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The Taking-Charge Stage of Incontinence Care © (Stages 6b-6e on the Reisberg FAST Scale) |
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In the depths of winter I finally learned that within me there lies an invincible summer ....Camus I will never forget the first time I went in the store to buy a bag of adult diapers. There I stood, staring at a wall, a veritable sea of products. I was so upset and embarrassed that I was completely unable to integrate the directions on the packages or make any kind of decision as to what to buy. The 'sweet young thing,' who was stacking the shelves just looked at me blankly when I asked her if she knew anything about 'those things.' It took three visits, the second one being little more than a quick waft through the section with barely a glance at the shelves, before I made a purchase and it took weeks before I figured out a system of products that worked best for us. Books were no help. The only thing they talked about was 'poddy training.' I already knew about 'poddy training,' having raised two sons, and we were long past that option anyway. Our lives, for lack of a better description. were consumed with toilet needs. I hadn't discovered the Alzheimer's Association yet, and if I had I doubt if I could have formed the questions I needed answers to anyway. Come to think of it, I didn't even know what the questions were. This whole area of discussion is not exactly something that rolls off the tongue easily, in fact its the best way I know to empty a room. The sad thing is that while everyone was busy finding reasons for me to institutionalize Tom as this phase of care became a reality, they missed helping me find ways to process two very important milestones, both of which surfaced when Tom’s incontinence escalated. I was immobilized emotionally until I came to terms with these realities. I. The acceptance of the reality that Tom had no active part in the choices anymore. Tom was not going to be able to give me permission to take charge of this situation. As an example, diapering him was something I had to come to terms with. It was my reticence, my fears, my attitude that I had to face, before I could deal with his. Our relationship had shifted from one of sharing all the decisions to being the one who had to make them all, by myself. Tom had been my mentor, my confidant and my best friend and all I had left was the memory of that. And I really mourned that loss. I still mourn that loss and Tom died in 1995. I was not prepared to take on all the responsibility for him so early in our life together (we had only been married a few short years at that time) and that responsibility encompassed all kinds of mixed feelings as his incontinence needs and needs in general increased. I not only had to deal with my feelings but I had responsibility for his, a person less and less able to express himself. How could I dare to enter his private space without demeaning him or degrading him? That is the major dilemma for all of us facing the care of a family member with Alzheimer’s. Roles have to change and it isn’t an easy change to make and who welcomes change anyway? I know I didn’t. II. The recognition that Tom was going to die as a result of this illness. I remember the sense of panic and fear I felt when I realized Tom’s bathroom problems were beyond anything I could change. Visions flooded my mind, visions of wheelchairs, hospital beds, unnamed bags of diapers stacked along the wall. I suddenly understood what the words "terminal" and "progressive" meant. How was I going to care for him? What was I going to do? How could I do it? I couldn’t even afford the luxury of a good depression because I was still trying to protect Tom from the reality of how much he had already lost, knowing the vague idea of what I knew was ahead, was nothing like the reality I would probably face. Telling me he belonged in a nursing home when what I needed was how to approach him with diapers wasn’t a help to me. I wasn’t ready to put Tom in a nursing home. What I needed was some practical information so that I could approach the problems and decide for myself whether or not it was time to put him in a nursing home. I needed to be told it could be done before I could even begin to figure out if I could do it. Intellectually I knew there were products and equipment available to handle the problem and I also knew there were ways to assist those who were in wheel chairs and bed-ridden. The bodily functions continue and must be dealt with, that was basic in the rehabilitation of many of my clients during my 25 year stint as a Certified Rehabilitation Counselor. But, the clinical bomb shelter that surrounded me during my years as a therapist had served to protect me from the ‘real’ realities of what my clients faced. You see, like most professional helpers, I went to my home after work, while my clients went home alone to theirs. A wheelchair was just a mode of transportation to me, a structure of wheels, levers, and brakes with adjustable seats that needed to be navigated through largely inaccessible space. I never really let myself think about what that chair meant to someone who had to use the toilet. Oh I ordered the rehabilitation that taught how to transfer to toilets and tubs. I purchased equipment to move them in and out of those chairs. I lobbied for accessibility in buildings and on public transportation for wheelchair-bound citizens, but I never really stopped to think about the feelings, the fears, or the loss those people experienced. But, I would find out. It took me a while to realize that I was in mourning over Tom’s inability to toilet himself without help anymore. And the mourning continued... I mourned every loss of function he experienced every step downwards, every inch of the way until he died. And each of those ‘little deaths’ were mourned independently, encompassing all the stages of grief Elisabeth Kubler-Ross writes so eloquently about. I found that the faster I recognized my feelings as grief when confronted with one of those little deaths, the faster I was able to deal with it and move on to the next challenge and until he died there was always a next challenge. And contrary to expectations of those around me, my mourning was not finished when he died. I had been so busy trying to keep abreast of the constant changes that I hadn’t time to place myself in the picture. The 'little deaths' were only a prelude to the final event. In the end, I made the decision, and once the decision was made, 'it,' like every other task I had to take on as Tom's illness progressed, simply became something else I did for him. In the end, I think I waited too long. I put both of us through unnecessary stress. Nothing is ever as awful as you imagine. For Tom, it was almost a relief. For me, well, structure was back in my life. Never underestimate the value of structure. As a culture, incontinence is probably the very last thing any of us want to face. Our sense of modesty and privacy outreach just about everything else in our lives and incontinence is the manifestation of true horror for most of us. However, if you are faced with it you have only four ways of dealing with it. As I see it, you can face it with anger, disgust, benign complacency, or love. I made the conscious effort to choose love. All things considered, I'd rather be in... but that's life.
