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When asked how he was handling his increasing symptoms of Huntington's Disease, he was heard to reply...

"I find my disability a constant source of entertainment."
                                                                                 Brian Ridley

Contrary to what so much of the literature about this illness states, incontinence is not something that ‘happens’ in the last stage of Alzheimer’s Disease. 

It is not a process that can be clearly defined by biological dysfunction in an Alzheimer’s person the way it might be defined in someone with MS or a spinal injury. For an Alzheimer’s person, the ability to handle bathing, toileting, dressing are all inter-related with the loss of thinking process, word finding abilities, object recognition, and the ability to organize thoughts and physical movement. Every aspect of functioning is impacted by the global losses occurring in the brain. Once the process of deterioration begins, it will only end in one way and that is with the death of the brain. When the brain dies, we die.

By portending that incontinence is an occurrence that is off in the late stages of care, the literature not only ignores the realities caregivers face in the early stages of care but it leaves caregivers with:

1. A false sense of security about what they are actually dealing with.

2. A dearth of information on how to handle the developing problems.

3. A family member who needs a great deal of attention, attention needs that are only going to increase as the disease progresses.

For an Alzheimer’s family member, incontinence begins with missing the toilet and not getting in and out of clothing in time which is the direct result of deterioration of fine motor control, eye-hand co-ordination, organizational abilities and progresses to total inability to handle any part of the tasks, a direct result of the progressive brain damage. Once your person needs assistance in this area of functioning, incontinence has begun. What is most difficult for caregivers at this stage of care is that this disease robs our people of their ability to do the tasks required to maintain independence long before it robs them of the memory of having been able to do the tasks.

This is the time when you as the caregiver know things have begun to radically change. Your family member is no longer able to hide their problems. You are more and more aware of deficits, you probably have already been to the doctor and discovered your family member has probable Alzheimer’s Disease, or other dementia based illness. 

For the most part your family member is still able to function independently. Their social skills are still fairly intact, they can still find their way around town to familiar places, their verbal skills still allow them to participate within the family group where they feel most comfortable but contact with the rest of the world can be stressful unless someone is present to hold the remaining social threads together.  

As this stage draws to an end it becomes increasingly apparent that changes are happening and while family members scramble to deny those changes some things are too obvious to ignore.

Your husband/father doesn’t always get his fly zipped up. He returned from the restaurant’s men’s room with his shirt tail caught in the opening one night and was completely unaware of the situation. He sometimes puts his trousers on backwards and on one occasion he forgot to pull his underpants completely up before his trousers after using the toilet, and walked into the living room with the crotch of his pants hanging by his knees. He is taking an inordinate amount of time to dress himself but someone told you he'll lose the skill altogether if you do it for him.  He stopped going to his health club not because he's changing his routine.  It's because he not only can’t dress himself, he can’t find his locker anymore, he can’t remember the combination on the locker, he can’t make it work even if he remembers to take the combination with him. He stops going because the experience is too stressful which means he is more and more at home. You notice he has been missing the toilet when he urinates. He’s in the general area of target but off just enough so that the floor needs cleaning every time he goes. You can just imagine what he’s doing in public rest rooms. A couple of times he returned form the rest room and he had wet himself. You just hurried him out of the restaurant hoping no one noticed.

He takes a very long time to do anything. You realized he had spent over an hour cleaning the bathroom sink instead of taking a bath. He insisted he had taken the bath. You don’t know what to do. 

Your wife/mother has trouble managing her underclothes. Attaching her bra is difficult, not all the hooks meet. Panty hose is a real problem and sometimes the underpants are on over the panty hose. She has walked into the room with her slip or dress caught in her underpants after going to the bathroom and she seems unaware of this. She seems to have lost her interest in shopping for clothes. She refuses to try anything on in the stores anymore no matter how much a waste of time you insist it is for her to bring items home, only to return them later. The truth is they don’t get returned either. She tells you she doesn’t have time. She takes an inordinate amount of time in the bathroom and you find you sometimes have to go looking for her in a public place because she has taken so long. She is no longer able to follow complex directions and has to ask someone for help several times before finding the rest room. The signs on the doors are confusing if they don’t specifically say ladies or men’s room. On one occasion she accidentally walked into the men’s room.

