Alzheimer's disease · Behavior · Caregiver · Caregiving · Family

Going home / August 29, 2006

I didn’t make a conscious decision to take a hiatus from posting, and really didn’t notice that I’d withdrawn until Gail mentioned it to me in an email. But it’s true–I’ve felt so weighed down by everything that I haven’t had the spirit to write.

Today was an awful day. It didn’t start out that way–I left my mother in fairly good spirits when I went to work. I called her, as usual, at 9:30 AM to find her confused and struggling to communicate why. All I could understand was that she had gotten “a call” from someone who wanted her to do “three things.” She was a nervous wreck about it because she wasn’t sure what the things were or how she was going to do them.

I know now that situations like this one are most likely products of an offhand remark or a waking dream. I might have said something earlier about having to run errands today and my words had taken on a life of their own in my mother’s mind. We had a minor crisis last week when she misinterpreted what must have been a poorly-worded message about Eva’s arrival time as news that she was getting a new homemaker, and then wouldn’t open the front door when Eva arrived. But I no longer try to get to the root of the miscommunication because that rattles her more, reminds her of the broken synapses. Today I merely told her that it was MY job to take care of obligations like that, not to worry, and if anyone calls again she should phone me at work.

She seemed reassured by this today. I repeated my daily mantra: Now you just relax until Eva comes. She’ll be by in a little while. Then I promised to call her in a half hour.

So much of my own mental equilibrium is the result of me firmly (maybe even thickheadedly) keeping my own counsel, measuring what I see and hear against what I know and believe. In my mother’s case, this involves acknowledging to myself that–yes–leaving her alone for even a short time is risky, but because I still sense that she is aware of her surroundings and that they mean something to her, I’m taking the risk. Keeping my own counsel requires a certain stubbornness and myopia–if I let in too much of the outside world the whole thing collapses.

But that is what happened today. I won’t go into detail, except to say that when my sister blows in, with all her anxieties, willfulness and words, my mother often gets worse. My sister doesn’t know when to back off, doesn’t realize that her battering ram of questions and advice (Aren’t you going to comb your hair? Why are you just sitting there?) unnerves my mother, pushes her further into withdrawal. And then that mental deterioration becomes the rationale for the imperative to “do something.”

So my sister and I had a fight over the telephone. I was at work and I’m sure some of my coworkers overheard my angry tone. I know that my sister tries to help, but we are on such different tracks that I feel essentially alone with this giant burden. I want to give my mother any and every remaining bit of happiness that her life can offer. I know that my sister wants that, too, but she is going about it very differently. I ended up slamming the phone down.

As far as I know, my mother’s visit with Eva went well. My sister dropped by afterwards, though, and my mother ended up very agitated. She began again to worry about the “three things” and this time it was her oldest sister (several years gone) who wanted her to do them. When my telephone rang again at work later in the day, it was my sister, extremely upset. My mother now wanted to “go home.”

I’ve read that this is a common desire expressed by Alzheimer’s sufferers. I’ve been advised to understand it as a need for reassurance–it’s not necessary to make her understand that she is home, but rather to slow down, back off, reassure. This was the first time my mother had expressed this desire, though, and I think my sister wanted to rush her to the hospital immediately. And so I left work early, only because it was clear that Liz was as much of the problem as my mother was.

When I got home, my sister was talking NONSTOP and my mother looked extremely vacant and still. At one point, out of my mother’s earshot, I asked Liz not to keep questioning her and prodding her–just to back off. But she was on a tear, complicating even the most minor of decisions. My mother had an appointment with her nurse practitioner–Liz couldn’t decide whether to take her car, come with us in my car, what should she do, what should she do???

“I’m taking my car,” I snapped.

To complicate matters, I had called the home care agency to ask for more hours from Eva, and they returned my call at that moment. I was happy to know that Eva had agreed to arrive earlier on several days, but when I told Liz she began to argue with me. No, she said–she’d asked Eva and Eva had said NO, they must have gotten it wrong. She repeated this and I felt my equilibrium begin to totter. Reality is difficult enough to face without having to look at it through her perverse, doomsday perspective.

So here I am, hours later, trying to regain it. The nurse practitioner responded to our report of my mother’s day with a sympathetic look and a reminder of what we are dealing with. This is Alzheimer’s. When the confused behavior becomes too much of a risk she must be watched 24/7.

My mother’s desire to “go home” was a sign to me that more bonds are fraying, that home is becoming more and more the desire to have comforting people around her, all day, rather than these particular old walls. Familiarity is losing its connection to her memory and reasserting itself as a more immediate concept, no longer reliant on the past. So in a way, she might be helping me to see what she needs.

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