Incontinence
care during this stage
For one thing, it can’t be ignored. For another, it occurs with the onset of very difficult behaviors, a deterioration in the ability to understand the needs, and gross perceptual problems. However, most caregivers find that once that first diaper has been changed, the first shower given, the first mess on the floor cleaned, that doing ‘it’ isn’t nearly as awful as the fear of doing ‘it’. As this entire web page attests, I didn’t think I could do ‘it’ either. My mother did not raise me to change adult diapers and this was the furthest thing from my mind as something I would have to do. But I not only accomplished the logistics of dealing with the tasks, and I repeat, they are only tasks, I actually grew to feel a sense of accomplishment in keeping Tom’s bottom free of abrasions, bed sores and all the other ramifications of poor hygiene, the same way I concerned myself about those things when I became a new mother.
Incontinence care takes 80% attitude, and 20% understanding of the disease, organization, tools, and help, but once you separate the emotional component from the physical tasks, it really isn’t that big a deal. Loosing sleep as a result of Tom’s nocturnal pacing was a lot harder to deal with. In fact I expect that sleep deprivation of the caregiver, resulting from the largely uncontrollable behaviors that develop in the mid-stage of care, account for more nursing home placements than does incontinence. Incontinence may add to the problems, but by itself, incontinence care is just another skill learned. One thing is certain, there is little left that will test my ability to cope with adversity than dealing with my husband’s dying of Alzheimer’s Disease did, and his incontinence care was a larger part of the drama than I was led to believe. It was also the one aspect of his care that I dreaded the most. I admit this because it carried so much significance and emotional weight with it, and it was so blown out of proportion in relation to the whole picture of his care. I was forced to ask myself some questions, not the least of which was:
The answer to that question is that Tom’s incontinence brought with it a set of issues very much apart from the actual tasks of cleaning and changing him. First: A huge taboo exists about this subject in our American culture, which probably relates to all that early strenuous potty training we endured as children. To become the first on the block, who’s child was potty trained was nothing less than a badge of honor for our parents and proof positive that they were good at their job. Bodily functions were then delegated to the ‘closet,’ so to speak, and spoken of as little as possible from then on. As a result, we, as a culture, are faced with a built in reluctance to acknowledge or deal with the incontinence problems old age, illness and dementia present to us and that culture also includes our professional community. Second: The glaring difference for families facing dementia is that their people lose the cognitive skills that allow them to integrate what needs to be done for them and they no longer have the ability to reason it out, co-operate, or give the caregiver permission to help. They are also assailed with visual and other sensory misconceptions that place them in a reality that is very different from ours. This translates into denial on their part, behaviors that are difficult to manage and increasing stress on the caregiver. Since most early and mid stage caregivers have no means by which to understand the way in which this disease renders our family members helpless, they also feel helpless. And with family and friends, and a large portion of the professional community still lacking education about how this disease alters behaviors, our people are often delegated to being thought of as ‘Something to take care of,’ instead of ‘Someone to be cared about,’ and this attitude leaps to Alpine heights once incontinence becomes a major issue. Caregivers of people facing other diseases are treated differently because no one wants to demean the value of someone who can still think, and therefore feel, no matter how physically debilitated their illness makes them. Political correctness mandates that. Believe me, Christopher Reeve and his wife received a very pragmatic discussion of just exactly what his hygiene care needs would be as soon as his rehabilitation began. For the record, Alzheimer’s people feel the same abhorrence Mr. Reeve must have felt, even though they can't articulate it as well. Too much of the good advice on incontinence care with Alzheimer’s Disease concentrates on avoidance response and avoids the obvious: Apparently no one wants the responsibility of telling a caregiver that Incontinence Products are going to be necessary at some point in care with this disease. By skirting the issue they deprive the caregiver of the dignity of dealing with the problem in an open and realistic way and they not only telegraph their own discomfort with this subject to the caregiver, they send a not so subtle message that any discussion is taboo. And so the caregiver takes the cue and stuffs their questions. Face it, if the subject is so socially taboo perhaps its because it reflects on the worth of everyone involved. And if the worth of a dementia patient is dependent upon their ability to toilet themselves, unfortunately, the caregiver’s worth is along for the ride. What caregivers usually get in response to any question about incontinence is that it is time to institutionalize their person, and that does little more than encourage the premature placement of our people in institutions. Or, they get Band-Aid solutions that really don’t address the problems, such as limiting liquids at night. I have a whole list of these offerings to discuss later in this book. The advice does little more than prey on the natural fears and reluctance we all have about crossing this barrier-to-care. It certainly doesn’t give the caregiver any sense of potential success in dealing with the problems. Adult Diapers, a.k.a., Incontinence Pads, a.k.a., Those Things, were actually easier to deal with than constantly doing the race to the bathroom bit, which was far more demeaning and much more traumatic on both of us than adult diapers ever were. Making the decision to diaper Tom actually gave us back a semblance of a normal life again. For one thing, we could move further than 10 seconds away from a toilet. For another, Tom