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I’d like to take a few minutes to set the tone of this web page and introduce myself to you. I am one of you. My husband, Tom, was diagnosed with Alzheimer’s Disease shortly after our marriage in 1986 and I faced the same uncertainties and fears that you will now be facing with someone in your life. Unlike so many others who offer advice to those of you living this experience, I am someone who has been there. Tom already had problems when we married but in all honesty we hoped his problems were the result of a closed head injury he had suffered some years earlier and not the progressive dementia it turned out to be. He faced a total of 14 years after symptoms became apparent. I faced 10 years of that battle with Tom, a battle I chronicled in my book, "He Used To Be Somebody, A Journey Into Alzheimer's Disease Through the Eyes of a Caregiver." which was published one month before he died. I realize as I write this, that our last chapter together has yet to be written. Tom died of Alzheimer’s Disease, at the age of 67, in our home, October 1995. It was a peaceful death. He died without pain, surrounded by those who cared about him with his favorite music playing. If he knew nothing else, when he died, he knew he was loved. All in all, as I reflect on those last weeks, we should all be so blessed when our time comes. People are amazed, if not aghast that I married Tom knowing the potential of what we might be facing. All I can say is that with half a brain he was still head and shoulders above most. He was quite simply the love of my life. We were both pragmatic people by nature and we understood there were no guarantees of a long life together with or without Alzheimer’s. We decided to live what was left of our life together with as much panache as we could summon up. At least that was the plan. If only the symptoms associated with this disease were the sum total of what I had to deal with. Negative attitudes about this disease, attitudes towards my husband who had the misfortune to get this disease, and attitudes towards me, because I took on the role of his caregiver, all contributed to making my job harder than it had to be. People simply don’t value caregiving for someone who loses their thinking process. We caregivers tend to be characterized as victims and our people tend to be characterized as burdensome because of this bias. I found that demoralizing. I watched this type of discrimination heaped on the mentally ill, the developmentally disabled and of late, those with Aids, over my years as a counselor. Fortunately some of those negative attitudes changed, particularly those towards the developmentally disabled, a group also marked for institutionalization as the recommended form of care in the early days of my career. But what I experienced when my husband was diagnosed with Alzheimer's, rivaled anything I witnessed in the 25 years I worked with profoundly handicapped people. As his caregiver I personally felt assaulted by a public inattentive to the sanctity of my role as his caregiver and his basic human rights to expect the same considerations we all demand for ourselves. Frankly speaking, I tired of reading and hearing nothing but the doom and gloom associated with this disease when what I needed was a way to salvage something positive out of the experience, something we could both cling to and some practical ways to deal with the life we were handed.
I faced years of uncertainty and fear and there were times when I felt trapped, under-appreciated, and frantic about our life. Like most caregivers facing dementia care, I found I was particularly alone on this journey. It was primarily through an ability to draw on my creativity, my sense of Tom, and a willingness to see his disease as a process with puzzles that needed to be solved in his day-to-day care instead of the drudgery I was led to expect, that propelled me through his illness. I refused to be treated like a victim. In the end, I have to say that the journey was not without value. I managed to find a sense of peace and connection with Tom in spite of his profound deficits, and I learned to treasure the moments we were able to share. I also learned more than I ever cared to about bodily functions and how to navigate those needs without letting it reflect on either my husband or myself. This web page evolved out of that experience with Tom and the experiences of the many caregivers who agreed to share their stories with you. We are from different walks of life, from different parts of the country, with our own unique challenges but we all have one thing in common, we were all victims of the bias that follows Alzheimer's where ever it goes. It's particular form of discrimination runs largely unchecked and I realized, after Tom died, that I needed to challenge that bias if I was to live with myself. The bias seeps into every nook and cranny of the caregiving experience and it interferes with how we caregivers approach our jobs. I want this web site to offer something positive to those just starting out, who have no notion of their personal strength or resourcefulness and who need to be given the opportunity to at least look at the whole picture before the hopelessness is too deeply ingrained. It is my intention that this page will help dispel some of the myths that surround this illness, those that are associated with incontinence care and particularly those issues that deal with the dying. The point to all of this is that as awful as Alzheimer's is, it is just another way to die. Grief affects us all equally and the fear of the unknown still lives within those with Alzheimer's as it does with those facing ALS and Cancer. While there are those who need to emphasize the cognitive loss as a way to enhance the pointlessness of this particular death, all that does is feed into the concept that our people are already dead before their time. There is no hierarchy of what is a worst death, We are all going to die someday and while all of us would prefer to expire in our sleep, after a long productive life, with all our loose ends tied in a nice little bundle, and able to wipe our own bottoms until that last breath escapes, the reality is that few of us will have the luxury of that sort of death. The majority of us will die in a combination of pain, sickness, incapacity and dementia. What matters isn't how we die, what matters is how we are treated, regarded, considered, and cared for during the process. In spite of the fact that our people lose the capacity to engage their world as this illness takes over their lives, they are still human beings deserving of every consideration we would automatically afford that child with leukemia, that wife with ALS, that father with cancer. Tom's needs in the end weren't any different from anyone else's needs. His presence was felt as surely those last few days as was my father's who died of cancer and the goodbye's we all said to him weren't any less meaningful. And that my friends is what this web page is about.
I hope that caregivers, professionals and family members alike will begin to look objectively at the bias that surrounds this disease and begin to question why the resulting attitudes have any place in this long-term care challenge. The problem for me is that I’ve learned too much about this disease to be able to walk away from it without doing something to reach out to those who follow me down this particular path. My hope is that this effort will contribute to the process of altering existing attitudes about this disease and a new found pride in a clean, and happy bottom. I wish you all strength, creativity, humor, and support when you need it. Beverly Bigtree Murphy Caregiver ©2000
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