Volume 5, Issue 8 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 5, Issue 8
April 15, 2001
www.TheRibbon.com
1104A Murfreesboro Pike PMB 114
Nashville, TN 37217-1918

Here it is EASTER!! Can you believe it's that time again? Pastel colors, bright colors, flowers blooming!! It seems that along with the beautiful weather we've had here that it is making my grandmother want to pace more. What to do, what to do?

One solution... my sister is coming for a visit from SC this weekend....we are planting a flower garden with bird bath in between my house and my grandmother's. (we live next door to each other). I'm hoping it will help give my grandmother a reason to come on outside and give her something to do. She has always had a green thumb, we've sworn she could stick a stick in the ground and it would grow. She is still remembering some things about flowers so we are enlisting her input as to what to plant. I think we will call it "Sister's Garden of Love for Nanny".

I hope your Easter will be enjoyable and full of memory makers for the years to come.

To Diaper Or Not To Diaper? Is That a Question?: Alzheimer's Disease and Incontinence

by Beverly Bigtree Murphy, MS, CRC, Caregiver
More About Beverly...

You can call "them", adult diapers, incontinence pads, "those things", or any other euphemism you can think of, but they are what they are. Their purpose is to keep an adult's bottom neat, and clean, save wear and tear on clothing, bedding and furniture, and give both the loved one and the caregiver release from being within 10 seconds of a toilet. To dwell on what to call them is a waste of time and just another form of denial and procrastination.

The question isn't:

Should incontinence products be used at the risk of compromising the dignity of our people facing Alzheimer's Disease?

The questions are:

How do we approach someone with Alzheimer's Disease, who is unable to understand the need for incontinence products or integrate the ramifications of not using them?

and

How do caregivers navigate, what I feel is the greatest barrier to home care, if, instead of information on how to deal with incontinence and the developing behaviors, they are only told it is time to institutionalize their loved ones?

First:
Over 4,000,000 men and women are diagnosed with Alzheimer's Disease in this country. All of these people will need to use incontinence products before they enter the last stage of this illness.

Caregivers who have made a successful transition to this aspect of care include: wives, husbands, grandchildren, adult-children, friends, and professional caregivers, all of whom experienced an inherent reluctance in the beginning.

And this is basic: We all begin this odyssey as reluctant caregivers. None of us breeze through this illness. It is a learning process from start to finish.

Second:
Dignity has nothing to do with being able to wipe our own bottoms, and, using incontinence products is not a prelude to Indignity. If this was so, then Christopher Reeve and everyone else dealing with spinal injuries, Multiple Sclerosis, ALS (Lou Gehrig's Disease), Cancer and a host of other illnesses would be without dignity because of their inevitable incontinence problems.

Dignity is in the eyes of the beholder and it incumbent upon us as caregivers to continue to endow our people with that attribute regardless of what this disease does to them.

Dignity is too easily stripped from our people by the world around them because they are thought to have no feelings as well as no thinking process. This is the result of bias and everyone involved in this drama is at risk because of this bias.

Third:
Alzheimer's Disease is probably the only disease that can aptly be described as being the opposite of birth. The layers of learning that were carefully imprinted on the brain from birth are being eroded away and our people lose abilities in much the same order as they were acquired. Becoming totally continent (able to handle every aspect of hygiene) is at least a 5-year process for a newborn and even then there are few parents who would allow unsupervised bathing. It takes approximately the same amount of time for an adult with Alzheimer's to become totally incontinent. It begins with the first fumblings with clothing as. eye-hand coordination is affected. It moves through rote memory which allows us to dress and bathe without consciously thinking. through every step, and ends with the severing of the brain signals to the body and total inability to control bowels or urine.

Incontinence results from progressive brain damage. It isn't about forgetting where the bathroom is.

Our most sacred role as caregivers, is to help our people move back through the process of life with dignity, acceptance, and love.

Alzheimer's Disease and Incontinence

Like most everyone else, I was out there on my own as I approached this aspect of care with my husband, Tom. I was also inundated with the attitudes of a public already primed to see my caregiving as a burden and an unnecessary sacrifice.

