The Ribbon - Care for Caregivers
Volume 6, Issue 5
March 10, 2002

www.TheRibbon.com
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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.


Stages of Alzheimer's Disease: 7 Stage Model
Global Deterioration Scale for Assessment of Primary Degenerative Dementia

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:
Forgetting where one has placed familiar objects.
Forgetting names one formerly knew well.
No objective evidence of memory deficit on clinical interview.
No objective deficits in employment of social situations. Appropriate concern with respect to symptomatology.

 

Stage 3: Mild Cognitive Decline (Early Confusional)

Earliest clear-cut deficits.
Manifestations in more than one areas:
Patient may have gotten lost when traveling to an unfamiliar location.
Co-workers become aware of patient's relatively poor performance.
Word and name finding deficit becomes evident to intimates.
Patient may read a passage or book and retain relatively little material.
Patient may demonstrate decreased facility in remembering names upon introduction to new people.
Patient may have lost or misplaced an object of value.
Concentration deficit may be evident on clinical testing. Objective evidence of memory deficit obtained only with an intensive interview.
Decreased performance in demanding employment and social settings.
Denial begins to become manifest in patient.
Mild to moderate anxiety accompanies symptoms.

 

Stage 4: Moderate Cognitive Decline (Late Confusional)

Clear-cut deficit on careful clinical interview. Deficit manifest in the following areas:
Decreased knowledge of current and recent events.
May exhibit some deficit in memory of one's personal history.
Concentration deficit elicited on serial subtractions.
Decreased ability to travel, handle finances, etc.
Frequently no deficit in following areas:
Orientation to time and person.
Recognition of familiar persons and faces.
Ability to travel to familiar locations.
Inability to perform complex tasks.
Denial is dominate defense mechanism.
Flattening of affect and withdrawal from challenging situations occur.

 

Stage 5: Moderately Severe Cognitive Decline (Early Dementia)

Patient can no longer survive without some assistance.
Patient is unsure during interview to recall a major relevant of their current lives, e.g., an address or telephone number of many years, the names of close family members such as grandchildren, the names of the high school or college from which they graduated.
Frequently some disorientation to time (day of the week, season, etc.) or place.
An educated person may have difficulty counting back from 40 by 4's or from 20 by 2's.
Persons at this stage retain knowledge of many facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names.
They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

 

Stage 6: Severe Cognitive Decline (Middle Dementia)

May occasionally forget the name of the spouse upon whom they are entirely dependent for survival.
Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is sketchy.
Generally unaware of their surroundings, the year, the season, etc.
May have difficulty counting form 10 both backwards and, sometimes forward.
Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations.
Diurnal rhythm frequently disturbed.
Almost always recall their own name.
Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment.
Personality and emotional changes occur. These are widely variable and include:
Figures in the environment, or talk to their own reflection in the mirror
Obsessive symptoms, e.g., person may continually repeat simple cleaning activities
Anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur
Cognitive abulla i.e., loss of will power because an individual cannot carry through long enough to determine a purposeful course of activity.

 

Stage 7: Very Severe Cognitive Decline (Late Dementia)

All verbal abilities are lost. Frequently there is no speech at all - only grunting.
Incontinent of urine, requires assistance toileting and feeding.
Lose basic psychomotor skills, e.g. ability to walk. The brains appears to be no longer able to tell the body what to do.
Generalized and cortical neurological signs and symptoms are frequently present.

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.


Teleconference

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?

Some suggestions:

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.

Behavior
2/3 of patients diagnosed with a Dementia have behavior problems. The disease changes their perception of their world. You have to change your thinking as they cannot. Do NOT try to control the behavior, it's a lost battle from the beginning. Instead, try to figure out what's causing the reaction and see if it can be changed.

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)

Bathing
This is a problem in my house. First of all, Nanny does have the problem of keeping up with the days of the week. She will tell me that she had a bath yesterday or even this morning. Now I know that's not true. I do not insist on her bathing every day. Studies have shown that an elderly person does not have to bathe daily as their skin is usually very dry. A good wash up will suffice on the days there is no bath. I have Nanny bathe every 2-3 days because of her very dry skin. A good suggestion is to put a mosturizing lotion on the wet skin and then pat the body dry.

