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AN ALZHEIMER'S LOVE STORY
By Robert John McAllister
AuthorHouseCopyright © 2012 Robert John McAllister, M.D., Ph.D.
All right reserved.
Chapter OnePART 1 (DEC 06—MAY 07)
We're going to Laura's for Christmas. Jane began wrapping packages for Casey and Tara this morning. She enjoyed the task in past years and did it easily and well. Today she wrapped two packages and then didn't remember what was in them. She was devastated.
She was completely disheartened by the incident. After lunch she decided to go to bed. She appeared exhausted. I pulled the shades and tucked her in. she said she wanted to get the wrapping perfect because "this might be the last time I'll be able to do it." She may be right. In desperation she asks, "What are we going to do?" I tell her we'll do the best we can. What else can I say? I offered to sit in the bedroom and read as I sometimes do but she declined. We both cried a little and I left to do other things.
Jane is anxious to see Laura and the girls. she talked about it for weeks and worries about having enough time there. We will go on Saturday, 12/23. Jane proposed an earlier day but Laura and I agreed if we went too early, Jane might not make it through Christmas. Laura and I know the need for time limits based on previous experience.
on arrival we expected to have a quiet evening at home with Laura, since the girls were with their father. But Laura had made a reservation for dinner and included her friend, Frank. Dinner went well. We all talked freely and Jane was responsive and cordial.
on Sunday (Christmas Eve) Jane and I went to noon Mass at Our Lady of Mount Carmel in Tenafly, NJ. It was a blessed experience for us both, a sacred time, reverent, and a fine homily highlighting the place of women in the introduction of the Redeemer. We had lunch at the Tenafly diner—Belgian waffles. We returned to the church at 4p.m. for the Christmas service. Laura and Frank and the two children were at their church.
When Jane confronts things these days, she can't manage the whole scene at one time. She described eating the waffle at the diner and how she focused not just on each quarter section but on each individual little square, each with its ration of syrup. For her, life is like the waffle. Even the simplest situation needs to be approached in small digestible parts, and in doing so she is likely to miss the larger picture.
As we went through the ritual of gifts Christmas morning, I could not enter into a festive mood. The children's enthusiasm, Laura and Frank's affection for each other, the Christmas music in the background seemed to intrude into the sanctum of our lives. I watched Jane focus on one portion of "the waffle" or another, trying to digest what she could. I knew much of it was distasteful and would "stick in her craw:" the focus on monetary value, the stores things came from, the lack of personal warmth.
Saving bows and boxes is usually not supervised by a guest. It is an irresistible temptation for Jane. It was a piece of the scene which Jane could neither assimilate nor navigate. Laura knitted Jane a beautiful scarf which pleased her very much, but her later comment was, "I would rather have had some time with Laura just to talk."
Laura spent most of the day in the kitchen preparing an elaborate dinner. It was not a good visiting time. The girls were involved with their electronic gadgets. Jane and I were just "hanging out" or more accurately "hanging on."
By bedtime I suggested to Jane we go home on Wednesday instead of Thursday. She opposed the idea but the next morning she volunteered that Wednesday would be fine. We were all relieved when the visit was over.
Will we go again? No doubt, although I do not look forward to another visit. they are too stressful for Jane. She feels Laura should show more awareness of her illness. She wants to talk about it with Laura "before it's too late." There was never an opportunity.
Jane wants to hold onto those who are dear and feel the strength and solace of their love, now not next week or next year. She cannot depend on next week or next year. At Laura's house, I found Jane in the basement "visiting" the dolls of Laura's childhood. She remembered the origin and history of the more significant dolls. It reminded me of how gentle and loving and tender hearted she truly is. Are her children able to see that?
Jane hides behind harsh statements at times and anger from years ago sullies current comments often enough. But she expresses her love openly, verbally, easily and often. She and I voice our love for one another frequently. Now she needs to say it and hear it even oftener. Do the children doubt her sincerity when they hear it said so often?
Jane sometimes voices concern I won't always be able to care for her, but more importantly that I won't always want to care for her. She doubts the permanence of my love when she is despondent. That's not surprising considering the adults and peers of her childhood and young adult years. How can she believe in my lasting love when she never had the experience before? And how can I convince her before the fact?
Something happened the other day that makes me uncomfortable. When we came home from Borders, Jane had an art pencil she said she bought there. she looked for the receipt but couldn't find it. There was no bag. The charge never showed up on our visa bill. I don't know what to think. Jane is an honest woman; but sometimes I think she acts from a part of her brain which I have never known before. Is it just a more primitive part that escapes the control of judgment from time to time? So where will this go? These thoughts come to me in the disturbing hours of wakeful dark.