You notice her bathing isn’t what it used to be, her appearance is looking unkempt, all of this is highly unusual. She was a fastidious person all her life. Her clothes are often mismatched and on one occasion, the dress was inside out. You will never forget the morning she walked into the room with her shoes on the wrong feet. It was a startling and humiliating experience for both of you. You want to reach out to her, but she insists she doesn’t need help. In fact she is angry that you ask. She has lots of excuses for her behaviors, but she isn’t as adept at carrying them off as she once was. Your last encounter ended in a shouting match and you feel, what can only be described as despair and foreboding. This is your mother, you don’t know what to do. 

As a spouse/adult child living with the afflicted family member:
You are gradually becoming aware of the changes already occurring in your family member, but the chances are you are not as aware of what is happening to you. You are becoming extremely protective of them, their feelings, and their fears, and you tend to separate yourself from yours which feel a great deal like panic. Panic is really uncomfortable, so you learn to stuff it. Without being fully aware, you have begun to fill in the missing gaps. Understanding their conversation, the only link you have to meet their needs, takes a great deal of energy you aren’t even aware of expending except you feel exhausted by the end of the day. 

You are relying more and more on familiar cues, such as voice tone and body language, and knowledge of their history to provide the glue that helps piece the fragments into meaningful phrases. You finish sentences for them, fill in words and explain what they need to know to strangers and friends, and family. In many ways you become so adept at it that you hardly realize you are doing it. Of course you know things are different, but you are so busy scrambling to keep life ‘normal’ that you don’t have time to think about what is happening. You have no way of understanding that the very same process that is interfering with their ability to communicate is also destroying the other abilities the brain has dominion over.

This is when the conspiracy of silence develops between you and your family member. You have entered into the conspiracy of keeping your family member’s life as normal as possible while shielding and protecting them. You don’t want others to know what is happening, you still think you can compensate, or help them compensate. You ‘put on the brave front’ and you join them in denial of the full extent of the developing problems and you want very much for things to go back to normal. That is the hope we all harbor. Only they don’t.

As the adult child, not living with the afflicted family member: 
You have an even more difficult time. You are constantly assured every thing is fine whenever you ask how ‘things’ are. The primary caregiver, whoever they might be, whether it is the well spouse or sibling or significant other, may be dropping hints about developing problems, but they aren’t being terribly specific and you aren’t ready to really look as the subliminal comments with much attention. Besides, you want to believe that everything is all right. After all, you have responsibilities of our own, family, jobs, life problems, but deep down you have a nagging feeling that things aren’t fine. When you visit everything seems all right, but there is something just a tad off center. Either your parent is making the supreme effort to rise to the occasion when you visit, which they are still quite able to do (for shorter and shorter periods of time) or, their primary caregiver is effectively running shot gun and is reluctant or unable to tell you how much things are changing. Keep in mind that because the primary caregiver is living the day-to-day experience, the subtle changes are not as noticeable as they are to you. And, people have a tendency to adapt without even being aware of how much they are adapting.

In either of the above situations, as much as you don’t want to see the signs, they are there and you know that things are going downhill.

There aren’t any easy solutions to these evolving situations and I can’t give you a prescription of behavior that will enable you to enter their world effortlessly. But you can’t do anything if you aren’t present and willing to try.  However, I can tell you what I did. 

I used my common sense, I hovered and I helped when it seemed prudent to do so.  I found myself using the same techniques I used as my children learned to walk, when they learned to use the potty, when they learned to ride a bike, when they had their first date. We all know how to hover.  As for "doing it for him thus making him lose those skills," all I can say to that is 'hogwash.'  They aren't going to relearn those skills and the energy it took Tom to do it on his own left him drained.  I figured it was better to step in and help and save his energy for other things.  

