Volume 1, Issue 12 - The Ribbon Newsletter

I hope everyone is weathering the heat by staying cool. Remember that our Loved Ones with AD often do not dress appropriately so please watch out for them and please keep them hydrated if they spend any time outdoors.

One of the hardest parts of dementia can be in dealing with the behaviors of people with this illness. Dementia damages the brain so the person is unable to make sense of what he or she hears or sees. This confusion may make the person frightened. The behaviors that occur are a way of reacting to that fear. most of these behaviors are not under the person's control and he or she is usually trying hard to adjust. Here is a list of some of the behaviors that are common with dementia, specifically Alzheimer's Disease. The behaviors differ among patients. You may not face all of or even most of the problems listed here. But if you do face problems, one of the first places to seek help is the local Alzheimer's Association.

CATASTROPHIC REACTION: A catastrophic reaction is an outburst of emotions. It is usually in response to a feeling of failure or of being overwhelmed. It may include behaviors such as crying, sudden mood changes, anger or fighting. Catastrophic reactions usually occur during the morning hours, when daily care activity is the highest.

YELLING OR SCREAMING: Yelling or screaming may occur for a variety of reasons. It may result from overstimulation, meaning there might be too much going on, too many people around, or too much noise around the patient. it could also result from boredom or too little stimulation, meaning the patient needs more contact or more activity. Finally, yelling and screaming may be caused by pain, hunger, fear, or depression.

FIGHTING: Fighting is dangerous because of the potential harm to others. It often occurs when the patient misunderstands a situation and the caregiver seems to be threatening to the patient. Perhaps the caregiver gets too close to the patient or moves too quickly. Fighting might also occur because the patient feels no control over what is happening to him or her. The patient sees fighting as a way of getting back some of that control at that moment. Patients with dementia might not know how to deal with anger in any other way than fighting. It is a defensive response.

WANDERING: Wandering might be how a person copes with stress, boredom, or need to exercise. Sometimes, it reflects the need to search, a sense of feeling lost, or acting out a past work role. Other possible reasons for wandering are physical, including feeling pain needing to urinate or medication side effects. It can also be driven by changes in the brain. There are generally four types of wanderers:

RESISTING CARE: Sometimes, dementia patients refuse help getting bathed, dressed, and/or fed. Resistance may occur if the patient doesn't understand what is wanted and feels rushed or treated roughly. It can also result from fear of being treated poorly or being dropped. Also, refusing care might be a way of getting control over a situation in which he or she feels threatened. Finally, resistance might occur if the patient is cold, embarrassed, or fears water.

SLEEP PROBLEMS: Sleep problems include problems falling asleep and/or waking up during the night. Sleep problems might occur for many reasons, such as normal reduced need for sleep among the elderly, pain, the need to go to the bathroom, use of food or drinks with caffeine during late afternoon or evening, and too much napping or inactivity during the day. Additionally, the sleep/wake cycle can be altered by changes in the brain.

VERBAL AGGRESSION OR OUTBURST: Verbal aggression includes arguing, cursing, threatening, or accusing. It may come as a part of resisting care, a catastrophic reaction, or during fighting, or it may occur separately. Anything that causes stress might bring about this behavior. Verbal aggression might be the only way a dementia patient can show anger. It is important to remember a person with dementia who is verbally aggressive usually does not know or mean what he or she says.

UNJUSTIFIED COMPLAINING: Complaining without reason can be very bothersome. Often, the caregivers feel guilty about the care he or she is giving and complaints make the caregiver feel worse. The complaining may often take the form of being constantly concerned about health. These complaints can occur for a variety of reasons, including low self-esteem, need for attention, lack of stimulation, or depression. Other behavior problems include: LOSING, HOARDING OR HIDING THINGS, RUMMAGING IN DRAWERS AND CLOSETS, INAPPROPRIATE SEXUAL BEHAVIOR, REPEATING QUESTIONS, REPETITIOUS ACTIONS, CLINGING OR FOLLOWING, FORGETTING PHONE CALLS, and MAKING FREQUENT DEMANDS.

SUNDOWN SYNDROME: People with dementing illnesses seem to have more behavior problems in the evening. This worsening of behavior is often called "sundown syndrome". The cause is not yet understood but if you find that your patient has this problem, some careful planning of the daily schedule can help. For example, do not schedule bathing or going out for an outing in the evening. Also, establish an evening routine so that the patient will not become more confused.

