Photo of my father, Robert Stone, taken August 23, 2006
Today is August 23, Day 23 of the Ultimate Blog Challenge and my father’s birthday. It is also the date when I first saw my father with dementia. His death followed four months later, on December 26, 2006. Here is part of a piece I wrote after his death, as I reflected back on his mental decline:
Dementia: it is an alien word. An intruder, outside me and my family. It is so distant I do not need to even worry about it. It might exist somewhere in the world and threaten others, but it will not set foot upon my path.
So I thought, secure in the way that inexperience, ignorance, and denial protect us. So comfortable was I in the sturdiness of the family genes, I did not lose any moments, waking or sleeping, worrying about cognitive decline. Perhaps this is why, when the decline was going on, I did not notice. I did not notice that my father was less precise in describing events or more rambling in his e-mails, even repetitive (but didn’t he always tell long stories?). I did not pay attention to the fewer e-mails—in the morning only, never in the evening (but isn’t once a day enough?), although I recognized that his e-mails were both short and strange.
I didn’t live in the same part of the country as he, so I did not observe his increasing problems with walking, and although I knew that events were more tiring for him, he was 85 for goodness sake! I knew he searched for excuses not to attend family events too far away, and he even said that walking distances had become difficult.
Then one day I called him when he didn’t expect it, and I had my first taste of the windowpane of denial cracking. He could hardly formulate a sentence, could only speak in fragments to his partner and receive hints from her about what to say. The two of us concocted a familiar conversation about the Yankees, but I was stunned by his inability to converse spontaneously.
When I demanded answers, this is what I learned (from his partner, Jane), what he had been determined to keep secret: mini-strokes; some falls; some confusion and problems finding words. Jane was sworn to secrecy.
All right, I thought. Mini-strokes, maybe he has some aphasia, maybe he has some weakness. I was ready to face the truth (the one I came up with, at least), which was that my father was declining, perhaps a little more than I had thought.
Then two days later, hospitalized after another fall, my father called to talk jovially about waiting for the judge to give a verdict in the trial, and the doctors spoke of “his dementia.” The word dementia was bad enough, but a possessive pronoun? His dementia? This was a man who, until a week ago (in my mind), had been at worst showing his age a little, and now people were saying he could not go home without 24-hour care because of his dementia? My own intact brain could not make sense of this sudden change in language.
Today: 8/23/10
A few days after I received that dementia-laden phone call from my father, I saw him, on his birthday. He was at a nursing home where he stayed until moving into a special facility. The experiences of that visit would fill many a blog page and will have to wait until another writing.
Now, well after the event and the subsequent decline, which happened faster and more precipitously than the medical world expected, I look back to the months before, even the years before, wondering what signs might have been there. Dementia usually has a course of seven years–not six months. When did it really start?
Was it when he go so angry and rude in the restaurant? Was it when he had that car accident (the first in his life)? Was it when he was still working, in his 80s, and how had he really been operating in the business world at that point? I wonder what others saw but withheld. The life history I thought I knew has become filled with question marks.
Dementia: This is a word I now know. Dementia came to my door and banged until I had no choice but to let it in. This word, once an impossibility, once unimaginable, became real in our family. Today, August 23, is the day I met dementia face-to-face.
Questions for Reflection: How has your life been touched by medical crises? Have you ever been conscious of the experience of denial? How do you feel changed after experiencing the decline or death of a loved one?
Writing Prompts: “This post makes me remember ______” (then keep writing). “When something bad is happening in our family, the way we communicate is ______” (then keep writing); “I often think of ______’s death, and I ______” (then keep writing); “On anniversaries of death I tend to ______” (then keep writing).
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Powerful post Judy-
I complain about my gray hair and fading eyesight but those are just complaints. And if that is all to getting older than I am more than content. Dementia is not something I want to deal with. You brought that home.
But dementia is generally about the other people (because if you have dementia, you don’t know!). I do think that people who get dementia are just done with living here and that is their way of tuning out. They may not be ready to move on, but they are also not willing to deal with their lives. But it is their family and friends who have to live with it, not them.
Candace Davenport
Our Little Books
Well, in fact, in the early stages of dementia the person often does know–does know that something is horribly wrong. They often don’t know what the problem is. With my father, that one week when I was with him (beginning August 23) was particularly painful because he had some brief periods of awareness that alternated with the “outbreaks” of bad dementia. Mercifully, that stage passed and he entered into a more severe and unrelenting dementia.
You are correct–dementia is horribly cruel to family and friends.
I have been avoiding reading your post. My husband is 57 and has dementia partially due to MS but he also has been diagnosed with vascular dementia. The signs were there for nearly 3 years before the doctors confirmed it. The early days were filled with bursts of anger that neither of us understood. His need to have everything so he could see it now makes sense. The hours he would spend sitting in front of the computer but he never seemed to be doing anything.
Sometimes I think I have been overreacting and he is just fine and then he will remind me by not being able to turn on the computer, fill out the bank deposit or spend the night searching for something he had as a child.
As hard as it is seeing my husband go through this it is always harder watching your father decline. You long for the stories that you were once so tired of hearing. The good news is they are happy in there world and that is the great blessing God has given them
I am writing a book for caregivers and I would love for you to add your experiences. I wont be publishing it for several years. My children are not ready to read about the journey just yet.
Dear Julia,
I am so sorry about your husband and what the two of you are going through. My father’s was vascular dementia, and I do believe the slow, “not-very-clear” beginning that goes on is characteristic.
Thank you for being brave enough to read and share. I would love to participate in your book however you might find appropriate. In the meantime, my thoughts are with you and your family. You, as the caregiver, are in such a challenging place. Do take good care of yourself.
Judy
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