One e-mail, one connection

I had to look up her picture in our high school yearbook.
I remembered her name but had to remind myself what she looked like. I don’t think we were ever in the same classes, though maybe in grade school.

Not that I wasn’t happy to hear from her.
Since my 30th high school reunion, mostly through the power of Facebook, I had been in touch with several former classmates, some I had seen at the reunion, some who weren’t able to make it.

Merle wrote to me after my blog on the reunion, joking that she was sorry she missed the
mysterious guy in the burgundy sport coat whom I had written about. I don’t know how she had found me. I only know what connects us now.

I called up her second e-mail as I stood on the corner one morning last week, waiting to meet up with a friend and go walking. When I saw the word “Alzheimers” in the subject line, it did not particularly shock me.

I hope it doesn’t sound pompous when I say that I don’t think a single week has gone by since I wrote about my family’s experience with Alzheimer’s in the Tribune Sunday Magazine a year and a half ago, that I haven’t heard from someone about it.

At first, the response was shocking – both in volume and in the depth of emotion. In some cases, I had friends and colleagues who were going through much the same thing my family and I were going through and yet we had never talked about it, never knew. But I was just as touched by total strangers who wrote or approached me, and who continue to do so, saying they read the story, that they remembered it or that they related to it somehow.

When I called up Merle’s e-mail while standing on the corner last week, the words, sadly, were not unfamiliar. And so, as I always do, I kept reading:

Dear Missy,
My father just died from dementia this summer.  We didn’t go to the reunion, because we couldn’t afford to go back to Chicago again after the funeral tapped us out.  I am married to xxxx. from high school, we have two children and we live in [California].
More to the point, my father was diagnosed in 2000 with Alzheimer’s.  At first he lost his short-term memory and our lives were like the movie, “Ground Hog Day.”  Every three minutes we would have the exact same conversation. 

“Dad, you have a doctor’s appointment in an hour, you have to get ready.”
“You didn’t tell me about the doctor’s appointment, what doctor?”
“Doctor Green.”
“Who is Doctor Green?  He is not my doctor, I am not going.”  (repeat for the next half hour)

The good part was that because my father could not remember, we just would make up answers until he would respond and do what we needed him to do.  He was angry, suspicious, and I assume – terrified.  He knew he was literally losing his mind.  I think in some ways the beginning of the disease was about the hardest, because of the anger and the personality change.

My mother died in 2001 and my father really deteriorated at that point.  We had moved my parents out to California in 2000 because they were both so sick and we needed to take care of them.  From 2000 to 2009, my father lived on his own with a caregiver who came in during the afternoons and evenings.  He never left his home, never tried to cook, and seemed to be safe on his own. 

He slowly forgot our names, our ages, his name, his age, his profession, and everything about his past life.  His personality totally changed.  He went from being the most gentle and most polite person I knew, to a person who was rude and threatening with strangers.  He went from a man who was obsessed with diet and exercise to a man who ate junk food and refused to leave his home.  But, he was always loving and kind to his family and his grandchildren (even though he did not know their names).

Education was always very important to my father.  He was always embarrassed that he was the only member of our family with only a baccalaureate degree.  Two years ago he asked me if he was in first grade. I told him that he had been in first grade 81 years earlier and that he was an accountant.  He seemed very happy for a minute or two, until he forgot and asked me again.  The only thing that my father remembered was that my siblings and I were very important to him and that he loved us.  When I would come over, he would often tell the caregiver that she could leave, because I was there.  He would sit with me and hold my hand while watching television.  He would hit strangers.

One morning this past May, my father refused to get out of bed and to eat or drink.  We took him to the hospital and were told that it was end-stage Alzheimer’s and that his brain had lost the ability to feel hunger or thirst.  We took him home to die and it was brutal.  He literally starved himself to death.  When we tried to feed him or give him something to drink, he would spit out the food or water, he couldn’t swallow and did not know how to eat.  He also went blind.  A friend of mine is a neuropsychologist and she told me that the parts of the brain that control appetite and thirst are close to one of the vision centers and that it made sense to her that he would lose his vision at the same time.  However, even in the last few days before he died, he would pull me, my brother and sister toward him in bed and hug and kiss us.

He couldn’t stand, talk, or really move, but he still knew who we were and he was saying good-bye.  When he died, my sister and I were lying beside him in bed and holding his hands, and his caregiver (who had taken care of him for seven and a half years) was holding his feet. He just stopped breathing.

When the dementia got severe, I felt like not only was my father dying, but that my childhood was dying with him.  A part of my childhood was also going, because those memories of me were gone.  The mourning process has been more difficult than I expected.  I have had to take care of my father for the past nine years and suddenly that responsibility is gone.  I miss going over to his house and seeing him sitting on the couch, watching television, and eating candy and potato chips.  I miss seeing his face light up when I walked in into the room.  Even with this horrible disease he was always my father and I will always miss him.

I am sorry that you are going through this too.
Merle 

I’m not sure why this one letter from this one old friend affected me the way that it did. Maybe because her words were so spare, her feelings so raw. Maybe it was because I happened to get her e-mail in the days following the two-year anniversary of my mom’s death. Or maybe, more likely, because as she described her final days with her father, I could not help but think of our final days with mine.

All I know is that the tears came when I least expected them, standing on a corner, alone with my Blackberry, connected to someone I barely remembered. And that they came hard.
With her permission, I am going to post Merle’s letter on the Alzheimer’s page of my website with hope that it will encourage others to tell their stories. Not to make each other sad, but to feel connected. She said it was cathartic writing about her dad, that she felt a little less isolated.

That’s how it works.