This same advice seems to surface in feeding as well.  Tell me, is it better to help feed them or let them slop food all over themselves, the table, the floor and end up with a totally cold and uneatable meal?  Would you do that to your child?

Most of our friends thought I was being excessively close. Some interpreted my actions as controlling. Family members blamed me for causing him to lose his abilities because ‘I did everything for him’. Had anyone spent more than a few minutes with him they’d have realized how little choice either of us had in those early days.

The key however, is that you must begin to establish your presence at this stage of care. Your presence in their lives may be the only constant they will have when they reach the last stages of care. And while so much is made of whether or not they will be able to recognize you by your proper placement in the family structure when the forgetfulness evolves into the inability to relate any memory, this is important to know:

• Whether or not they will be able to identify your place in their history as a daughter, son, wife or husband is really irrelevant to their increasing care needs or their essence as human beings.

• What is relevant is that they will retain the familiarity of the people who take care of them on a daily basis, and they will experience an element of trust and love in that familiarity.

• And surprisingly, for the caregiver, that trust can fill a lot of gaps in a relationship that may or may not have been fulfilling in it’s history. 

And while you have the job of getting past your own feelings of rejection, (if that is how you wish to view that ‘recognition’ thing), you still have to get into gear in spite of it. You have the major task of learning to see your person in a new light quickly if you are to move through this disease.  They will never be as they were again.  And it isn't going to get better. Caregiving, can at times, seem like a thankless job and there are times when it is a thankless job, but ultimately, it is up to you to find the sense in it.  Hygiene issues permeate every stage of this illness but as I've said in my article "It's Just Poop People," dealing with incontinence is 90% attitude and 10% tools, resources and education.  

I had the unique experience of watching my daughter-in-law guide my grandson through the steps of becoming toilet-trained shortly after Tom became bed-ridden. I marveled at the innate sense she brought to the process and I recognized the commonalties we both shared, she with my grandson and I with my husband.

"Do you have to go to the bathroom?" I heard her ask.

"No," was his reply, but 5 minutes later she discovered he had wet himself. He was playing when the question was asked and didn’t realize the ramifications of his response of ‘no.’ The next time she didn’t ask, she stated:

"It’s time to go to the bathroom Alex."

"I don’t want to." To which she responded, while taking his hand...

"But, it is time to try."

And in a firm but gentle way she led him to the bathroom, and helped him arrange his clothes. And sometimes, during this process of reinforcement, he hit the mark and sometimes he really didn’t need to go.  After a few days he learned the difference between "No," as in, "I don’t want to take the time now" and, "No, I really don’t have to go now."  It is in this way that he will learn all the concepts he needs to know to become an independent human being. 

In many ways my role for Tom was very similar to my daughter’s-in-law. We both functioned as a gentle reminder. However, our goals were very different and where Wendy’s were filled with expectations of Alex becoming independent, mine were filled with the understanding that Tom was moving backward in skill.

• A certain amount of running to the bathroom is inevitable at this stage of care. In the early part of this stage they will announce their needs on their own and proceed as they always have. As long as accidents aren’t happening life continues unimpeded.

• Once accidents start to happen your role changes and it becomes one of hovering and being there. Like it or not it means being there every time they use the facility, or darn near every time. This is going to take a big chunk of your time, but that is the way it is. You want them to keep as much independence as possible but you also don’t want to make your job harder than it is. Take it from one who knows, it is easier to help than it is to clean up the messes.

• Be there to assist. Once the assisting becomes a matter of dressing them yourselves, they are into the next stage of care, The Taking Over Stage.

• You set the temperature on the faucets, put paste on their toothbrush, flush the toilet when they forget, turn the lights on or off as needed and be aware that mirrors can be your enemy. By the end of this stage of care you might consider removing the mirror from the bathroom wall if it appears to be distracting to your person.

