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 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 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.

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.

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.