(Email to Laura 12/30/06)
I have the impression you have very little appreciation for how seriously the Alzheimer's is affecting your mother's thinking and her interacting with others. When she is with someone for a few hours she may seem to be her regular self. She can talk and joke and laugh and enter into the conversation quite well. It is deceiving. She has a hard time tracking what others say, and even if she understands the words the meaning can escape her. When several things are going on, such as the unwrapping of presents, she cannot follow the whole thing but picks up bits and pieces of it all. She focuses on a small piece and loses the rest.
She says things she doesn't remember saying or she repeats what she just said. She forgets what others say or doesn't remember it correctly. When she is aware of this, it is embarrassing and depressing for her. She lives in constant awareness that her memory, mental acuity, and ability to interact with others are becoming increasingly impaired.
The time for her to "make some changes" is past. Changes are occurring which cannot be stopped and they limit her intellectually and socially. But emotionally they bring anger and sadness and fear, which provoke words and actions that are impulsive and without sense even to her. Understanding, patience, and love are the only real gifts any of us can give her now.
I'm not sure why I wrote all this. It makes me sad to reflect on this lovely, kind, gentle woman who is gradually losing her ability to demonstrate all these qualities that have made her the star in my life. If everyone else loses the ability to recognize who she still is because they never knew who she really was, she will always be my star.
Yesterday I wrote a lengthy e-mail to Laura trying to describe more clearly her mother's condition and gently chiding her for her attitude. Jane read it and approved it. Jane is filled with concerns about Laura. She is convinced we will never hear from Laura again. I suggested we go to Savage Mills Antique mall and look around. She tried to be cheerful, but I fear the venture was a disappointment to her. Laura was still in her thoughts.
We planned to attend the 4:30p.m. Saturday mass. When we got home, she was tired. I suggested she lie down and I would go to mass alone. She readily agreed and remarked about giving up on the church and wondering whether God hears her. I woke her about two hours later and brought her Communion. It was a tender loving moment and I thought God does hear her prayers.
Jane becomes utterly exhausted in stressful situations. Sometimes she is not rested after her usual 10 to 12 hours of sleep. I must acknowledge these periods of sleep provide us both some surcease, although I feel a bit guilty for thinking so. She objects to sleeping because, "I want to be with you and it's lonely when I sleep."
Laura is still on her mind. "We will never hear from her again." When we came back after lunch, there was a message from Laura—pleasant, routine things mentioned. I encouraged Jane to call her back. It went well and was obviously a relief to her.
Jane often hears music when she lies down to nap and at bedtime. She is annoyed when I say I don't hear it. She often asks, "How can this happen? how can I hear music when there isn't any there?" She is irritated when I can't explain it. I say, "It must be due to the medicine you're taking." The music has gradually become less annoying.
This illness is a roller-coaster ride for both of us. It's frightening for her because she doesn't want to be on the ride. I don't like the ride but I want to stay on it to the finish. I don't pray for God to make Jane well. I know God could and God knows I want her to be well. But I will not stake my faith on a miracle and at this point it would be a miracle. I do believe God hears me when I pray I will always be here and able to take care of Jane as long as she is alive. I believe Jane is special in God's eyes, and God wants me to care for her through this awful time.
It is difficult to see Jane struggle with things she did easily a few years ago and now are too much for her. There are unfinished projects around the house, minor ones I am happy she rarely notices ... a picture she intends to frame, an article she intends to repair, a book she began to read, a shirt that needs a button, a blouse she is going to iron. Does she not notice them or does she just not mention them because she feels so defeated?
The other day she said she felt like she was viewing things outside the car in segments and not taking in the whole scene. That is such an apt description of her current observation and attention responses. I need to be aware of her limited perspective and not flood her with several ideas at the same time, which I tend to do.
We recently looked at book covers because my book will soon be ready for publication. She became interested in a particular cover. As often happens, focus turns to obsession easily and she became irritated that I was not giving her comments the respect and attention they deserved. Reason leaves the scene and emotion rules. Anger, sadness, fear, isolation, disappointment, guilt, abandonment ... all expressed in turn, and I know not how to respond. it is frustrating and discouraging.
Yesterday was a good day. We spent two and a half hours at the Candlelight restaurant over dinner. Jane was as bright, responsive and wonderful as she has always been. We talked of many things. She philosophized about how people respond to someone who mentions a serious illness. Some say "not to worry, everything will be all right." Others respond with "a pat on the back and feigned cheerful words." I asked what response would help her. She replied, "It is important to acknowledge the sadness of the other person and let that person know it is something you recognize."
I asked if it helps her when I say, "I know you are feeling badly and I wish I could do something to help you." She said it is helpful but sometimes is not enough. Some physical response is needed at times, and I don't always provide it. Touch, physical contact makes her feel less alone. I must remember that and do it more freely.