Of the books written about Alzheimer's Disease I found many devoted as little as a paragraph to the topic of incontinence care.

The "helpful hints" lists, while potentially helpful to people who still had their reasoning abilities, did little to help our situation. As one example, if Tom no longer knew how to find the bathroom, why would a cue card taped to the door with the word "Bathroom" printed on it help? It didn't. The hints were more about avoidance of the inevitable, in my opinion.

Generally, the practical advice I received from my "professional helpers" did little more than encourage me to institutionalize Tom. Incontinence is not a reason to institutionalize. For one thing, the first problems with toileting begin while your person is still able to be a viable part of their world and yours. For another, incontinence care is doable even when they are bed-ridden. Countless families maintain their people in their homes until they die. Whether or not the person can identify their surroundings has nothing to do with the care tasks of any terminal illness.

However, incontinence care is more complicated with this disease group than others because of the inability of our people to give us permission to do what has to be done. This makes crossing the barrier to privacy more difficult for our caregivers, but it doesn't make it impossible. Christopher Reeve had no more choice in his care needs then did Tom and like Mr. Reeve, Tom's adjustment had more to do with the attitudes of those who tended him than anything else. The problems of dealing with hygiene are also impacted by every change in functioning this disease throws at our people. The care isn't just about buying that first bag of pads, it involves a great deal of educating and understanding of the why and how this disease works. And it involves a constant reaffirming of how much our people need reassurance, love and regard.

It's Just Poop People! It Isn't Toxic Waste.

Bodily functions are a part of life. Once your person is having more than "occasional accidents" they have entered th world of incontinence and nothing you do, no amount of reminders, notes and signs on doors, or running them to the bathroom 80 times a day will change the course of this disease. You need to take charge the same way you take charge of a baby's needs, and drawing a comparison to parenting is not so far off the track, in my opinion. As parents we are the means to our child's future. We not only take responsibility for their care, we support, encourage, assist, influence and finally, let go. That is also a fair appraisal of the caregiving role. Like it or not, someone has to take on the responsibility.

That being said, caregivers still need to be prepped on a multitude of issues that revolve around bathing, toileting, dressing and moving them safely from bed to wheelchairs as they lose their ability to walk, stand, sit, and bend. They need help working with the behaviors that develop and ways to circumvent potentially volatile situations all of which impacts incontinence care.

Caregivers need to know about...

The changes that occur in skin quality and muscle density and how the weight loss that happens towards the last stages of care affects hygiene care.
The danger of pressure points and how quickly they can escalate into bedsores that require hospitalization.
The way to bathe and change pads with a bed-bound person.
How to avoid bruising when transferring from bed to a wheel chair or shower chair.

Tom and I survived a total of 10 years of incontinence care. 4 of those years he was bedridden. As our 10-year drama unfolded, it occurred to me that this topic deserved a little more attention than the attention it was getting.

A Caregiver's Experience and Wisdom

I discovered, and I think caregivers need to recognize this:
Too many of our advice-givers are dealing with their own unexplored issues about incontinence care and what is essentially an unacknowledged bias about Alzheimer's Disease in general. They also lack basic information and experience on incontinence care for this population. Consequently, they tend to rely on information designed for people who still have their thinking process, which just doesn't work for our people.

As for me, I grew into the experience, as will you. My success in handling the early problems built confidence to face those that came towards the end. It took seeing my role in terms other than those of drudgery and it took creativity and a lot of resolve, but I eventually worked out our own "ritual" regarding the tasks, as will you. As my friend Debi said, in dealing with her mother's incontinence problems...

"After you take care of that first bowel movement, you get past the hang up and move right into taking charge of the situation. The fear of dealing with it was far greater than the reality of doing it."

Trust me on this one, your loved one's fears, anxieties, and sense of dignity will correlate directly with your own. And so, the biggest challenge you have as a caregiver is in your own attitudes.

