|
|
|
Looking Back |
|
|
|
My mother had Alzheimer�s. And now I know this for a fact. The autopsy told me so. It is Mother�s Day; the sun shines brightly; the church bells ring as families join together. Women wear corsages and knowing smiles. The world around me is aglow. But there is a pain in my heart. No, I haven�t been forgotten. A card has arrived from West Virginia and our oldest son is on his way to take me to brunch in celebration. Still the pain is there; for, I, too, remember. I remember my mother who died on the first of June last year. It is our first Mother�s Day celebration without her. In truth she was dying for years when she finally and fully left the world of the living as we know it, because she had Alzheimer�s. And now I know this for a fact. The autopsy told me so. I remember when the certainty hit me that I definitely wanted an autopsy to define the source of Mother�s illness. It was when she was hospitalized for a fractured hip in mid-February 1985 and arrangements were being made to surgically repair the break by the insertion of some pins. It�s a fairly commonplace operation, but I was face to face with the fact of my mother�s impending death, which could well be sooner than later. I felt somewhat foolish as I emphatically expressed my intention that should my that should my mother fail to survive her surgery, she was to have an autopsy by a neuro-pathologist and that the preliminary groundwork was to be laid. It was not until after I had talked with her doctors and the hospital that I was ready to deal with the immediate matter of my mother�s hip repair. The hip was repaired and she was to live for over two more years. Shortly thereafter, I made an appointment with my mother�s doctor in Warrenton. This time I had permission forms and procedural instructions, including the phone number of Dr. Herbert Manz at Georgetown University, who would do or arrange for the autopsy when the time came. I also had the name and phone number of the admitting physician. At some point earlier, Dr. Von Elton, my mother�s local physician, had given me the name of a local pathologist and I had reviewed information on other autopsy options. The Georgetown program best suited our needs, financially and logistically. Having researched and made the decision, I reviewed the steps with Dr. Von Elton. The step-by-step procedural outline was written and made part of my mother�s record at the nursing home. Also included were permission forms, names and phone numbers. The preparation was not without some emotional pain. I remember not being too successful in holding back the tears while awaiting the aforementioned appointment with my mother�s physician and then while speaking with the responsive social worker at my mother�s nursing home. Having the plans made and the procedure understood by everyone involved did much to "ease the burden" at the time of my mother�s death. A Personal Account The word came. I had seen my mother that morning and had known that she was not well. I�d made plans for a trip to Richmond the next morning and had returned home from an evening meeting about 10. I intended to call the nursing home to learn whether mother�s doctor had seen her and whether it was reasonable to go on with my plan for the next day. Damon�s face was ashen as he told me that my mother had died at 8:30 that evening. Details were shared. After a call to Warrenton, I was on my way. But not without first talking to Lin Noyes, director of the Family Respite Center who had been an on-going source of guidance and friendship. Upon arrival at the nursing home , I, who was generally adept at directing activities and taking charge, needed to do so. It was like fighting my way through a thick fog where the gravitational pull had increased threefold. First things first. I saw what remained of my mother. My husband reminds me of my first words upon entering her room: "Mother, you really are dead." The nurse, in whose care she had been, had been kind enough to remain past her shift�s end and we exchanged hugs and condolences. The mortician had been called and had plans to take my mother to Fauquier Hospital overnight. I had plans for her to directly to Georgetown Hospital. A conversation with Dr. Richard Wittenborn, ADRDA/NOVA�s Medical Advisor, confirmed for the driver that admission would be arranged at Georgetown and that my plans were reasonable. The driver had experienced arriving at hospitals in the past, only to have the body refused. This was a complication he did not wish to encounter in the middle of the night. Before any trip into the District, he�d have to secure paper work from the sheriff�s office, because my mother was being transported across state lines. Minor glitches aside, and there always are some, things went relatively smoothly, because I �d planned, communicated my plans with those involved, and had everything written out in detail. I �d been able to do it because of information and guidance from the ADRDA/NOVA Chapter and the involvement and cooperation of my mother�s primary care physician and the nursing home personnel. Why did I want an autopsy? I wanted an autopsy because my mother�s clinical picture was that Alzheimer�s and I wanted to know! My mother�s mother, grandmother, and two aunts had the same clinical picture. It may be that my mother�s Alzheimer�s was of the familial type and from that assumption, other logical implications can be drawn. When I spoke to Dr. Manz concerning the results, I don�t know precisely what I was afraid of hearing, but I was afraid. I learned that, yes, my mother was indeed suffering from Alzheimer�s--something she had suspected in the late 70�s after reading news articles describing the disease. I learned that she also had two other dementing conditions: complications from high blood pressure and strokes; and Lewy bodies disease. For me, it is better to know than not to know. Why would you want to have autopsy done on someone you love? A personal question which only you can answer. Like me, you may have a need to know. You may have a need to contribute to building a fund of accurate statistical and basic research data to benefit our fellow man. How and when one makes the decision to have an autopsy is also personal matter. If the decision is for doing an autopsy, planning before death ensures that it can be done with less difficulty and trauma than waiting until after death to begin making arrangements. If there should be a change of heart, the family can simply decide not to carry out the autopsy plans when death eventually comes. It is sad when the decision to seek an autopsy is made too late to be carried out. Looking back, I am glad I planned for my mother�s autopsy. And now I know. --------------- The Author, Ginnie Apperson, has been a volunteer with the Alzheimer�s Association, Northern Virginia Chapter for many years. She dedicates this article to the memory of her mother, Catherine Lloyd Miller.
Last updated: August 20, 1997
Please return to https://www.alz-nova.org or
© 1997 - 2001 Alzheimer's Association of the National Capital Area. All rights reserved. |