SHADOWING: Sundowning is often accompanied by "shadowing", where the person with Alzheimer's disease follows or mimics the caregiver, or talks, interrupts, and asks questions all the time. At times, the person might become upset if the caregiver wants to be alone.

PARANOIA/SUSPICIOUSNESS: It is not uncommon for persons with progressive dementia to become suspicious or paranoid. The person might accuse his spouse of cheating or stealing money or might think that other people are trying to find him and harm him. Many times, reassurance does little to relieve the patient. In these situations, distracting the patient with an activity or favorite topic might be helpful.

DELUSIONS AND HALLUCINATIONS: As the disease progresses, the Alzheimer's patient might begin to have delusions or hallucinations. Delusions are fixed false beliefs, and an example might be when a patient believes that someone is trying to kill him or steal from him. A hallucination is when a person experiences something through his senses that other people do not. An example of a hallucination might be hearing voices or seeing children at the foot of the bed.

Behaviors have different causes in different people and different solutions will work in different households. The following are called the "6 R's of Behavior Management" and might be helpful in dealing with problems that arise.

Restrict. First, try to get the person to stop whatever he is doing, especially when there is a danger of hurting self or others. Speak calmly and address the patient using simple commands.

Reassess. Ask yourself what the cause of the behavior might be. What happened just before the behavior began? Is there a physical problem? Can the source be removed or lessened? Could it be approached in a different way?

Reconsider. Try to consider the person's point of view. How must the things that are going on seem to the patient? What is she or he thinking?

Rechannel. Look for a way to continue the behavior in a safe way or look for other means of using some of the energy. Redirect the person to another activity. Remember, the behavior is important to the patient in a way we cannot understand.

Reassure. Take time to reassure the person that everything is okay and that you still care about him. Let him know that you are still going to care for him.

Review. Afterward, think over what happened and how it was managed. What will you do if faced with this problem again? Often dealing with behavior problems is difficult because the caregiver takes the behavior personally. It is important to accept the behavior for what it is, a symptom of the disease. It is also important to acknowledge that many times behavior problems become so difficult that they require medical intervention. There are a variety of medications that have been effective in controlling or limiting behavior problems. The local Alzheimer's Association has a list of doctors that specialize in Alzheimer's Disease.

Elder Care Roughest on Daughters April 22, 1998 Compared with wives who care for a spouse with Alzheimer's disease of some other form of dementia, daughters caring for a similarly afflicted parent experience more cardiovascular stress, a new study shows. Dr. Abby C. King of Stanford Medical School and colleagues studied 81 women, from 50 to 85, who acted as primary caregivers to a family member with Alzheimer's disease, Parkinson's disease or stroke. Fifty-seven of the women were wives caring for their husbands; the remainder were daughters caring for a parent. Researchers found that while blood pressure and heart rate were nearly identical for both groups when they were not taking care of their sick relative, the daughters' heart rates and blood pressures rose significantly more than those of the wives when they were. In hourly records of their activities and feelings, daughters also reported more stress while taking care of their ailing parent than wives reported with their husbands. This is the first evidence of a differential physiologic effects of caregiving in the natural environment for daughters versus wives, said King.

Easing Elder Anxiety Aggressive behavior by elderly patients who suffer from dementia is a major cause of injuries in nursing homes. Now, two studies suggest that low doses of the sedative risperidone can safely reduce anxiety and behavioral disturbances in seniors with dementia. In one study, researchers from Belgium found that aggressive behavior dropped 30 percent or more in nearly three-fourths of dementia patients given risperidone for 12 weeks. Meanwhile, an American study found that only one patient in 216 had noticeable side effects from the drug. -- Source: Reuters, June 10, 1998

Lucinda89's aunt passed on Saturday, June 13
Folks please send emails to let them know we care.