There are certain basics that help you through the initial period:
Learn to hover. You assist them when they need help. In other words, you become a presence. Keep the discussions, the reasoning, the details of what you are doing to a minimum. Don't ask if they need help because they will only say no. Keep your voice low and keep noise to a minimum.

Lay their clothes out for them and have their grooming tools ready for them. Be mindful of their 'dressing ritual', and maintain it. Learn which garment goes on first, which arm goes into which sleeve, etc. while assisting them in their dressing. This pattern was laid on at birth. In a sense you become their valet.

Set the water temperature for them, just as you would for a small child.

Work from behind them. Your presence is less obvious that way. The nature of their illness lessens their awareness of activities that aren't directly in front of them.

Treat the use of pads as if they are simply another part of the dressing routine. Do not say things like: "It's time to change your diaper Dad."; Speak in terms of 'showering', 'getting freshened-up' and 'preparing for bed'. There is no need to constantly remind them of their problems and they cannot remember your explanations from one event to the next anyway.

Don't look for permission to use incontinence pads. The decision to use these products is your choice, not theirs, and the less you make of it, the better.

Be organized. Have your tasks laid out ahead of time. Scurrying around looking for the items you need only adds to their anxiety. The object is to work as efficiently and as competently as possible. If there is clean up to do, do it after they are dressed and out of the area.

Making the Bathroom Alzheimer's-Friendly

The bathroom is one big booby-trap for the brain trying to deal with this disease and it is often the one room in which a combative episode erupts.

Sound is magnified by the tiled surfaces, running water, and the raised voice of an often stressed caregiver pushed to the edge with trying to get their loved one to use the toilet/bath properly. These are the major ingredients for a catastrophic reaction and one that can result in injury to both parties equally.

There are some changes you can make in the bathroom environment to make it more user-friendly to someone with Alzheimer's Disease:

Mirrors add to the distortions their brain is already heaping on them. The AD brain will have a difficult time distinguishing what is a reflection and what is an extension of the room. Undressing them may lead them to believe a crowd of people are in watching them being stripped of their clothing.

If you have a medicine cabinet type mirror which shows the body from the shoulders up, you are fine. If you have a wall-to-wall mirror, remove it or plan to cover it. There is an element of protection, security, and privacy that happens when that mirror is gone and no one wants to watch you cleaning someone's bottom, including you.

Change the knobs on sinks and tubs to handles. The knobs give no clear indication of on or off. The result is water left running and water that can be scalding hot. Handles give your loved one a fighting chance of figuring it all out for a longer period of time.

Get rid of the glass sliding doors in the bath. They are an accident waiting to happen. Install a shower rod, which is bolted to the walls, and buy a sturdy cotton duct curtain with metal grommets that can't be torn through.

Purchase a lightweight hand held shower nozzle with at least 7 feet of hose. Eventually they will need a shower chair or bench and you will need to reach around, under, and over them without restrictions. They will also develop problems moving under the showerhead to rinse themselves. The hand held nozzle allows you to move the water to them without splattering them in the face.

Simplify the environment by removing bottles, makeup, pictures, do-dads etc. from the counter and wall space. Give them as clean a surface with as little distraction as possible. This includes highly patterned wallpaper. A friend of mine painted over the trellised paper covered with birds and flowers in her bathroom and discovered that her father no longer fought going into that room. A colleague of mine, a director of one of the most well regarded adult-day programs I've seen, once said, that when one of her participants has a catastrophic reaction, 90% of the time it's the result of misinterpreted cues, something the caregiver inadvertently did, or something the environment triggered. Environment and attitude are the keys to working with this population successfully.

I know from experience that none of this is easy but if you are determined to keep your person home as long as possible this is a beginning. We caregivers are faced with changing roles as well as crossing privacy barriers. Having crossed that particular barrier myself, Tom's adjustment to incontinence products and my entering his private space was quicker than I ever anticipated and it had to do more with my attitude towards the tasks than anything else.

I Leave You With This Thought:

If we treat our people like failures they will respond accordingly. If we treat them with respect and sensitivity then we are affording them a sacred trust. We can't give them a greater gift.

