24 Issue) about Valentine's Day celebrations only confusing her mom reminded me of the comments I received because I didn't bring Mother to my home from the nursing home for holidays. Once Mother went to Golden Home to live, I never took her out again.
Some people seemed horrified. "You don't plan to bring her to your home for Christmas, Mary?" They couldn't understand why we preferred to visit her at Golden Home.
But Mother had reached the stage of Alzheimer's where she needed the routine, the familiar surroundings, the comfort of the staff. Before I placed her there full time and used a nursing home for day care, she was very confused and rebellious. This, I realized, was because she didn't understand why she had to be shuttled around from place to place.
Our family visited her on holidays, as well as throughout the year. I recall that first Thanksgiving, when Jim and I had a delicious turkey dinner with her in the attractively decorated dining room at Golden Home.
We chatted, looked around at the other families, remarked about the tasty food. Then Mother thanked us for taking her out to a restaurant for dinner. Going to a restaurant had always been a special treat for her throughout her life.
Other times we took our grandchildren (her great grandchildren) to Golden Home for parties, Mother's Day buffet, New Year's celebrations, Christmas with Santa. The children have these memories. And if Mother didn't realized what she was celebrating, she seemed to enjoy the occasion and the company.
During the last year of her life, we celebrated in her room. We enjoyed her 91st birthday party there with ice cream and cup cakes. By this time, she might or might not be aware of what was going on, but we created memories and photos for the great grandchildren.
We learned to develop new traditions which made allowances for Mother's Alzheimer's. We enjoyed them because they seemed to bring her joy. However, if we'd tried to force the old celebrations on her, we would have created more confusion for her and an upsetting time for us, leaving us with unhappy memories instead of a sense of peace.
(c)2002 Mary Emma Allen
Synopsis of Book:
From the creator of the award-winning Web site, A Year to Remember with My Mother and Alzheimer's Disease, this book brings together Brenda Parris Sibley's poetry, her caregiving journal, and cherished photographs from family albums through the years. Waiting for the Morning, the title which comes from one of her poems, is a memorial to Jessie Lee Parris, a victim of Alzheimer's, and provides helpful information for coping with caregiving, including a bibliography of suggested books for both adults and children, and a webliography of recommended Web sites by organizations, professionals, caregivers, and early-onset Alzheimer's patients.
Plasma homocysteine as a risk factor for dementia and
Hi you all,
The Ribbon Readers,
The SECOND, appears to be a costly item...yet for caregiving families who are truly not living at the poverty line consider two items--at what price do you (caregivers) value your own health? It appears $1,700 to $3,500 is a low price to pay to save your own health. It is less than the cost of one month of my father's nursing home care. Nursing home care runs about $50,000 on average these days (varies widely across the country). Consider these tools to aid in your caregiving and remember something I read in a newsletter (sadly, I don't recall who wrote it) if you don't spend/enjoy your hard-earned savings, your heirs will.
I am told that with it a 95 pound woman can lift her 200 pound husband without strain. It is hydraulic and battery operated. I have heard that some sell for about $1700, but the one I bought cost about $3500. (I think it is tax deductible both at purchase and again if eventually you donate it.) They are ordered from hospital supply companies (yellow pages). (From: Bubbierg )
The THIRD item was hard for my husband and I to accept. Each year, we wanted to celebrate my father's birthday--it was my birthday too--we shared a birthday. We also wanted to celebrate Christmas. During these times we could get him bunches of gifts...new clothes, etc. Yet, he had no idea why we were making the fuss. As the years passed, he'd fall asleep while we were celebrating! We wondered why we went though all the trouble. We'd justify it as what we needed to do to make him happy. Perhaps it took longer for us to learn than others, but we realized that we were doing this for ourselves more than for him. At this point we stopped. It was hard to see a Holiday go by and not buy him a card (he could no longer read nor did he even show interest in removing the card from the envelop).
It's a hard concept to grasp, but I think in the long run, recognizing how confusing it is to her to "celebrate" a holiday can be more stressful for our loved one than not doing anything! It is hard to break traditions -- Jean (firstname.lastname@example.org)
(Editor's Note: You will receive a discount on two of Brenda's
Alzheimer's books by clicking on the link below...
Dear One (s)
Editor's note: This is Alzjane's husband, daughter, and pets. (grinning)
you Jamie and Karen, another great newsletter.
Hello Jamie & Karen,
Thank you for posting the letter to caregivers written by an Alzheimer's patient. It helps so much to understand the situation from their point of view and so little is written about it. The book, "Living in the Labyrinth" by Diana Friel McGowin is one I found helpful when my mom was alive and I was caring for her. This also was made into a TV movie, I believe. The author was an Alzheimer's victim.
Thank you for all your letters and articles....You all ARE The Ribbon!
Happy Spring on March 20!!!