The evening went wonderfully. We talked and laughed and reminisced. It was like old times. We talked about her attention to small segments of a situation. She remembered few Christmas events at Laura's because she focused on what was happening to the bows and boxes.
Is it a natural response of an Alzheimer's patient to focus on a part of the environment so it remains clear and understandable and in the process the main event is missed or assimilated in a jumbled and distorted way? Does Jane try to compensate for her memory loss by an intense focus on one piece of what she is seeing or hearing? Her poor memory encourages the narrow intensity and the rest is lost.
It was a wonderful evening, overshadowed by the knowledge that this too may be a fleeting moment.
She slept until 11a.m. today. After breakfast she decided to go back to bed. As I was tucking her in, she said the book cover remains on her mind and we need to settle it. I carefully reminded her of our discussion yesterday and said we had agreed on it. She recalled it as I mentioned the details. She seemed reassured.
Jane's fatigue must be discouraging for her. I don't think it is the result of depression primarily, because it comes on suddenly and seems directly related to stress. It is difficult to define "stress" because different things may be involved. We have been going over my book galley. Jane read five chapters on Saturday and completed the last two chapters yesterday. She points out word errors and raises excellent questions about content. She is usually correct and I make the changes. I wonder if the mental exertion of attending so carefully to something for so long is exhausting for her.
For two weeks I have marveled at how well she is doing and how easy and enjoyable it is to be with her. At other times I feel I am pulling her along. I must take care not to pull too soon or too quickly or too hard or too obviously. I have to learn her pace of walking, of talking, of thinking, of living. It is hard to remember this when she is doing well.
It was a good day. it was a bad day. It was an every day. How can days be measured when life is separated from the realities we used to know? When times are good, the old reality is closer but never certain. When times are bad, that reality is a memory and one Jane will remember less and less. I want my old Jane back.
The last few days had a sharper edge, an easy loss of patience over an insignificant exchange with me or someone else. We had dinner here with two other couples last evening. Jane had difficulty keeping up with the conversation. Today she said her hearing aids did not work well last night. I said maybe she doesn't hear things as easily when she is tense. She acknowledged the possibility and accepted the explanation.
I woke Jane a little before ten. She was in good spirits. After breakfast I suggested more sleep which she readily accepted. She slept until one this afternoon when I woke her. After lunch she started packing to go to Rehoboth beach tomorrow. After two hours trying to pack she became frustrated and unable to distinguish one thing from another. She became increasingly frantic. I suggested resting for awhile. She agreed. We talked for a few minutes and then she slept. I sat and read for a long time before I left the room.
Before going to sleep she said she was confused and uncertain about herself yesterday when we were at mass at the monastery. She thought of stepping out in an area between the choir stalls and "dying right there." She looked at the granite tile where she would die. "Everything would be over for me, and you would survive well." I wept and told her how much I needed her. She said her head was full of worries. "Getting ready for the trip brings back so many memories." She gets lost in memories and has a difficult time getting back. Before sleeping she said, "Do you hear the organ music?"
Today she said, "you shouldn't worry. Things will be good sometimes and they will be bad sometimes, and it will go on quite some time before it gets terrible. Then I won't know and won't care but it will be hard on you. I think I've come to terms with it." Has either of us come to terms with this slow deterioration of her magnificent brain?
My book was submitted to the printer yesterday. It is a relief to have it out of the way. We are both pleased with the cover and the format.
The days at the beach went well last week. We went to breakfast at the Boardwalk Plaza the morning of the 24th, Jane's birthday. They would not seat us at a window table because staff planned to work there. Jane was not happy with the arrangement nor was I. We agreed to leave. As we left she went to the front desk complaining rather loudly and strongly. She became angry at me for not being more sympathetic with her position and therefore "not agreeing with her."
Excerpted from AN ALZHEIMER'S LOVE STORY by Robert John McAllister Copyright © 2012 by Robert John McAllister, M.D., Ph.D.. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
An Alzheimer's love story....................xiii
PART 1 (DEC 06—MAY 07)....................1
PART 2 (JUN 07—NOV 07)....................20
PART 3 (DEC 07—MAY 08)....................35
PART 4 (JUN 08—NOV 08)....................57
PART 5 (DEC 08—MAY 09)....................88
PART 6 (JUNE 09—NOV 09)....................121
PART 7 (DEC 09—MAY 10)....................139
PART 8 (JUN 10—NOV 10)....................168
PART 9 (DEC 10—MAY 11)....................205
PART 10 (JUN 11—NOV 11)....................244
PART 11 (DEC 11—MAY 12)....................299