"The doctor tells me I have Alzheimer's." The truth of my husband's words shook our world.
This is my diary written for a time during the ten years of his spiral into another space. I began writing to vent my frustrations, sometimes anger. After a year and a half of writing, that anger had turned to acceptance. As our relationship turned from mutuality to one-sided dependency, my emotions changed as well. My husband's core personality remained intact throughout. He did however become more childlike, requiring me to reclaim my maternal instincts. When Dave was settled in the living room watching the news, I would go to my office to write. The events of the day often lead me to the memories of our earlier life. Often too, those memories would be a springboard for others--those of my childhood. I soon began to realize our experience could be of help and comfort to those who are close to a loved one with this strange disease.
Alzheimer Diary: A Wife's Journal was a Top 10 Novel on TheNextBigWriter.com.
I want our perfect life back, to return to the time we lived it together-a time when I would not be fighting my own demons as well as struggling with my husband's descent into mental chaos.
I want another New Year's Eve like our second one together, the jazz club in the Valley where Super Sax was playing. When they put down the first notes, my head exploded.
We danced and danced. I still remember my dress and shoes - apricot trimmed in brown, clingy and short, with tan shoes, mid-heel. Dave was so beautiful and very cool in his safari shirt. He knew who the players were, and, at forty-five, who he was. I was thirty-two.
I cannot catch a whiff of Mennen's Musk without remembering that night.
Twenty-five years later he lingered in the doorway of my office, on his face an expression I had never seen before. A little hurt, sad, bewildered.
With a questioning tilt to his head he said, "The doctor tells me I have Alzheimer's. You are supposed to call his office and talk to his nurse. Then come with me on my visits from now on."
Our world shifted. My world shifted.
If only I could re-wind the film.
Four years later I began this diary.
November 6, 2005
Find your own goddamn hat. Fifteen times a day I help you look for your hat. I want some time to look for my own hat.
You have no clue where you left your hat. You need it because your head is cold. Your head is always cold.
I hate that you mix up the dirties and the cleans in the dishwasher. And the dirties and the cleans in the wash.
A couple of days ago I insisted, because you complained again of the cold, that you put on your turtleneck instead of the short sleeve summer shirt. You never know the season now, or the weather.
After awhile, I came to your room to check on you. You were struggling to put your legs into the arms of the turtleneck after having taken off your sweat pants but still leaving on the short sleeve shirt.
Tonight I commented on how much your kitty loves you, Kitty Rings the one sitting in your lap and who sleeps in your bed-you could not find her until I touched her soft fur to your hand.
This is a damnable and fascinating thing, this Alzheimer's. Where are you disappearing to? I do not like to see your awareness fading because of a bunch of gooey stuff clogging up your neurons-plaques and tangles the doctors call it, but do not know which is the real culprit.
Where is my David now?
For a week or so you complained of this hurt on your chest. Finally, last night, you retrieved the memory that you had fallen in the post office, tripped on a package and fell flat. Usually our people in this small Sam's Valley take such good care of you.
Yesterday when we went to Rainey's, our corner store, the clerks, the owners, came over to say hello to you, C an I help? Are you finding what you need? Then they see me. "Oh, you have brought a helper."
I was not needed. Others in their kindness are taking care of you too. Such a relief to know, it frees me from worry when you are gone.
What I need is to learn how to deal with my own emotions.
Is more patience required? No, more compassion.
December 1, 2005
Trapped again, and cranky. Damn back pain, which comes at these times of extreme stress. Why does my body insist on making a hard time worse? Where is my survival instinct?
Last night the snow was so beautiful, reminded me of the days when we reveled in it. When it was more than an obstruction.
Dave drove up our long driveway before lunch to get the paper, as he usually does. He was gone for so long I got a little panicky. Had he decided to go off to Rainey's to get ice cream? Did he slide off the driveway into a ditch?
I was also annoyed-when will he get back so I can be in my life?
Will I have to tramp up the road in the boots that pull on my sore back? Will I have to drive the truck up? I am not a truck person.
Maybe my friend Beth is right...a support group. Maybe our son Patrick is right...an occasional caregiver.
Dave is not the only one being enveloped in a cocoon, one of forgetting; I am drawing one around me also, a cocoon of isolation. I do not want intruders, strangers, nor is there anywhere I want to go. I sometimes worry I may leave off loving him, that he may become an obligation rather than my beloved husband.
I know if we ever did spend a week in New York again, staying at the Plaza, drinking dry martinis in the Oak Bar, eating spring lamb and fresh asparagus in the Oak Room-I would be the only one really there, the only one of us who would be weaving in the memories of when we visited that magic place before.
Darn it all!
December 3, 2005
The constant war of the door. The collies Mazie and Meggi sleep near my side of the bed, Cindy the spaniel as close to Dave as she can get. He always leaves during the night to sleep in the guest room; apparently I snore, though he claims to be unsure of why he goes.
When he gets up to go to the bathroom, around five or so, he comes over and closes my door no matter how many times I have asked him not to. Within no time, Cindy scratches to get out. I was asleep, now awake and pissed. I sleep only in few hour segments anyway, but want it to be my rhythm, not an imposed one. Last week I piled boxes against the door, wedging it open. An eyesore, but it worked just fine.
He just cannot remember Cindy will want to come out to be with him. And what is worse, from my standpoint of relishing being upset with him to release my anger, is that he closes the door so I can sleep and not hear him awake and roaming. He is being considerate and I am a shrew.
This morning was surreal.
Last night, precious grand-baby Simone came to sleep over with me. She is now a 'big girl' of four and loves her Grammy time. But at two a.m. she awoke stressed, wanting her mommy, wanting to go home. Kathy soon came for her. I went back to bed and fell asleep for an hour, awake another hour, asleep, another awake, etc.
Then, as daylight began, I sensed the quiet hand moving the door shut. I bolted, told him, "No, leave it open." Back and forth went the door; his knowing the difference between open and closed momentarily blotted out by my irritation.
What I wanted to do was scream, "Open is open, closed is closed."
December 4, 2005
Today was a good day. Last night, after writing, I was wrestling with the guilt of focusing more on my own emotions than on him. It is not what I intended when I started writing but being my diary, of course it is in large part about that: my pain, my irritation, my inconveniences.
Though because he is the one losing himself, I might ask, almost did, "What right have I to be pissed at him for something he cannot help?" And I would answer, if I had asked, "It's not about right but about being human." I am half of the equation of our new life.
This morning, he closed the door again. Lucky for us both, Cindy snored on, did not scratch to get out. Plus, I had a good night's sleep and dove into housework, which I usually hate, but today it helped me regain control. And the sun was shining.
And at lunch he wanted to give me his part of the paper, over and over. All who know him tell how generous and considerate he is, always offering the chair, the jacket, the bowl of peanuts. That I do not want the door closed, or the heat too high is something he would surely note if he were able.
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|Publish Date||Nov 17, 2010|