Incontinence care for Alzheimer's Families: Understanding and Finding Creative Solutions to the Behaviors That Challenge Caregivers. http://www.bigtreemurphy.com/ e-mail: bigtreemur@aol.com

This is a web site devoted to challenging the bias that exists about this disease as well as offering practical insights into the behaviors and needs this disease brings to families.

He Used to Be Somebody: A Journey Through Alzheimer's Disease Through the Eyes of a Caregiver by Beverly Bigtree Murphy

This is the book I wrote about Tom's and my life with Alzheimer's. Although it is in narrative form it is also a case study of a disease process. It shares how I worked with the symptoms and found viable solutions to our problems. My 25 years as a Rehabilitation Counselor allowed me to view Tom's needs in terms of working with what was left of his abilities instead of dwelling on what was lost. I hope this outlook will help others facing this particular challenge. I was able to keep Tom home through the duration of his illness and it that respect this is the only book that deals exclusively with home care issues.

The Complete Guide to Alzheimer's-Proofing Your Home by Mark Warner

This book is a must for caregivers and professionals facing the challenges of Alzheimer's. It is the first book I've read, devoted to Alzheimer's care, that offers something more than reasons to institutionalize our people. Caregivers need information, options and where to access tools and resources before they can make informed decisions about their choices or their role as caregiver. This volume speaks of caregiving in positive, life giving, do-able terms and not the drudgery that we are all led to believe consumes the process. It focuses on the continued humanity and needs of our family members for love and regard in spite of their loss of cognitive skills.

In Passing: Those We Must Remember

From CAREVOICE
dated 4-1-01

Hello All,

I have sent this as a blind eMail to a few lists and different people, to let all of you who have walked this caregiving journey with me that my father, Martin Avadian passed away Saturday, March 31st at about 6:40 p.m. (PT). He wanted to live to see the year 2000. Although he didn't know it by this time, he had exceeded his expectations. He was 90. He was tired and now can finally rest. We will be arranging a Memorial Service but do not yet have any details. For those of you in the Southern California area who would like to attend, please write me Wednesday and Thursday as we will have the details by then.

The irony of this is that today, April 1st (April Fool's Day) is the eighth anniversary of my mother's passing.

Genuinely Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Speaker and Author, "Where's my shoes?" My Father's Walk Through Alzheimer's (NOW AVAILABLE in Audiobook!) and soon-to-be-released, Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times

Before I Forget
Dedicated to The AD Patient's Perspective

From Cwadephill

DASN -- I really believe in the name of our organization -- Dementia Advocacy: that is what we are all about when we share ideas, speak out and speak up on behalf of dementia patients -- Support Network, that is what we do when we share knowledge, listen, write and share our experiences.

I tend to 'use' the DASN name if you will. When I can tell people about this growing membership it lends validity and credibility to my voiced concerns, no longer am I the lone opera singer saying Me, Me, Me! - I am a chorus of WE! I am PROUD to be a member, but that is what I am a member... my voice is not the voice of DASN, that, I think you will find in our web site, newsletter and press releases. Each state is progressing, I believe towards more of a supportive role directly from the persistence, complaining, whining <G> and sometimes out and out demands of many of our membership -- many still feel that those of us diagnosed more than two years ago and still talking with any sign of intelligence are a phenomenon, again the numbers of our membership deny them the luxury of using this excuse. At times in my enthusiasm to find an in-rode to garner us more support I become much like a bull in a China shop and am in need of that cattle prod on occasion because of my impatience. I truly appreciate the objective viewpoints shared by our membership (I find it very admirable that you have the confidence to share honestly, rather than just scoffing or ignoring a problem that you may perceive. It is much easier in chat to do this than in posts, because you can immediately clear up any misunderstanding caused by errant wording) A different perspective brings a new dimension that perhaps I was blindsided to, it makes me stop, think and reassess. This is proving to be a hard place to reside at times. Somewhat a state of limbo -- somewhere between TAB (temporarily able brained) and day care -- some days SO sure of my path my endeavors, my passions and enthusiasm, other days the corks that I've repaired this 'ol leaky boat with seem to give way all at once and I am flooded with self doubt, misgivings and apathy --- DASN has proven to be my lifeline and lifesaver - I thank you all, I applaud you all -- Our many strengths will make us a strong whole - Join and be part of the pioneering change in the future of Alzheimer's Disease - Join DASN

