To Diaper Or Not To Diaper? Is That a Question?: Alzheimer's Disease and Incontinence
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 adults 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 isnt:
The questions are:
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?
Over 4,000,000 men and women are diagnosed with Alzheimers 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.
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 Gehrigs 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.
Alzheimers 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 Alzheimers 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 isnt 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.
Alzheimers 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 Alzheimers 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 didnt. 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 doesnt make it impossible. Christopher Reeve had no more choice in his care needs then did Tom and like Mr. Reeve, Toms 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 isnt 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.
Its Just Poop People! It Isnt Toxic Waste.
Bodily functions are a part of life. Once your person is having more than occasional accidents they have entered the 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 babys 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 childs 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 .
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 Caregivers 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 Alzheimers 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 doesnt 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 mothers 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 ones 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:
Making the Bathroom Alzheimers-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 Alzheimers Disease:
A colleague of mine, a director of one of the most well regarded adult-day programs Ive seen, once said, that when one of her participants has a catastrophic reaction, 90% of the time its 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, Toms 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 cant give them a greater gift.
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 Alzheimers Disease Through the Eyes of a Caregiver by Beverly Bigtree Murphy
This is the book I wrote about Toms and my life with Alzheimers. 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 Toms 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.
Available from ElderCare Online www.ec-online.net ©2000 Prism Innovations, Inc.