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
Welcome to the Alzheimer's Association

Jamie@TheRibbon.com


Developing New Traditions
by Mary Emma Allen

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

(Mary Emma Allen shares more "moments in time" in WHEN WE BECOME THE PARENT TO OUR PARENTS and FINDING THE JOY IN ALZHEIMER'S. Visit her website: http://homepage.fcgnetworks.net/jetent/mea;
E-mail: me.allen@juno.com)


Book Review

Waiting for the Morning
A Mother and Daughter's Journey through Alzheimer's Disease

by Brenda Parris Sibley

Synopsis of Book:
Evoking both tears and laughter, all of the emotions of Alzheimer's caregiving are expressed in this chronicle, through moving poetry, journal entries, and photos from family albums through the years.

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.

Author Biography:
Brenda Parris Sibley is author/webmaster of the award-winning Web site, A Year to Remember
http://www.zarcrom.com/users/yeartorem
She was her mother's caregiver August 1994 through December 1995. Brenda is a librarian at Calhoun Community College and lives with her husband Richard in Decatur, Alabama.


Medical News

From LD4TPC

Plasma homocysteine as a risk factor for dementia and Alzheimer's disease.
Read the article at: N Engl J Med. 2002 Feb 14;346(7):466-8


Email Bag

From JRNYWMN

Hi you all,
I'm slow getting at my mail these days, so only just read #3. Just a note on the medical history form. Vicki's form is quite a bit neater than mine, but she was right on...the information I've accumulated and provided to the doctors has been very well received. I mean, really, who has a clue what a person has been through in 84 yrs (in my mother's case). It still blows me away when a doctor asks when she completed menopause, or when she had her last period. But thankfully, I just whip out her record. Please do it, if only for your ease in handling your loved one's business. Ann


From CAREVOICE

Hello The Ribbon Readers,

Three items in the 02/24/02 issue of The Ribbon compelled me to write.

The FIRST was written by David who has Alzheimer's. His advice (below) is appropriate to ALL of us! I really thought about what he wrote (below) We must listen--truly listen to one another. And then we must answer first the question that is asked. So often, in this rush-rush world, we try to get a lot of "exercise" by "jumping" to conclusions and asking questions that weren't asked (yet). First, answer the question as David notes below then if you wish to add something, pause and then add the information. However, I'll let you in on a little relationship secret. If you wait for the other person to ASK you another question, you have engaged that person in give-and-take conversation; and you have taken one step toward improving the quality of your relationship. To think all that we can learn from a person with Alzheimer's!

Give the person with Alzheimer's time to hear your words and prepare a response. Keep in mind that it takes up to a minute for the person with this disease to respond. Please listen when I talk, I have taken time to put the words together and I will not be able to repeat it. Example: I asked if my daughter and grandchildren were coming on Sunday? My care giver answered that her husband was under the weather (feeling bad) and they would see us Tuesday. Now how in the world, when I asked if grandchildren would be here on Sunday, now why are talking about the weather on Tuesday!!!!!!! A no, would have been satisfactory. Then I could have asked for more details if I was interested.
Written by: David Spanel spada@att.net Sept. 6, 2000

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 (proudmom3@yahoo.com)

Genuinely Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Speaker and Author, "Where's my shoes?" My Father's Walk Through Alzheimer's (also AVAILABLE in Audiobook and in the German language) and Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times.

(Editor's Note: You will receive a discount on two of Brenda's Alzheimer's books by clicking on the link below...
Bookstore - TheRibbon.com
http://theribbon.com/books/)


From Damit2

Dear One (s)
It has taken me a while to respond to the lovely memorial that you all have put together.....I am overwhelmed.

As for me same o'l stuff......work eat sleep I am returning to school part time and going back into the arts (I hope) Am trying to get a graphics arts position that will open this spring, so am enrolled in a number of computer graphic arts courses...really interesting and I am getting so that auto mechanics is getting to be harder on the old body.....Maybe I can get a desk job or start my own business!!!!!!!thanks to everyone for all their thoughts and love....
Chuck, Dawn, and the cats!!!

Editor's note: This is Alzjane's husband, daughter, and pets. (grinning)


From AZUREE1650

Thank you Jamie and Karen, another great newsletter.
Care taking can be stressful at times, yet we must be reminded now and then, that our loved ones need the attentiveness and patience they so deserve. I have cared for my dear Mother for seven years and your newsletter has been most helpful!
Thank you!


From me.allen@juno.com

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.

Mary Emma

Mary Emma Allen
Author of "When We Become the Parent to Our Parents"
me.allen@juno.com
http://homepage.fcgnetworks.net/jetent/mea


Thank you for all your letters and articles....You all ARE The Ribbon!

Happy Spring on March 20!!!

Hugs and Peace,
Karen and Jamie

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