Editor's note: This group DASN is not just for those who have been diagnosed, it is also for caregivers, families, friends, coworkers, ANYONE who wishes to join in speaking out and speaking up for Dementia Patients.

Acceptance
by Datel123@aol.com

Accept this cruel monster in my life? Never!! I was the one who could always advise others but couldn't take the advice I so carefully researched for others. I have been an active participant on the AZ. Bulletin board for almost 4 years and I have told of my numerous years of dealing with AZ. I am known on the board for my brutal honesty because I refuse to take this unforgiving, conniving, faithless, perfidious, sneaky, disease that so slowly takes our loved ones from us and put any kind of happy spin on it. I desperately searched for guidance when my husband was first diagnosed in 1995.

In May of this year he will have been in a nursing home for 4 years. I know everything there is humanly to know about this disease. At least everything that has been accessible for me to learn. I have attended the local meetings, I have spoken at meetings, and I have attended more seminars than I want to remember, so I feel that I do know about this disease. I have faced this challenge head on and have been brought to my knees more times than I could ever count. But accept the fact that I was losing the other half of myself to something so insidious was too much to comprehend. I carried the guilt as Jesus did that cross. Somewhere in the very depths of my soul I somehow thought it had to be my fault. But we all know it wasn't.

Without anything to define the moment it had happened, Suddenly I understood all the things everyone had been trying to tell me for years. I had accepted the diagnosis of AZ. in my life. After years of counseling, giving advice to others, giving of myself to this disease until there was nothing left to define who I actually was. There was nothing of the woman I had been. I was a mere shell of a person. I don't even have the perception to know when it happened to mark this monumental occasion. I just know that for the first time in longer than I want to even think about I feel at peace with myself. I no longer blame myself. I have accepted the facts of his decline. I know that I can never go enough, do enough, to please but have finally come to terms with my limitations. I now know that if I am sick or can't go that it won't be remembered. I can go every day or I could go once a month and it is always in his mind months since I was there last. Even if it was the day before.

Because of reasons completely out of my control, the agony of trying to decide when to place him was fortunately taken out of my hands. My husband is a big man. Just a big gentle, kind, loving husband, father and grandfather who under normal circumstances would never hurt any living creature. But the complexities of this disease can turn the gentlest person into someone we don't know and actually learn to fear. I had no time to prepare myself, there was no time for agonizing, no time for giving in and just hiding, hoping it would go away. I could no longer control him. He had become a danger not only to me but also to himself.

God led me to this particular place and I know I could have never left him any place other than where he is. I will say this. When I left him there that day, I left a big part of myself and it is still there. The first year I remember nothing but tears and loss of control. Deep depression ran rampart. There were weeks when I couldn't get out of bed, take a bath, wash my hair, change clothes, even brushing my teeth was a supreme effort. I was totally incapacitated. There was nothing I could do to help myself. There was no one to help. That was made quite clear to me when he was diagnosed from both sides of the families. This including the daughter he raised from the age of 10. I could pull myself together long enough to take care of his needs, I even still did his clothes and only relinquished them to the home last year. But when I came home back to this bedroom I came. It became my sanctuary and actually still is. I could still take him out of the home then and we would go out, have a nice dinner and come here for a short time. That too became impossible when he progressively got worse and would refuse to go back. I would take him back then come home and walk through the house, his presence in every room and just lie down wherever and scream into a pillow and cry until I was completely exhausted. The second year I think I was in shock. I spent every waking moment there with him. If he couldn't be here I would be there with him. Such unhealthy patterns especially for him. I was setting a precedent that would come back to haunt me.