 About 5 years into Tom’s symptoms his brain started playing tricks on his vision. He was now past-pointing, in that he was seeing objects displaced further to the left or right than they actually were. The toilet was not excluded from this phenomena and he was seeing it several inches away from where it actually was. He was missing the toilet whenever he urinated and nearly missing the seat when he sat on it.

This was compounded by an increasing inability to distinguish objects, from their background. Our all gray bathroom with matching gray fixtures was one large gray blob to him. For all intents and purposes, he was now legally blind although his vision was technically fine. He could see but he couldn’t find anything.

• I bought a white toilet seat to replace the gray seat that was on the gray toilet. I started using toilet bowl pellets that turned water blue in order to give him something else to aim at. It worked for a while.

•  One day, while watching him trying to aim at the toilet and knowing he was no where near the target, and recognizing that I might as well get the mop, something came over me. I moved behind him and gently moved him into position. I checked over his shoulder and told him to go ahead. Well, what I actually said was, "Ready, Aim, Fire!"  He laughed so hard he almost missed it anyway. From that point on I tried to ‘assist’ when I was able and the time came when I reached down and helped maneuver his hands to hold ‘John Thomas’, (a.k.a. Tom’s penis), because he could no longer tell if it was in his hand or still in his pants.

• To compound these difficulties his brain sometimes registered things in opposition to how they were. For example, he might face the toilet but register it as being behind him. He was then in danger of sitting on the floor while facing the commode instead of turning around to sit on it. The mirror image he saw in some bathrooms also added greatly to this problem.

• After finding him on the floor a couple of times I realized, embarrassing or not, it was obvious something was going on and I wouldn’t know what it was until I observed it. I started hovering some more. I acted pre-occupied with other things near the door way and when I saw him begin to sit in the wrong direction I simply, quickly and gently turned him about. Once seated, I left the room. Another ritual that developed in our lives. Seating him also solved the following dilemma.

• He had also developed a left-field-of-vision void which further hampered his ability to accomplish simple tasks. Since he only saw half a room, half an image in the mirror, half a phone number, he also saw half a toilet. Nothing was where he thought it was. 

• It is also possible for family members to develop multiple images. The less confusion in the room the better.

Question: What do you do when your family member fails to wipe themselves after a bowel movement?

Answer: You do what you did when your child was learning how to wipe themselves. You step in and do it for them.

• Their brain is no longer sending the input that regulates their ability to recognize feel, touch etc. You may find half a roll of paper on the floor, the rest of it in the toilet. You may find paper stuck on their feet, in their pants, and on occasion a whole roll in the toilet. You may observe them taking toilet paper and not using it, but thinking they had.

Tom sometimes remarked about how useless he felt. I acknowledged how difficult it was for him and reassured him that I was there for him and that my helping him was something I wanted to do. One day, after watching him unroll half a roll of toilet paper on the floor, I reached over, wadded up a proper amount and handed it to him. It was easier than watching him fumble with the paper roll, or watching him try to deal with the shards he had managed to tear off.

It was also a big leap of faith the first time I had to help him wipe himself. I reached over behind him and just did it. And yes, he knew I did it. I pointed out the realities. Either I helped, or he would walk around with dirty underpants. He needed to know that I wasn’t repulsed by that level of help. I found that being matter-of-fact helped both of us deal with it. I asked him this question:

"Did you love your children less before they got out of diapers?" To which he answered: "Of course not." To which I replied: "Tom, this isn’t any different. If you’d been injured in a car accident chances are I’d be doing this anyway. It’s not a big deal." ]

It is one thing if you’ve had a close relationship with a spouse, it may seem like another if the privacy has been closely guarded as it is in some marriages and as it certainly is between parent and child.

Question: How does one start hovering around the bathroom with a parent?.

Answer: You just do it, but you do it carefully, with patience, and with resolve, because there isn’t any other way to do it.

I did not do a lot of explaining as I entered into the private areas of Tom’s life. The less talking I did, the less likely he was to feel that I was watching him or babying him. Because I had already established my presence in the more intimate situations in his life early in his deterioration, my increased participation happened almost unnoticed by him and that is the advantage of being a spouse. 

