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Settling for contentment over a cure

by Carol Bradley Bursack, Editor-in-Chief

Most caregivers would do nearly anything to cure their sick loved one. However, we know that we are not going to cure our father of Alzheimer's disease, nor our mother of Parkinson's disease. There are many illnesses that attack our elders that can't be cured. Aging in general is eventually fatal. Therefore, after all medical options for cure have been tried, we often have to accept the fact that the person will not get better. What then? For me, as a caregiver, the answer was to try to help my loved ones feel as content with their quality of life as possible.

As a "career" family caregiver with two decades and seven elders as practice, I did learn quite a bit. One of the things I learned was that there was a great deal I could not control. No matter how well I cared for my uncle after his stroke, he had another, bigger stroke. He became more disabled. No matter how careful I was to help my mother-in-law understand her surroundings, I couldn't help the progression of her illness. She still had dementia. No matter how hard I tried with my own parents, I couldn't make their different dementias disappear. There was nowhere to go with this but the route of acceptance.

My dad's situation was a particular challenge. He had brain surgery that was meant to correct the problem of fluid buildup behind scar tissue left in his brain by a World War II injury. The type of surgery performed is generally successful, but for some reason Dad was one for whom it backfired.

Dad went into surgery lucid and himself. He came out demented and paranoid. Dad lived ten long years with varying degrees of dementia, depending on the day, but it was always there and often frightening and frustrating.

I drew from my heart a type of "therapy," now recognized as validation therapy. It works. I was scolded by psychiatrists at the time, because what I was doing - validating my dad's thoughts and feelings at any given moment and taking myself into his world rather than demanding he come back to mine - was considered just plain wrong. Five years into Dad's care, I was complimented by another psychiatrist. He asked me where I learned how to do this with Dad -get into his world. I just looked at him and said, "He's my Dad. I had no other choice. I wasn't going torture him by demanding of him something that he obviously couldn't do." That psychiatrist shook my hand and smiled.

For Dad, delusions were a big part of his problem. Paranoia could also take over. There were occasional, astounding moments of clarity where he "came back" on his own, but they were only brief moments. His life became one of play acting on my part. I do believe he understood, on some level, that we were play acting, In fact I know he did. One day, out of nowhere, he looked me in the eyes and said, "I think I make up all of these problems just to have something to do." He then slid back into his demented state.

To keep Dad content, I had become his office manager. He still thought he was working an important job. I took dictation, sent him letters from dignitaries and then opened them with him at the nursing home. When he was a big band director (in his head) I bought him a director's wand so he could direct the big band music we played on his CD player. When he thought he was on the local zoo board, he told me they wanted an elephant for the zoo. I wrote him a letter telling him that his contacts were looking for one, and signed it with our mayor's name.

Some people thought what I did was demeaning. To me, it gave him dignity. He didn't have to live feeling he was useless and sick. He could be relatively content - on days when this approach worked - thinking he was contributing to society, something that had always been important to him.

There were many days, of course, when my best efforts failed. Many days where paranoia ruled and frantic efforts to help Dad gain some serenity were just that - frantic efforts. We had to bite the bullet and comfort him the best we could. When I had to leave after my daily visit, and Dad was in such a spot, I cried all the way home. There were certain caregivers at the nursing home who understood Dad's situation well, and when these special people were on duty, I was gratified.

I couldn't be there all day every day. Nor did I always succeed in leaving him content. However, since cure wasn't an option for Dad, I had to do my best. Contentment was my goal. When he was content, I could feel more serene.

Caregiving is tough, my friends. Some days we feel like failures. We can't cure. We can't do away with aging and disease. All we can do is our best, and often that means trying to find out what brings the most contentment to our loved ones on any particular day, and then doing what we can to provide that.

Sometimes we succeed. Celebrate that. Sometimes we fail. Don't beat yourself up. You did your best. Contentment for the caregiver is important too. We won't always feel content with our efforts, but we need to be self-forgiving and know we are doing our human best.