I knew a woman with five little energetic boys under the age of ten. She used to make gorgeous, intricate quilts. I asked her how she found the time to do it, and she explained why her hobby was such a priority for her: “Everything I do for these boys gets undone immediately. I give them a bath, and they get dirty again. I cook for them, and they’re hungry again. I clean up after them, and they make a new mess. Sometimes I need to do something that stays done!”
Any kind of caregiver can empathize. This is not to say that caregiving doesn’t produce something beautiful. After all, my friend’s children have grown into fine adults, more beautiful than even her museum-quality quilts. And if taking care of someone you love who has Alzheimer’s allows them to live in the moment, needs met and dignity respected, that is a priceless accomplishment. But unlike my friend’s quilts, it’s invisible.
Caregiving is made up of tasks that are only temporarily completed. That important doctor’s appointment you took your father to may have been a heroic achievement of a goal—but there are plenty more doctors’ appointments ahead. You may have finally succeeded in securing the help of an aide to assist your mother so she can stay home a bit longer—but you know very well that the nature of Alzheimer’s disease means that the day may come when an aide at home is not enough. And then there are the day-to-day chores, cooking and feeding, bathing and dressing—these are certainly undone quickly, and you have to start again from scratch.
This is one of the reasons that taking care of a person who has dementia can be so discouraging. In addition, caregiving includes a great deal of emotional labor, which is invisible and not measurable. It is especially hard to see the fruits of your labor when your loved one is showing increasing symptoms. And as with all acts of love, there is no natural ceiling to caregiving: no matter how well you do it, you will always feel there is more you could have done.
One way to combat the discouragement that this kind of caregiving makes us subject to is simply to recognize these special challenges of caregiving. This will help you to see that the feeling of a lack of progress is not due to some fault of yours, but to the nature of the task. I call this the Rumpelstiltskin effect: sometimes once you know something’s name (that is, once you pinpoint the source and nature of your discouragement), it loses its power over you.
Another helpful way to look at caregiving is to make a sharp distinction in your mind between the tasks of caregiving and the caregiving itself. It’s actually only the tasks—cooking, feeding, cleaning, driving, and so on—that are undone as soon as they’re done. The caregiving itself—understood more broadly as your loving presence—lives in the moment, and it is completed there in the moment. Laundry lives in time, and so it goes through its cycles. That’s the nature of laundry. But love exists outside of time, and it is always complete.
When you take care of someone you love who is suffering from any kind of cognitive decline, you may feel as if you have nothing to show for it. You may feel like you got nothing done today. But you are actually making and wrapping your loved one in the home-made invisible quilt of your loving presence. And that is something well worth doing.