Dealing With Dementia

Jun 24, 2001

The Bottom Line There are no firm answers which cover this situation. Everyone facing this question will have to act according to the reality of their circumstances.

I had often read of instances where circumstances forced an adult to return home to look after an aging parent who could no longer look after themselves. I wish that I'd paid more attention earlier. My younger brother and myself found ourselves in a situation whereby we had to look after both parents as they drifted into senility and passed away.

My parents had planned well for retirement, and with my Mom delving into stocks and Real Estate, they were actually making more money than in the years when they actively worked at a job. They both lived the lives of exemplary Senior Citizens who were socially and politically active.

This began drawing to a close shortly after my Dad's 80th birthday, when he suffered the first of several minor strokes. It had little apparent effect on him apart from a bothersome short-term memory loss. This in itself was cause for concern. But a mere 6 months after this, it was evident that there was something wrong with Mom as well. She was having trouble remembering words and forming sentences. As our family gathered for their 50th Wedding Anniversary, it was plain to everyone that there was something very, very wrong. Among other things, she dropped her sisters-in-law off at a local shopping center, then forgot where she had left them.

I agonized over the situation for a few weeks, and then made the only decision I thought possible. It was time to return home. I quit my job, gave up my place, took a great step into the unknown and moved to Arizona. For the first year that I was there, I could do little but observe the situation, as my Dad was talking very little by then and my Mom was in complete denial. I realized that we were entering into a legal and medical minefield with no charts.

Mom resisted every notion that something might be wrong with her and refused to see a doctor. I gradually maneuvered both of them into letting me assume some of their responsibilities. With the aid of their lawyer, we drew up a durable power of attorney, and he managed to convince both of them that this was the wisest thing to do. This raised the first of many thorny issues. A good argument could have been made that they were not legally competent when they signed it. Fortunately, they went along with this, as I would have been utterly helpless to deal with what followed without it.

After about a year, things came to a head. Mom had just had another go around with the bank about her account balance. We had just about persuaded her to see a neurologist when she had another mood swing and refused to go. I was pretty uncertain about reversing the parent-child relationship up to this point. But by now it was time to act. I sucked in a deep breath and confronted her with some pretty unpleasant facts. The ensuing scene was pretty ugly, and she was adamant that she wasn't seeing any doctor. We had already made an appointment, and the doctor's staff just said to get her there one way or another. I resigned myself to the fact that we might have to abduct her and throw her into the car for a drive to Tucson. Fortunately, it never came to that. She went willingly after all.

The diagnosis was soon to arrive. She had Alzheimer's disease, and a CAT scan confirmed it. The family was in shock, but at least we knew what we were dealing with. It was still several months before I could legally intervene in their finances. Mom insisted that she could still do the books. I persuaded my Dad to put my name on the checking account, and I managed to get the proper forms from the brokerage houses she dealt with. Neither the banks or the brokerage firms recognize a power of attorney in and of itself. The party involved has to sign off on a proprietary form issued by the firm in question. Perhaps the biggest mistake I made was in being reluctant to confront my own mother. To anyone in a similar situation, my first piece of advice would be to get over it, and fast. Because you ain't seen nothing yet.

As their afflictions progressed, my brother found himself in 24 hour a day lockdown with the two of them. I worked at a full time job to take the strain off of their finances. I relieved him during the evening hours and the care of my parents eventually became a 24/7 chore for the two of us. With advancing senility came incontinence, with both of them refusing to wear sanitary protection without a fight. Our housekeeping eventually broke down under the strain of cleaning up after their personal messes and constantly watching them to ensure that they didn't hurt themselves or burn the house down.

Neither my brother nor myself could have coped with this situation alone. If both of us hadn't been able to put our lives on hold and do this, the state would have eventually intervened, confiscating their assets to pay for it. Little did we know that when we started this that the ordeal was going to last for over 6 years. That knowledge might have made me hesitate from the outset. But according to our upbringing, we felt that we had no other choice. Everything that we were we owed to these two remarkable people. They had stuck by us for better or worse, and we felt that we could do nothing less.