was under less stress to ‘perform’ what was clearly an impossible task any longer. All Tom would know is that he didn’t have to worry so much any more, he was dry and clean, there was another piece of clothing in the dressing drill and most of all, he was still loved. And with the appropriate use of incontinence products, the furniture, carpeting and the bedding were safe. It was vitally important to Tom and me that our home remained esthetically pleasing. Our home never took on the aura of a hospital, even with the inclusion of a hospital bed during his last stage of the illness. Our life style actually improved when I started using incontinence products because they brought structure back in our lives. * Never underestimate the value of structure. * We could now take those drives again, and eat out again, and go for walks in the park again without fear of the unthinkable. In retrospect, I waited too long to purchase that first bag of pads. I convinced myself that his dignity was at stake when my fear of losing my own was the real reason. Tom didn’t have a choice in what was happening to him any more than someone like Christopher Reeve has a choice. After wading through my personal hang ups, and batting away public opinion, Tom’s transition to adult diapers was shorter than I expected and far less traumatic than making him give up driving, which is another book altogether. All I can say is that we can thank our stars that companies like, Kimberly Clark and Procter & Gamble, Johnson & Johnson, and others, have taken the time to develop the products we need. When you think life is bad, just remember it could be worse. We might be living in a time when disposables weren’t even available. Surprisingly, the hardest part of this phase of care is in the beginning of this stage. You have passed the point of being able to hover and it is that time when you must not only enter their space and you now do things for them, instead of just with them. It is that time when the change over occurs from sharing the decisions to making them. You are in a very real sense taking charge of their lives as well as your own. And you must do this while they are still trying to hold on to their own autonomy. If the caregiver is beset with feelings of loss and fear compounded by the very erratic behaviors this phase of care is known for it is for good reason. Life is pretty bizarre. To say the very least, it is a time of great upheaval and confusion for all the parties involved in this situation and the caregiver will probably get little practical help from anyone, unless they have already networked with other caregivers and they have a family that is willing to go that extra mile. The family member is past the point of being able to take care of any part of their needs without some help. As the primary caregiver you know they can’t make the decisions anymore but, you still are reluctant to recognize that and you hear yourself saying things like:
Like it or not, you cannot expect them to give you permission to do these things. Any reluctance you feel about taking steps to insure their safety, their health, their care is in your hands. This is the moment of truth when you take responsibility for them. What finally made me realize that incontinence products were the only act in town was the combative nature of Tom’s latest developments, that and the fact that trying all those helpful hints I got from available material on incontinence, just didn't work. He seemed to interpret my getting him in and out of his clothes and dragging him to the bathroom 50 times a day as manhandling. And you what, it was. Who could blame him for being upset. By the time I got him into the bathroom he had forgotten why we were there and was only able to focus on having his clothing blipped up and down. I couldn’t get him to sit on the toilet long enough to do what had to be done because he was so angry by the time I got him seated he forgot he had to go. Consequently, he would stand up, yell to leave the room and then let go in his clothing just as I began to pull his pants back up. It was hideous. Since these care needs aren’t going to go away, no matter who does them, and since incontinence and the behaviors associated with incontinence care seem to be a major barrier lets consider what this disease actually presents to caregivers and explore some new ways to look at these barriers. And if the caregiver feels an onslaught from some of the service providers in their lives, the pressure they feel from family and friends and uninvited strangers also increases, especially as this stage of care begins to manifest itself. Caregivers are trying to sort out what they can handle and what they get from those around them are these kinds of comments.... "How long do you intend to do this?" "Isn’t it time to put your family member in nursing home care?" "She doesn’t know who you are, why are you doing this?" etc., etc., etc. And for the record, the assumption that our people belong in nursing home care with the onset of incontinence isn’t based in any statistical reality in the first place. It is one of those ‘truism-clichés’ that everyone accepts as fact but which no one ever really examines. In actuality incontinence care generally goes on long before the nursing home decision is made because the problems begin in the early process of the illness, and family members are still cognizant enough to be a continuing part of family life, even though it is at a diminished level. While the initial reaction of caregivers to incontinence care is always one of reluctance, it is my experience, both as a caregiver and in working with caregivers, that, most get past that barrier rather quickly.
It is time to challenge the myth that having strangers do the tasks, somehow makes the transitions more palatable to Alzheimer’s family members. That attitude denies our people their feelings, their sense of privacy, their sense of themselves and asserts that those things no long matter to them. That is a wrong message to send to a public that already sees the caregiving of those with this disease as a ‘burden,’ a ‘needless sacrifice,’ as ‘co-dependent behavior,’ simply because our people have the distinction of losing their brain function, something that results from a disease process over which they have no control. For information on Incontinence products and how to use them, click here... ©2000 |
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