Alzheimer's disease · Caregiver · Caregiving · Grief · Nursing homes · Role reversal

Waiting / October 22, 2006

It’s Sunday morning and I’m still staying at my mother’s house. I’m trying to think of moving some of my belongings back to my house but I can’t until I know whether my mother will be able to move directly into AL from the nursing home. Part of this is just my natural caution and part is superstition. If I do too much to prepare, I’ll jinx it. The AL facility indicated that they may be able to accommodate her soon but nothing is definite. So I’m dangling here.

My mother seems to be adjusting to the nursing home. It’s hard to tell what her day is like because she has such a hard time articulating her thoughts. I think she’s begun to refer to herself in the third person, on top of everything, so her talk is a labyrinth of dream and reality, past and present. I believe that some of this is due to delerium on top of dementia, having seen this in my father when he was hospitalized. A gurney ride made him think he was on a train, and so we’d hear stories of his travels when we’d visit. Once he told us he’d watched a television show being filmed–as we listened to him I saw a nurse draw the curtain around one of his roommates’ bed and figured that was the source of his fantasy.

So I do think that some of my mother’s talk springs from her dislocation. On the other hand, she has not asked to go home lately. As we walk the halls, she waves at the staff and residents she passes. A woman emerged from her room and said to me, “We say good morning to each other every day. She’s so sweet.”

I’m not entirely surprised because I did think the socialization would be good for her, even though she still protests. The nurses often sit her by their station when she’s idle–she used to have a small body alarm clipped to her, but I don’t see that all the time. I think these are the folks who are either lonely in their rooms or prone to sudden urges to wander. The sight of them was a shock to me at first, but a couple of days ago I arrived to see my mother talking animatedly to the woman next to her. She was tapping the arm of her chair as she spoke. The other woman looked unimpressed but my mother continued, and when she saw me she said, “This is my daughter Debbie!” As we walked away, my mother said, “Okay, I’ll see you later,” and I realized that she sees these people differently. She’s in a mental place where they are not “other”–they are just folks she happens to be among at this moment in her puzzling world.

Her doctor had told my sister and me that we would have a harder adjustment than my mother, and while I don’t know that it’s true, I hope it is. I’m realizing that I’m mining something deeper than the stress of illness, bureaucracy and money. It hit me the other day that I might have to let go in order to help her most, at a time when I want to hang on to her even tighter. I’ve gone to bed a couple of nights thinking, “That’s it. She’s coming home, no matter what. I’ll do anything.” But how would that translate into practice? Do I sell my house and quit my job? I’ve thought of these options, but here’s where I hit bedrock. My job is one of my lifelines–I love the people I work with and I love the place I work. It keeps me afloat.

The other problem for me is that I am easily discouraged and prone to depression. I don’t have the self-motivation of so many of the caregivers I’ve come to know and admire. When I get overwhelmed I stay in bed. My mere presence is not going to make my mother happier or better, not with my temperment. I’m running on reserve tank right now.

So I’m waiting. I’m reading Sue Monk Kidd’s When the Heart Waits which is a meditation on a stressful period in her life. Here’s a wonderful passage:

This is an important principle in waiting: coming to the enormous realization that there are seed forces within us. The potential for wholeness, Life with a capital L, is fully here. We don’t have to go out in conquest and make it happen. We can simply let it happen, consciously.

Selah, as the Psalmist says.

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