Friday, April 17, 2009

Mom's Alzheimer's Journey #1

I've been doing a lot of writing over the past year about caregiving, thinking through the long illness of my father and the subsequent diagnosis of my mother with Alzheimer's.

Mom is a former R.N. and a published writer who has slowly been losing her language ability. This is her primary symptom. At this point, as she puts it, she can read newspaper headlines, and that's about it. She can write emails of about a line--and she struggles to spell most words, a sad irony given that she used to be an editor as well as a writer. She struggles to speak, but we still can communicate if she has plenty of time to form a thought.

She has told me that the last thing she hears will often echo in her head. Once when she said that, I said, "Kathleen [the name my family calls me] is beautiful and intelligent; I'd like that to echo in your head!" And we laughed and laughed. Another time she told me that she says things she doesn't mean and that she repeats certain words and phrases for no reason. One of those phrases is "thank you." I told her I'm glad she blurts that out rather than "fuck you." Again, we laughed.

She definitely still enjoys laughter--although she has told me that she often doesn't understand jokes anymore, the ones she knows she would have understood in the past. We laugh when we can and just try to enjoy being together whenever possible because, well, this illness really sucks. Her awareness of her decline never ceases to amaze me. It's as though her cognition is declining but her metacognition is not.

Soon after Mom was diagnosed about a year and a half ago, she began keeping a journal, handwritten in a notebook. Her idea since then has been to write as much as she can for as long as she can. Recently she gave me a notebook, completely filled, and told me to do with it what I wish. She said she'd like me to blog about Alzheimer's, and about her experience, so I'm going to share with you some entries from her journal now and again.

As I read the journal, I realize how fast her decline has been. She wrote the first entry a year and a half ago. She wouldn't be able to write at this level now, but she is still writing sentences whenever she can.

To understand this first entry, you need to know that just a few weeks after my father died, Mom fell, dislocating and breaking her shoulder. She was in and out of the hospital and rehab facility for a couple of months, during which time she contracted c-diff, a tenacious and horrific intestinal bacteria. (For a while there, I was beginning to understand the biblical Job at a level I never had before.) She lived hours away from all three of her daughters and so we set up caregivers to help her at home. After a while, Mom didn't like that. She decided she wanted to move into an assisted living community in the Bay Area where she'd be close to my sister Crystal (who lives just 2 minutes away) and me (I'm about 30 minutes away). My other sister lives in San Diego and comes up quite often.

I've kept the spellings and grammar the way Mom wrote them so that readers can have a sense of her abilities but have included corrections and more information in brackets when needed for clarity:

[August 23, 2007]

Even before my husband died, I remember having symptoms of Alzhemer's Disease--for instance it was difficult for me to finished a sentence and find another. My husband was concerned, but what could he do?

Also, I had trouble typing. My fingers just wouldnt cooperate. Then I had balance problems after my husband died. Formerly steady on my feet, I wasnt any longer. When I saw a PT [Physical Therapist] when I came home, the p.t. gave me a cane, which I relied more & more on. (I've always been active, joined a gym and exercised regatarly [regularly]) -- daily.

Then There was the day I couldn't remember how Hammel starter [started; Hammel is the last name of a friend of Mom's. She was trying to look up her friend's phone number]. I have an index card with all the letters on it, but I still couldnt figure it out. Finally, I did

The neurologist said I had an atypical case of Alzehermier's. My memory seems to be intact. Usually, the first symptom was memory loss, but with me it was something different. He wanted to see me in 6 months -- it was finishing sentences. My writing isn't wat it used to be--My spelling isn't either--I have trouble spelling simple words that I never used to have trouble with before & it's not just trouble spelling but it's trouble spelling words that used to be easy for me.

One time I didnt recogognize a particular place--there was like a blank wall before me--this was when I had caregivers but it hasn't happened sence [she corrected this to "since"].

My eyes closed [she fixed this to "close" and wrote "example of my spelling"] of their own volition, although I'm not sleepy.

I also mix up lt [left] & right, which I never did before--my caregivers say "the other right." (When I had caregivers)

My daughters have been wonderful. They planned the memorial service for my husband, which turned out wonderfully. Ann [oldest daughter] takes care of my bills--Crystal [youngest daughter] has been my "personal shopper" and fixes things, and Kathleen takes care of doctor visits and she goes into the doctor's office & takes notes.

For some reason, I have had the urge to unlock my safety belt when I am riding in the car. I havent told anybody about this, but I wonder if it's a percuor [precursor] to wandering away. This has been going on for sometime--even when I had caregivers.


Anonymous said...

Hi everyone,

I work with the ICARA Study, whose goal is to explore if an investigational drug, called Bapineuzumab, can help slow the progression of Alzheimer's Disease. I came across your blog and just wanted to share some thoughts. Caring for a person with Alzheimer's disease is a difficult task and can become overwhelming at times. Each day can bring new challenges. Websites such as this one are great support resources for caregivers.

Holli said...

Thank you so much Kate for sharing this with us. I've always thought how horrible it would be for the person with Alzheimer's and for the family too but haven't yet had any personal experience with it myself. Your post here has given me that. I am so sorry that you are all having to go through this but I do love seeing the cohesiveness your family has with each other and the much obvious love that created it.

Collin Kelley said...

Oh, that line about wanting to take off her seatbelt is really haunting and surely a poem. Thanks for sharing this with us Kate.

Joanna@BooneDocksWilcox said...

Thanks for sharing Kathleen.

Lisa Nanette Allender said...

Kate, Hi there. Have been scrolling back through your entries, to see if I'd missed any. I'm reading all the Alzheimer's entries tonight. Thank you for posting these. Please keep hope alive for your Mom and you. You are both in my thoughts and prayers, dear.