Alzheimer's disease is a disease that lasts and lasts and lasts. The HBO specials a few years ago did an excellent job of explaining the atrocities of this slow death, but I feel it failed to exemplify the torturous length of this horrendous descent. Experts estimate that most victims of the disease suffer from 2 to 20 years. With those who are diagnosed later in life, 2 years melts away fairly quickly, just as the victim melts from independent living to complete dependence on others. With early onset, when the victim is only in his/her forties or fifties, life can continue for 20 years - good days then bad, full cognition then little, with it all ending up in total dependence, unless another illness steps in to end life first.
The person with Alzheimer's disease may be in the most advantageous position as the disease progresses as s/he remembers less and less and becomes unaware of the travesty of the disease. The caregiver, close family, and friends, however, are subjected to a wretched view of a loved one vanishing in an excruciatingly prolonged existence. I am referring to these "survivors" as I describe the possible stages of grief. This is not grief after someone has passed but rather the enduring grief of losing a loved one day after another day after a week, month, year. This is Alzheimer's disease. (Refer to my article "Enduring the Grief of Alzheimer's Disease" for additional background information).
Having lost my mother when she was age 79 and my sister from early onset at age 67, I will relate my grieving stages to them. With the "sped-up" death of my mom, I moved from denial - she is just getting old - to anger because I couldn't change the Alzheimer's course - to admitting there was a problem with no cure. It was then that I realized that my blaming and pretending Mama was fine was not going to work to her benefit or to mine. Although I do not believe I ever accepted the inevitability of the permanence of her death, I worked to remove my mind from the regrets of "would'a", "could'a", "should'a" and focused on how I could best help her and my sisters now. I was helpless in curing Mama as no cure existed then (1990) or now, but I could assuage my feelings of guilt by confronting the present and making the best of every breath that was left in her life.
Five months before her death, I spent a week caring for her. I bathed her and changed her diapers, cleaned her house and cooked her meals, fed her with small bites and tiny sips, and loved her as she was as a recognized that she could not return to her former, vital self. On the last day of my stay, my mom, with faltering steps, walked down the hall. When she saw me she paused, did her favorite little hop that included a handclap and then she exclaimed, "You're here!" I live on that gesture and those words as I continually work to erase the emaciated withdrawal to death that came. Ah, it is the little things.
Forgiveness was never a part of my emotions. Mama did not choose Alzheimer's; it chose her. My children and husband, sisters, nieces and nephews, and extended family did what they could to help as they felt competent and capable. Acceptance has been hard. Why would this happen to my mom? Why is there no cure? Why can't organs and bodily functions all "run out" at once? That would make sense to me.
With my sister, Carole, I guess I was more prepared for Alzheimer's disease. Hindsight helped me recognize that by the time she was 53, major forgetfulness was intruding. Lost purses and keys, missed directions and wrong turns, shadowy eyes and misunderstanding peeked in on her with increasing frequency. And while accepting it was hard, admitting it came easy. There were just too many arrows pointing toward Alzheimer's disease.
Because the wound of loss of my mom was still fresh (even after several years), I could never be angry with Carole. She was too sweet. I did feel anger toward rude service personnel, gawkers at restaurants, pushy bicyclists when we walked our trails. She was helpless to defend herself and so I became the one to help defend her. I blamed others for their inexcusable behavior and unforgiving attitudes, but Carole remained innocent.
The guilt that sometimes snuck in came more from living 500 miles away than from my behavior or hers. This became even truer after confusion and travel problems meant she could no longer come to see me on her own. I regret that I could not change the Alzheimer's course, but I know that Carole led me to compassion and understanding for her and for others who suffer this relentless disease that I could have know in no other way. Pain and loss are excellent teachers.
Grief is strange as it comes and goes transferring from one form to another. One day I feel good and whole; the next day I wonder how different things might have been. Grief is most often mentioned with dying with no clear path or direct way to act and react to return to a positive image of life. Grief with Alzheimer's disease is perhaps more painful in that it goes on and on while the loved one is still alive, if "alive" can truly describe what the final throes of the disease really are.
A death after the prolonged Alzheimer's road is almost a relief. Not relief that the loved one is gone, but that the agonizing voyage has come to an end. I miss my mom and sister every day but I would never wish another day of that tragic end for either of them.
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