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"Is
life a boon? W. S. Gilbert, The Yeoman of the Guard |
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A gentleman in the support group I've led in my house since my husband died of Alzheimer's, remarked on the recent passing of his wife of 35 years: "I don't know. I think this is the worst possible death anyone can have. To die and not even know where you are..." Everyone in the room commiserated. I wasn't surprised because I'd heard similar comments from people in Washington at the annual visit with congress to ask for more money for research and programs. Even then I felt taken aback not because Alzheimer's isn't horrible, but because the point was being missed. The premise for the comment was based on the loss of the ability of our people to engage the world around them as if the inability to recognize family members and their locations or wipe their own bottoms somehow makes this death worse than others. I spent 25 years working with profoundly handicapped, seeing vast numbers of them through incontinence and mobility problems and I watched numbers die of cancer, ALS, MS, and Parkinson's and of late Aids, and I've seen family and friends lose loved ones in ways that are indescribable. I have a hard time attaching a hierarchy to which is a 'worse way to die.' I couldn't help but think of my father who died of cancer in pain, in the wee hours of the morning alone and in the sterile unfeeling environment of a hospital room. He was only 59 and it was a horrible last 4 months in all of our lives but mostly his. He still had his ability to communicate with all of us, however, because he was who he was, and because we were who we were, and because we were all victimized in part by the social mores of the 60's, when the concept of death wasn't even spoken of let alone delved into, little was said by anyone. I still have regrets over the lost opportunities to say the actual words: "I love You," to him, even though I know in my heart of hearts that he knew he was loved. Unfortunately those mores are still too prevalent in our culture and just as unfortunate, there are no guarantees that even if a person can express their fears, their joys, their hopes or their regrets that they will. In light of this revelation it seems all the more hideous to me that we caregivers are encouraged to abandon our people with Alzheimer's because they can't express their fears, their joys, their hopes or their regrets and worst yet to banish them to the realm of the non living because of that loss.
Bob and Angie I then thought of Bob and Angie, the two friends I made after my book was published, who were dealing with ALS (Lou Gehrig's Disease) with their spouses, June and Rich. For those of you who don't know much about this disease, it too is a progressive neurological disease that slowly robs people of all ability to function. They lose their muscle control, become incontinent, unable to walk, move, swallow, or talk. Many are lucky to be able to move a finger or blink in the end which becomes their last means of communication. In the end their bodily functions cease, their breathing is affected, their bowels, kidneys and liver cease to work and they die. They do however, maintain their ability to think, reason, express feelings, desires and fears. Having been through the last stage of my husband's Alzheimer's, the physical end for him wasn't any different than it was for June and Rich, the spouses of my two friends. All three were bed-ridden, incontinent, immobile, and vulnerable for years. June and Rich both had had feeding tubes for years because the loss of their ability to swallow happened at a stage in their illness when death was a long way off. They also still had a viable role in the family and could participate in the decisions about their care when the issue of intubation arose. Like Tom, both of these people were cared for in their homes until they died. This is not to imply that Bob and Aggie weren't under pressure to institutionalize their spouses. They were, but it is also of interest to note that the 'well-meaning helpers' in their lives backed off, not because Bob and Angie were anymore adamant about keeping their spouses home than was I, but because the family member still knew what was going on. When's Bob's wife June reached the end of her journey, her elimination system ceased to work. This meant that any food he gave her would not be processed and would only backup and impact her system. Hospice informed him that he must stop feeding her. Her death would follow in a week or two, the result from starvation and dehydration. There was nothing that could be done to change that outcome. Hospice took a great deal of time discussing this with him, explaining why her death was imminent and why continuing to feed her would cause her more discomfort and pain than she deserved. They explained that her body would shut down in an orderly fashion, she would not experience much discomfort, she would slip into a coma and pass, which is what happened. Once he understood the ramifications of what was happening Bob was then faced with the dilemma of explaining it to his wife, June, and then face the task of helping her accept that she was dying. Even though both knew her disease was terminal the final pronouncement of the inevitable threw them back into the stages of mourning. With the help of hospice, June was able to accept the inevitable. The family gathered, the goodbyes were said, the rituals of death were observed and Bob's wife experienced what many refer to as a 'good death.' She died without pain in the loving embrace of her family. The irony is that Tom faced exactly the same process in his last few days of life. He lost the ability to swallow, a feeding tube was out of the question for all the right reasons, his system had stopped processing any food or liquid intake and he ultimately died of starvation and dehydration. However, I only had to deal with my grieving while making him as comfortable as possible. The family gathered, the goodbyes were said, the rituals of death were observed and Tom experienced as good a death as one can hope for. He died without pain, in his own bed, surrounded by the things that mattered in his life. Thank God I didn't have to face what Bob faced with June and thank God for small favors. We are a culture that has experienced the loss of the importance of sharing the death ritual with our people. No matter what course death takes, whether it is a child or an elderly parent, sudden death or prolonged care, we have been carefully taught to flee in it's wake. We have become expert at conjuring reasons to avoid contact with the dying but the most base of those reasons, in my opinion, is this one... "He doesn't even know who I am."
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