Note: the following was written in late July and doesn't reflect any present state of condition or mind. Those of you who have cared for someone with dementia know that things change from month to month, like the leaves on the “Brain Tree” (see photo). You adapt, until you can't.
Actually, I am lucky.
Note: the following was written in late July and doesn’t reflect any present state of condition or mind. Those of you who have cared for someone with dementia know that things change from month to month, like the leaves on the “Brain Tree” (see photo). You adapt, until you can’t.
Actually, I am lucky.
Hours spent reading and writing—preparing to teach—are good training for caregiving. What with laptops, tablets, and books, one can be with the person needing care and still read and write, during those times when his or her anxiety simply needs someone else in the room.
Hours spent on the tennis courts have left me capable of lifting and assisting her when she needs it.
I am thankful we did not move to a retirement community in another state. We have longtime friends who have known us in more active years, and stay friends.
Such friends are also there to socialize with, when I get out of the house: former colleagues, book discussion groups, tennis buddies, library friends, and my church family. I am thankful.
One of the things I have learned is that often the person in need simply wants you around, sometimes necessarily visible, presumably to sooth that anxiety of feeling alone and disconnected with his or her previous life of activity. Sometimes being around reassures that no one else is in the house or coming to the house.
Of course, continuous calling for your actual presence can be wearing, especially if you think—reasonably—that just being in the house should be good enough. You’ve told her where you will be and she’s forgotten.
You’re yelling back and forth through several rooms, she’s without her hearing aids, and finally you have to get up and ask what she wants. Often, it turns out, just to see you.
Added is the fact that her favorite word when she’s just vocalizing is your name. So you ignore the calling of your name, until a certain tone is reached...and even then.
If she gets mad at you or you get irritated with her, she tends to forget the mood and even what you were arguing about within minutes.
(I am writing this while I am possibly being summoned, if the repetition of my name alone were indicative.)
Meals can be interesting. I’m thankful for the availability of so many frozen meals for two. I add a side of salad, fruit, or fresh vegetables, the latter easily microwaved using a steamer bags.
The interesting part is that my wife needs to gain weight, while I really ought to lose some weight. She’ll eat only part of her meal, but not enough to save for another meal, so I—long trained not to throw away good food—will eat the rest of her portion. She doesn’t really gain weight and I don’t lose weight.
This comes into play with the chocolate milk shakes as well. I buy them at the Kickapoo or the Harrison Braums for either $2.59 or $2.61—a price difference I’ve never understood. I then boost them with a powdered calcium pill, an appetite stimulant and protein powder to build her up. Chocolate hides many alien tastes. To do so I have to pour off half of her shake so as to mix the powder with milk. She loves them. Good.
There is now half a rich chocolate milk shake that I don’t want to waste. So I too am built up.
Only later, after pounds gained, did I hit on making three shakes (well, chocolate somethings) out of one.
Evenings increase anxiety. Darkness. An unused bedroom that she needs to check. To bed and then getting up, repeatedly. Calling me. Wanting snacks when she goes to the kitchen. It’s a bit better if I can sit with her in the bedroom, but—I’m sorry to have to tell her—I’m just not sleepy at 7 pm!
Calling me because she’s forgotten in which room I am working. So I get up (at the end of the next sentence). And the evening’s repetitions have begun.
I understand how some might turn to drink.
Sitting in the bedroom, book in hand, to help her go to sleep, early in the evening. Cat’s settled in, his paw on her hand. The AC stops blowing, so he sits up, ears riveting, like slices of radar dishes, picking up any sounds that might have been covered by the blowing. He cleans a rear paw, breaking contact with her, then jumps off the bed to patrol the boundaries of the house.
Visiting—children, grandchildren, her brother—becomes a family summit. They have not seen my wife for months and are shocked by the change in her. I have lived through the phases and respond to their dismay by laying out what changed when and how I have adjusted. Good people that they are, their concern for my wife includes a concern for me.
I tell them I’m doing fine with the present schedule, even though I am very busy while they’re in the house—partly because they’re in the house. We are at loggerheads, somewhat, on whether my wife should ever be left alone, even for brief periods, while I exercise or run errands.
We go to check into assisted care facilities, which I am willing to do, since her progressive deterioration might indeed make a more secure living situation necessary.
I don’t regret their advice, nor the visits to the facilities, but much of their reasoning is that she has already become a bit too much for me. My reasoning is she hasn’t, not yet. But their concern forces me to reconsider our situation, as much for her safety and well-being as my stress.
I am aware that I am frayed at times and show it, which adds to the stress when I think about it later. I realize the time to place a loved one in a facility may have less to do with the changes in the person cared for than with the changes occurring in the caregiver.
What’s occurring may, for instance, be a temper you have controlled for much of your life. Now it’s emerging from the stress you’re under. I snapped at her one day after being interrupted from a chore for the fifth time. She asked me, “Where does that meanness come from?” With chagrin, I realized my father was coming through.
I am enough my father anyway; I don’t want to become the whole man.
Is it time?
[Subsequently she entered a quieter, less vocal phase.]