From B315 Dr Mom, I am a newcomer to the chat room, and feel that I have gained so much in such a short time. My hubby is in one of the early stages of Alz, although he keeps crossing over into the next stage, then reversing to the previous one. The insight I have gained from the group has been so beneficial. The Ribbon is also a source of extremely beneficial information. I have received Nos. 9, 10, and 11. So far and would love to have Nos. 1 through 8 if they are still available and you have the time to send them. One here and there instead of simultaneously will be just fine, whenever it is convenient. No. 9, with the care giver's list, was such an awakening for me. When you have been married a long time, you sorta feel like Velcro, so it is hard to establish activities that exclude one or the other. However, since reading that issue, I have cranked up on volunteering at Jamestown and have signed on for session of oil painting for the summer. Also, I have engaged house cleaners for one morning a week which will free up time for me to spend with hubby. He loves to go for long rides. Also, I have made an appointment with an attorney to get our legal affairs in order. So, thanks to you and your other hosts as well as the members , I have decided on two courses of action : (1) Develop financial, legal, and caregiving plans to cover as many bases as possible and (2) Do something every day for myself so I can take care of hubby every day. Thank you for all the nice things you do for people. Beverley Dorman

From GivinCare Thank you for a terrific newsletter! Not enough information is available to prepare most of us for the terminal aspects of this disease. This information will be a tremendous help to those approaching the final months, weeks and days. Debi Owens

From Huedeefish Thank you very much. I especially appreciated this Issue #11 received today, June 11th, since my husband is evidently in the last stage of AD. Even though I have been appraised of what to expect for quite some time, I now have everything pertaining to the last stage in black and white. My husband is receiving wonderful care in a Care Center now as of the last week in December of 1997. I go over and spend 2-3 hours with him each day and often twice a day. Again, many thanks, Karen and Jamie, for all the help you give us caregivers and our families. In Appreciation, Dolores (Huedeefish)

From KG2 Thxs For continuing to send news letter ,even tho I don't have a family member with it. Just friends who have family members who have it. I especially liked the article on Mr. Goldwater.. I have met the man in his better days,and it was a honor to be in the same room. Well, Just mainly wanted to say thank you and will look forward to future Newsletters. Bless you both, the BHOSTS, and the room, KG2

From lawsonj@wmis.net Karen - I always look forward to the newsletters. You seem to look forward to ideas for the newsletters. 1) I'm always looking for feedback on how family members help children with the understanding of AD. When a loved one (Grandma, Dad, Uncle Buck etc.) say off the wall things or cruel and hurtful things they can't always accept the explanation "He didn't mean what he said" when they darn well just heard it. It is difficult enough as an adult to ignore or deal with cruelty on bad days but children..... 2) How about running a quick meal suggestion. When I am ready to drop and I know I have six people to feed I'm not about to fix a box of Mac and cheese or call out for pizza five days a week. I have about six "quickies" that I fall back on but I think I've almost overdone it lately! 3) Guilt ! I try to deal with my own guilt on a daily basis. Do I do enough; Do I do to much and smother them; Would life be easier if they would just die; I don't want to be around them because I'm losing my own life. (Get the idea?) then we have a series of good days (or weeks hopefully) and I wonder how I ever could have thought such nasty things. Support groups help but they don't always meet when you are having these feelings. thought maybe it would be nice to see in print. Thanks for all your work !! Gloria Editors note: Hey you guys, these are great ideas!!! Send any ideas or receipes to KMenges581.

The Positive Interactions Program of Activities for People with Alzheimer's Disease. By Sylvia Nissenboim and Christine Vroman. Published by Health Professionals Press, P.O. Box 10624, Baltimore, Maryland 21285-0624

This book has only just been recently published (1998) and may be hard to find. But for new caregivers (whether at home or in a day center/nursing home) it will be a valuable tool. The book talks about how to give care in a gentle manner, being at the person's level and not at the caregiver's expectation level. One of the big messages of this book is to look at the person's remaining strengths and not so much at their weaknesses. For those who are familiar with Naomi Fell's Validation Therapy, much will seem familiar. One big difference in this book is a separation of three stages to the illness as opposed to the seven that is normally seen. This program was developed by the authors at a day center for seniors in St. Louis. They began to notice more and more impaired seniors coming through their doors and worked to find ways to give these people failure free experiances. A helpful portion of this book are activity ideas. They are broken off into four sections, including arts and crafts, and sensory stimulation. As a caregiver in the field, I have done many of the activites suggested. With the guides the authors give to makes these activities successful, they are truly failure-free. The authors also make a point not to give childish items or use childish techniques or equipment with your loved one/client as a matter of respect (crayons vs. markers). For people who have been doing this type of care for several years, it may seem like the preacher speaking to the choir. It is a relief to hear more people talking like this in giving care to a person with Alzheimer's. But there were times I wished the authors had gone further with some ideas that were brought up and dismissed in a sentence. One of these was intimacy between spouses when one is impaired and how the manner in which it can be acheived could be altered. I would have liked to see this idea explored more thoroughly. This is a good book for those who are new to caregiving for those with Alzheimer's or other memory disorder illnesses. There are many ideas for things to do with your loved one at all levels of the illness. The authors mentioned some criticism of their program causing more work for the care taker. But I feel it can help caretakers develop better skills that are needed for dealing with a person who has Alzheimer's Disease or other dementias. I can only hope that more books like this come out for the public.