Through this period I assured him I wanted to help when he asked and demonstrated my desire to help by stepping in when needed. For the most part I just did what had to be done with as little fanfare as possible. In some ways it brought us closer than we might have been during those years and it set the precedent for my stepping in further as his skills continued to erode.

I repeat, being there from the beginning is very important to establishing the ease with which the caregiver can take over the responsibilities of care. But what does one do when caring for a parent or when the first stages of the illness are spent living by themselves and you aren’t there to establish any bond, or your bond was never close in the first place? If you have made the decision to be the primary caregiver then you start at that point and just do it. You will find your own way. And although the discomfort zone attached to attending to the intimate needs of a woman might be thought of as greater than those of attending to those of a man, the problem is those needs still have to be attended to. It may be emotionally more difficult, but it can still be done. The basic needs will have to be taken over by someone at some point in their care in any event.

 Basic Truths about this stage of care:

• If their clothing is going on wrong then their motor skills and ability to organize and process information is also impaired which has to affect their ability to toilet and bathe themselves.

• They are not going to ask you for help. It is up to you to step in and intervene. This is a particularly difficult step for adult children of a parent who has Alzheimer’s. It is the beginning of the changing of roles. It is a fearsome and difficult transition, but the sooner the primary caregiver steps in, the sooner acceptance happens.

• The Alzheimer’s person is not going to be able to describe what is happening to them so don’t rely on phone conversations or a few ambiguous questions for answers. You can only find out what is going on if you are there long enough to observe. Also, in the early stages, most Alzheimer’s people are fairly adept at covering up their deficits. If they have the added help of a spouse, the team can be quite formidable in terms of letting the adult children into what is really going on. You need to ask pertinent questions if you can’t be there to check on them in person. If Mom or Dad are having trouble dressing then they are probably having trouble managing bathing and the toilet. You can assume this.

• It is important to be persistent enough so that the well parent learns that you care and can be trusted. You can probably feel confident that things are still under control with both parents at this stage of care, and don’t feel you have to interfere with that relationship. Just know that things will worsen and now is the time to establish an honest open relationship with the well parent.

• Parents need the same assurance from you that you needed as a child from them. They need to know they are genuinely cared for. Some of them will set up the most outrageous tests for you to circumvent. All I can say, is that if you want to be there for them it takes work, and feeling rejected doesn’t help.

• This is time to accept that change in your life style is inevitable.

• This is the time for family conferences. It is time to define the roles of the various members and it is time to lay all the cards on the table in terms of who is going to become the primary caregiver and how the rest of the family is going to support that effort. Whether that support comes in the form of respite, work around the home, grocery shopping, financial support, emotional support, all of it is necessary to make the remaining years of the family member livable. That needs to be the family goal and each family member has to learn to appreciate what each other is doing in this effort.

Sounds easy doesn’t it.

Take it from one who knows:  This can be the start of hell or it can be a time for family units to draw together and work together perhaps for the first time in their experience as a family. It sometimes helps to use a family counselor to aid in defining these roles. Their impartiality can often make the difference between a plan that works and one that separates everyone.

Your function becomes one of mentoring, assisting, creative consultancy and being there during this phase of care.
In the beginning you act as a reminder in order to help maintain a sense of time and place in their world and when the cues no longer work you will find you have already adapted to the greater needs. If it helps allay fears, you will already be anticipating the next step in care by the time this one exceeds its limits. You will find yourself figuring out what to do and you will spend less time worrying over how you will feel doing it. If I have any advice, try to face each new challenge with love, acceptance, good humor and efficiency of energy. Sometimes the magic will work, sometimes it won’t. There are no guarantees in any phase of living life, this aspect of life is only another dimension of that continuum.

©2000

Please refer back to the Incontinence Menu at the top of this page for a complete list of subjects that deal with incontinence issues and altering the environment to aid in the care needs.