With both of them ultimately unable to communicate, it became very difficult to assess their medical needs. Shortly after I took over the family books, I discovered that Mom's health insurance had lapsed because she had forgotten to renew it. I was advised by the attorney that because she was now diagnosed with Alzheimer's she was uninsurable. My argument that the disease was responsible for this situation went nowhere. Until the end, we had to rely on Medicare to pick up part of the tab. Somehow or another, I managed to successfully shepherd both of them through emergency gall bladder surgery without it bankrupting us. To say that I lived in abject fear of being poverty-stricken and stuck with two invalided parents would be an understatement.

Fortunately, we had some very good help along the way. As a disabled veteran, my Dad was entitled to a nurses aid to come in 5 days a week for an hour each day. She was the one who spotted the fact that my Dad had something very wrong. He wouldn't complain of any pain, but she knew something was amiss. That same night, he had emergency surgery to remove a gall stone the size of a pecan. He survived that surgery (at age 84) and went on to live another two years.

Time eventually took it's toll on both of them, and by the point when the end rolled around, both were utterly helpless. Dad could no longer walk, but he still kept trying. We had to restrain him and watch him constantly so that he wouldn't hurt himself. Mom took to stalking the house at weird hours of the night, so my brother and I had to take turns sleeping in order to keep an eye on things.

My Dad passed away with relative ease and little discomfort. But it was heartbreaking to witness the total loss of dignity that both of them experienced. By the time the end came, neither of them had any left whatsoever. By another small miracle, we had been referred to the local Hospice organization just in the nick of time. Caseworkers and nurses aids were on hand to assist us and keep an eye on the care-givers as well. The fact that we were on the Hospice roll cut through an awful lot of red tape when the end came around. When my Dad died, the Coroner did not need to be involved, nor was there any need for an autopsy and a few other formalities. They contacted the mortuary and helped me with arrangements.

My Mom qualified for Hospice assistance as well, and we got her enrolled on it a mere 3 days after my Dad passed away. She had lost considerable weight and was having a difficult time walking. Unfortunately, she would regain her strength from time to time and start wandering when we least expected it. I put her to bed one night and fell asleep on the couch. I woke up around 3AM to find her sitting in the living room wearing my glasses. That meant she had been hovering over me while I was asleep, which gave me the willies just to think about it.

This prolonged ordeal had taken a severe toll on my brother and myself as well. Both of us had taken to drinking too much and we were suffering from sleep disturbance from the irregular hours. About 3 months before the end, the Hospice caseworker declared a care giver breakdown. They placed Mom in a local facility for 2 weeks and told us to take a break. It was indicative of how I was unaware of how my own condition was going downhill. I did tell the caseworker that I thought I was hallucinating from the prolonged stress. I started seeing a blur of movement out of the corner of my eye which I knew wasn't there. After receiving reassurances that this was stress-related, I still thought I was about to lose my mind.

The end for Mom came only 7 months after my Dad passed away. It was as peaceful and gentle as I could have hoped for. She simply went to sleep and gradually stopped breathing. I was alone with her when the end came, and curiously enough I felt no grief. Just massive relief that this was over and that they had both found some peace. About 5 minutes after she was gone, my chest and shoulder muscles suddenly relaxed. I had been bound up with tension for so long that I hadn't even noticed the discomfort.

This all came to a head over 2 years ago. I'm still trying to sort out legal matters, and my sleep patterns have still not settled down. I still suffer from an occaisional nightmare which wakes me up yelling. But I have no regrets that we chose to do what we did for our parents. In spite of the physical and mental toll it extracted from us, I'm convinced we did the right thing.

I've often been asked by others facing a similar situation about what they might expect. The best I can say is that when dealing with an affliction like Alzheimer's, expect the unexpected. No two patients react the same way to this disease. The stereotype of a patient curling up in the prenatal position doesn't always hold true. Quite the contrary. Be prepared for a barrage of well-intentioned but poor advice from family and friends who have no concept of what it is like to actually deal with this on a day by day basis. Everybody seems to be an expert except for the poor soul who has to deal with it. There is no script, and the care-giver is forced to wing it on the basis of what is happening at the moment. You learn to think on your feet and improvise.

Keep in mind the local Hospice organizations. These people are of immense help, and they are trained to deal with the dying on a daily basis. I have no pat answers for those faced with making a similar decision. Just let your conscience be your guide. I'm satisfied that I can live with mine.

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