The Yellow Wallpaper

I finally got the thick envelope from the Veterans Administration, and I felt like a high school senior, trying to guess the contents before opening it.

The VA awarded my mother the full Aid & Attendance benefit, retroactive to the end of Dec. 2006.  Whew.  BUT because she has Alzheimer’s, they will designate her as “incompetent”, which means they will appoint a fiduciary–another delay before we get any money.

They refused to consider my legal power of attorney when I first applied for the benefits, so I had my mother sign the application, even though she understood only broadly what she was signing.  My only alternative was to go to court and get guardianship of her, which would have taken too much time.  I understand from reading VeteranAid.org (I could NOT have applied without the help of this website and its creator, Debbie Burack) that the VA now has a form that assigns representative power to someone other than the applicant at the outset of the application.  My recommendation is to complete that form, even if the applicant is still aware of what’s going on.  I don’t know if it will prevent a delay like mine, but it’s easy enough to do.

Anyway, I will send the VA another letter, along with another copy of my power of attorney, and request that I be appointed my mother’s fiduciary.  I’m feeling like this is a time-consuming pantomime–do they really believe that someone with dementia could complete that application, just because they signed it?  At least I know that the money is coming at some point, which is an ENORMOUS relief.

My mother is doing as well as I can expect at Garden Manor.  I really have no complaints about her care–they have a wonderful staff and the place is clean and cheerful.  There is a regular round of activities–exercise, rides, cookouts, parties, music and get-togethers.   There is a monthly group for family members, run by the staff social-worker.

For me, the caregiver, it’s a challenge to straddle that line between accepting the inevitabilities of the disease and trying to keep some kind of meaning in my mother’s life.  I remember thinking–only a year ago–that once she could settle into assisted living we’d be able to coast for awhile, that there would be a holding pattern, just so I could catch my breath.  There is, and there isn’t.  Now that I don’t have to worry as much about her safety and physical care, I can notice more of the disease itself.  The gradual fading away of affect, the effort required just to negotiate her world, where she is continually puzzled by her mother’s absence, where she is still responsible for “the kids”.  Conversations, such as they are, are a great effort on both of our parts.  She is usually just THERE, while I try to tease information out of her.  She can’t remember whether she ate lunch, but can recall where each of her siblings went to high school.

So it’s a hard experience all around.  She’s slowly disappearing.

I noted to myself yet again the other day how much I enjoy talking to the other residents in my mother’s wing. I’ve mentioned this before and I don’t mean it to sound crass, but I never expected this. What did I expect?

Thinking about it now, I wonder if I just didn’t expect the social life that persists in spite of the fractured cognition. I can tell that not all of my mother’s neighbors have Alzheimer’s Disease–some may have vascular dementia or Parkinson’s–but all seem to have some shortcomings in terms of reasoning or emotional control, if not spatial and temporal confusion. A couple of them rarely speak. There is much repetition and short-term memory loss, and something akin to what we called “suspension of disbelief” back in my college literature classes. This occurs when we accept a different set of rules in certain situations, such as watching a movie or attending a play. We expect that there is a method to the temporal and spatial shortcuts, for example, and accept them on good faith.

Maybe that’s what dementia is, essentially–a suspension of disbelief. I don’t want to torture this metaphor but I can imagine that the outside world becomes increasingly like a weird movie to someone who is losing their ability to reason. I wonder if their delusions are efforts to organize things from the inside out. My mother believes that she is once again a schoolteacher and the people around her are her “kids”–although I don’t think her delusion is altogether neat and stable. I think it becomes “stronger” the more vulnerable she feels.

I’ve been realizing that, as far as visiting goes, longer is not necessarily better. A short visit or outing is best, and if I overstay or if I keep her out too long, she starts to worry about what the “kids” are doing without her around. Today we took a slightly longer drive than usual, and when we returned I noticed that my mother looked tired. “Are you going to take a nap?” I asked, and she sighed. “I’ve got to check on the kids,” she said.

Liz and I are getting better at responding. “It’s Sunday,” we’ll say, “so most of the kids are off today. You’ll be able to take a nap if you want to.”

“That’s right,” she finally says. “I think I will take a nap.”