POEMS

THE WEEPING WILLO TREE

Sadness falls beneath the trees,
As Willo weeps with me.
Don't walk away yet Mama,
I've more for you to see.

I wonder where I'll be someday,
When Mama isn't free
To tell her daughter how she feels,
Her daughter....that is me.

Don't walk away yet Mama,
I need you in my life!
I try to do the best I can,
But that's not even right.

So happy, such a sparkle,
You gave with such a style.
Now hidden deep within you,
I miss your loving smile.

Don't walk away yet Mama,
We've just begun the fight.
I'll walk with you forever,
Or till you see the light.

My heart breaks deeply for you,
Why can't I make it clear?
I'll be there with you Mama,
Until the end is near.

Don't walk away yet Mama,
Why did this have to be?
Don't walk away yet Mama,
You are the world to me.....

The Willo trees are weeping,
And tears are flowing free.
Hearts are breaking everywhere,
You've walked away from me.....
And Willo weeps with Me.....

Loraine ' 98
<WilloRain>

WHEN YOU GET LITTLE AND I GET BIG

All the times you gave your day to Robbie and me and children's play,
When you had so much else to do, but dropped it all with an "I love you."
You'd let us draw or sing a song; you drew the line of right and wrong.
You told us what we could do then, or how it'd be "one day when..."
We were much too small to understand how life would be as a woman or man.
But you guided us and let us be the children that we were meant to be.
You'd let me dress up in old clothes and stand there in a wig.
I'd say to you with chest puffed out, "When you get little and I get big..."

"When you get little and I get big, I'll do these things for you.
I'll find your clothes; I'll wipe your nose; I'll make you a nice dress.
I'll keep you warm and away from harm and show you how to rest.
I'll talk with you and let you know whatever's right and wrong,
And if you ever start to cry, I'll cheer you with a song.
I know I'm very small right now, but there may come a day
That you'll be little and I'll be big, so I promise to repay
The precious love you give to me as I depend on you."

Now years have passed and I've become what you helped me to be.
A woman who can brave the storms and use her love to see.
A woman who with tons of tears discovered in the middle
That I was big, but God had somehow changed you to be little.
I understand what "big" can mean in this old, changing world.
I remember how you cared for me and when I was a little girl.
I remember all those happy years and what you'd say and do.
And I use that memory now to do the exact same things for you.

A memory you no longer have,
But that's OK, my dear.
For now you're little, but I am big.
And you have nothing to fear.

_____Sheryl Gaskins, Friend of Linda Darby

Sent in by LIZA 513

This is one of the poems I wrote about my Dad. I'm not sure which one I sent you before. It has been published in our local alzheimers newsletter. In fact, allof my poems about this journey with him have been published.

If Dutch Could Talk: by Marsha Dumeyer Drescher MDres0608

Although I walk aimlessly around
From hall to hall with my head hung down
If I could unscramble my jumbled mind
I'd want to think you for being so kind

My children watch as you gently care for me
And pray to Our Lord that patient you'll continue to be
I have taught them that everyone has a cross to bear
Theirs is lighter because you are there

This deck of cards that has been dealt to me
Is made so much easier because you treat me with dignity
Your gentle touch and loving words
You probably think go unheard

If I had imagined I'd end up here
A mixed up man whose mind isn't clear
I would have lived my life differently,
Oh yes I would I would stop and smell the roses like we all should

My loved ones know your days are long
And believe you'll make it to heaven where you belong
I'll probably get there before you do
But I'll wait with St. Peter to welcome you through

Those pearly gates in heaven above,
That place reserved for those who love
When you see me, say Howdy Dutch,
I'll finally thank you, Oh So Much

dedicated to the staff at my Dad's nursing home

A request from us to you. Please keep us in your thoughts as Karen makes her move in about 3 weeks to be nearer to her mother. This is a big move and now she will be the primary caregiver instead of a long distance caregiver. I will be driving to Michigan next week with my mother to attend a family reunion. I'm hoping my grandfather will stay well enough for me to make this trip. I need the break. LOL