I had never been alone in my life and if I came in after dark there was this big ritual I went through. I looked under every bed, in every closet and checked every single window. I had always left about 8 lights on, floodlights all around the house. I never did that again. To me the worst thing had already happened to me. Nothing could ever hurt me more than this. One of the hardest things has been the decision-making. I had always managed the finances; in fact should the shoe have been on the other foot he would have been lost. But all decisions were now mine to be made and it was me who would suffer if I made the wrong ones. But I was taught that you never walk away from your responsibility and believe me I see this on a daily basis. There is no place in the world more heart breaking than a nursing home, even if it is a very nice place. They all beg to come home, but home is just a word to them. Just something that lingers when so much else is gone as a place of comfort.

The third year I got very involved in the activities of the home. I aggressively worked to keep the ceramics class open for a year because the funding had been lost. I decorated patient's rooms who had no one else to brighten up their small living space. I just recently made arrangements for all the tables in the dining room. But I allow myself to remember that he is in the best place I could ever place him and he lives in another world than the one I exist in. I don't go any less, I don't go any more. He knows I love him with all my heart and I will always be back. There is always that big smile when I walk into that door.

But with acceptance, I no longer agonize over every little thing, if I don't get around to something, it isn't the end of the world. Things aren't important to him but my time and presence is. I don't advocate it taking anyone this long to find that place of peace in their lives. I have been down much more than I have been up the past 4 years and there were times I thought I could do this no longer. Yes, I have thought about just packing my car and running as far away from this disease as I could, but the thoughts were fleeting and quickly forgotten. After all he has no one except me and I will always be there for him if God is willing until he no longer needs me at his side. I will always be there to sit and watch him sleep. Looking at that familiar face that just by looking appears nothing to be wrong. I will be there to hold his hand when he reaches out for me and I will still crawl up in bed with him and hold on to him for dear life every single time I go. There never will be a time when I won't be there. Until God decides he needs him more than me. Then and only then will I ever relinquish him.

Links of Interest

Alzheimer Society of Canada - Societe Alzheimer du Canada
http://www.alzheimer.ca/

NEW CLINICAL TRIAL: A Nutritional Brain Metabolic Enhancer for Alzheimer's Disease
http://www.alzheimers.org/trials/newtrials.html

From Datel123
Seniors-Site.com -- for adults 50+ (senior citizens) their children & caregivers
http://www.snowcrest.net/writers/alzh.html
A good AZ link on here

Email Bag

From megameg@mediaone.net

Thanks so much for the notice as I gave someone very much in need as a Caregiver, your web site several days ago & recommended she read all the past newsletters as they helped me so much cope with my husband's dementia. I don't think I could have made it without 'The Ribbon'. When days became too long and too much and after I had put him to bed at night I would come in a review all old newsletters & suggestions to see how I could be more efficient at the job of Caregiving. I lost my dearest friend and Husband, Colonel Gore Roberts, last November. Thank you so much for helping me care for him.
Mrs. Meg Roberts

From LauraW64

I only have time for a brief response, but thanks so much for sharing your thoughts. Your situation does sound similar to ours. We are finally at that place. Dad's caregiver just gave her two week notice - she was kind of a strange person and we didn't find out her true nature until after we hired her. It is actually good that she is leaving - we had already started to look for alternatives. Anyway, we are in the process of having Dad evaluated for going into an assisted living situation. He tested very poorly for living alone, but the evaluator said that his sociability and his personality made up for some of that, and I think we are going to try it out. I think he may need more of a structured environment, but he's not ready for a full blown Alzheimer's wing. He is only 66 and still pretty happy, and still knows where he is. But then again - maybe he doesn't? The evaluator asked him what his address is, what town he lives in and he didn't know anything. Maybe it's us who thinks he'd be most comfortable at home - he may be at the point where he realizes it isn't home but it doesn't matter. Well, we will soon see!

Thanks for your kind words and support. I'll keep you all posted...

Laura

Happy Easter
Hugs and Peace,
Karen and Jamie