As a caregiver, you may learn that things change in the relationship between you and the loved one for whom you care. For example, you may learn that the father you’re caring for is more willing to engage in activities when they involve other people, and less willing to do so when they involve you—when it was never this way before his illness. One caregiver’s personal response to this particular situation. . . .
“If I were in that situation, I would use my time to set up those activities with other people, and not worry about whether he is mad at me, or try to resolve that in any way, and I wouldn’t push him into activities with me.
When my mom was healthy, we had our share of conflicts, but now, we really don’t have any, and in part that’s because she’s become a much more passive person, but in part it’s because I accept her exactly as she is, and I let things go and understand that they’re really a manifestation of her brain impairment, and not really about me, or about our relationship. Heck, even if something IS about me, or our relationship, we no longer have the wherewithal to resolve it, so why worry about it in the least?
So if she doesn’t want to eat a particular food, for example, I don’t try to get her to remember that she used to like that food, and I don’t take it as a personal judgment about my cooking, or as a form of “acting out”. I take it more like an interesting problem to solve: okay, she won’t eat chunks of vegetables in soup any more. But she needs to eat vegetables. Hmmm…will she eat them if the soup is pureed, or the vegetables are finely minced?
This may sound strange or cold, but I often find myself fascinated by the way her brain works right now, so instead of being upset by something, I perceive it as something interesting to observe and ponder. For example, I noticed that at some point she started eating only the liquid part of soups, leaving the solid things. One day, she gave me an aggrieved look and pointed at the vegetables in her soup, saying, “What is all this stuff? Soup is supposed to be liquid!” Well, that may be objectively incorrect, but it’s her reality at this moment, so I try to make all her soups as liquid-y and unchunky as possible. And I think a lot about how much trouble she increasingly has with complex things (soup that is both liquid and chunky; sentences that are too long, or use words that she no longer grasps), and I marvel at the human brain, that in its normal state can deal with so much complexity, and ponder what kinds of things can go wrong in the brain to scramble its functioning in these particular ways. And I try to puzzle out what kind of “work-arounds” can make things accessible to her. Maybe it’s making the soup a different way; maybe it’s finding different words to explain something to her; or maybe it’s a change in how I see something, realizing that there’s been a fundamental alteration in her reality, and accepting that, no matter how things were last week or last year.
Once I see that she doesn’t like an activity, I drop it and don’t try to get her to engage in it again, even if it is something she used to love. Or if she doesn’t get engaged by a particular person, I don’t try to push that contact, even if it’s someone she “should” be interested in (e.g., a relative she’s known for decades), or someone she used to like. Instead, I try to notice what people can elicit some conversation or social reaction from her, and then try to get her around those people whenever possible. I have noticed several times when she is absolutely flat around me—no interaction, no engagement, no conversation—but she’ll get totally animated and even chatty around someone else, even someone she doesn’t even know very well. I absolutely refuse to take that personally. I’m just happy that there is someone or something that could animate her a bit, and, at times I even find it a great source of amusement. For example, a couple of times I’ve found her chatting up a storm, telling old stories from 30 years ago, to a woman who comes a few times a month to clean our house, who barely speaks any English. There’s my mom, who hasn’t said anything to me for two days except “I’m cold,” yakking away with great enthusiasm to the one person in the house who can’t understand her. Watching something like that can be better than a good comedy routine, though of course it is also a huge tragedy.
I do worry a lot about the extent to which I should let my mom just sit there and be passive. . . . if it’s passivity with no evident unhappiness or distress—that’s something I’m trying to accept as okay.
Before I knew my mom had AD, and after she retired from her job (she’s was a life-long steamstress), she once complained to me, “People keep asking me what I’m doing now that I’m retired. I thought being retired meant you don’t have to do anything! Why should I have to explain what I’m doing?” Sometimes (a lot of the time, actually), it seems to me that she prefers to be doing nothing, and I try to accept that as a reasonable choice, even if it reflects her disease as much as the free will of an unimpaired person.”
- Jamie (Family Caregiver)