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 was just over at the Alzheimer’s Association Caregiver Forum where someone had posted a message about the caregiver’s stages. I think I passed from one stage to the next on Sunday night, in a matter of minutes. I had a meltdown right in front of my mother (which I had tried never to do) and although it seemed to come out of the blue, these transitions never do.

It doesn’t really matter what specifically precipitated it, because it could–and would–have been anything. In an instant I knew I was going to start crying, in a way I hadn’t cried since my Dustin died, so I went into my bedroom and lay down in the dark. But I can’t close the bedroom door without arousing my mother’s curiousity and I couldn’t keep myself quiet, so she followed me in. I just let it all out, and she tried to comfort me and understand why I was so upset. Of course I can’t tell her that she is the reason I’m sad.

Well, it’s actually not that simple. The real problem is that I cannot get it into my head that I can’t have a rational discussion with her about assisted living. I tried again on Sunday afternoon, using the “I’d like to move back into my house” tack. Of course you do, she said, as she always does. I can’t leave you alone, I said. She agreed with me on this until I suggested, once again, that she move somewhere where she’d always have someone around, even when I’m at work. I would never do that, she replied.

How do people do this? Why does it have to be so awful? I know I sound like an 8-year-old, but I also feel like one. Old enough to know there’s something dreadful afoot but too powerless to combat it. And I think I reverted to my 8-year-old bag of tricks when I burst into tears later in the evening.

I’ve read the most moving and heartbreaking personal accounts of how loving family members moved their moms and dads into assisted living or nursing homes. Nearly all of these accounts caused intense grief at first, even though most of the moves resulted in an improved situation for all. Almost everyone I’ve spoken to says they wish they had done it sooner, but I understand how one can believe that remaining in one’s home is best. It’s still excruciating.

Another issue is that I’m into my third week away from work, and Thanksgiving is coming up in a couple of days–it doesn’t look like we’ll be spending it with family, which disappoints me. And Saturday was the seventh anniversary of my father’s death. And my 13-year-old dog Lily is having increasing difficulty getting around–am I just hanging on to her because I’m afraid of losing one more part of my life?

So my mother is now following me around, worrying that I may be “coming down with something” and wanting to help, which is sweet but also accentuates how our relationship has changed. Tonight she said good-night at least five times, each time telling me that she was going to leave her door open during the night in case I needed her. I feel my eyes well up, just writing that.

I was still very upset today, so I called the local Alzheimer’s Association and talked to the social worker there, who sounds wonderful. I made an appointment to talk with her, which I should have done much sooner than now. I have a med appointment tomorrow with my longterm psychiatrist and I’ll ask him to refer me to a therapist. Can’t do this much longer.

Not much to report, other than the obvious change in my theme. I had been on the lookout for something with a yellow background and liked this one, which is called RetroFlowers. I like the overall balance of the elements and find the text to be much more readable than my last theme. I also liked the header image–it’s suggestive enough to call to mind the wallpaper in Charlotte Perkins Gilman’s novella.

I think the presentation change mirrors a change in my attitude toward this blog. I began it on an impulse–it was a way to objectify my thoughts, to leave my own little breadcrumb trail. I wasn’t writing for anyone but myself. But the writing inspired me to explore this particular corner of the blogosphere, and, as is evident from my growing blog roll, I’ve met some remarkable people on the way. I feel as if I’ve found a community, and this has been a wonderful surprise for me.

As a result, I now have some friends who are making my caregiving experience a lot less lonely. Not only do they know–in their individual ways–what it’s like to become your parent’s parent, but they also challenge me to look at this experience from different vantage points. And I’ve discovered that they are giving me the strength to cope, to face what I can’t change, to see the humor and the meaning in it.

So I take back what I said in my first sentence–I do have something to report. I am reporting that what began as my little voice crying in the wilderness has become one side in an ongoing conversation. And it’s the conversation that is keeping me afloat.