Image by Sh1ra from Pixabay
Several months ago, our family determined that my husband’s mother (let’s call her Rayna) could no longer live alone. Although she began declining a number of years ago, she managed to stay in her house with the help of numerous visits from family and hired help. This support eventually proved not to be enough, however, and my brother and sister-in-law graciously opened their home to her. We decided to pitch in by taking her every other weekend.
I was sort of used to the repeated questions Rayna would always ask. When I would visit her while she was still at home to bring dinner and eat with her (Mondays were my responsibility), she would literally ask, “So have you done anything exciting lately?” every minute for the first ten minutes or so of our visit. She would then mention that it’s a beautiful day often six or seven times or more (even if it were overcast or rainy). After that we would be back to the “have you done anything exciting lately” litany.
Simple short answers worked best. I went along with the conversational loop for the entire time I visited: while we ate, as I washed the dishes, during the time I straightened up. Sometimes I could throw in a twist by asking about when her boys were little or did she enjoy working at the hospital when she was an RN. But even directing the topics in that way couldn’t push her out of the rut for more than a minute. As soon as I finished a sentence she’d be right back to, “so have you done anything exciting lately?”
I often wondered if there were a different reason for her mental decline than just dementia because Rayna doesn’t seem like the typical dementia patient. We’ve all read those articles where some poor elderly person took prescriptions from too many different doctors and ended up all loopy from them. It always seemed like Rayna’s situation was like that, probably because her lost abilities and skills seemed so atypical.
She has never forgotten any of her family members; she remembers the names of all her grandchildren. Rayna dresses herself (although since about a year ago she no longer bathes; we have to make her do it). She is not oppositional, anxious, or difficult like so many older folks in her situation. In fact, she is very pleasant and I dare say well adjusted. When Rayna is with us for the weekend, for instance, she will ask (a couple dozen times a day) when she can go home. When we tell her she doesn’t live alone anymore, she is not angry or disappointed. She simply replies good naturedly, “oh well, it’s hard to get old.”
Some of you reading this may know very well that in fact there is nothing atypical about Rayna’s decline. I’m learning more as I accompany her to doctors’ visits and speak to friends and colleagues who are going through the same thing. Cognitive decline manifests differently from person to person. Some folks forget who they are; others lose track of the calendar. Many will stop enjoying activities and interests they’ve always loved. The only thing that one can count on is that the progression is in one direction: downward.
Since I can’t explain her difficulties, I can at least observe them. And maybe learn something. For instance, it’s curious how Rayna’s dementia manifests from day to day. In the mornings, when she first gets up, she literally asks where she is constantly. She’ll say, “Where am I?” We answer. Then she’ll ask, “How did I get here?” We tell her. Then, immediately, “Where am I?” This goes on for a few minutes before she somehow jumps that loop and everything seems normal for awhile. She’ll comment on something from the newspaper she’s reading or notice something interesting on the ticker rolling across the bottom of the TV screen. Then it starts again: where am I? How did I get here?
Food comes next. She’ll ask if we have any cereal or some toast. “Of course,” we say. We eat together. Two minutes later, “Do you have any cereal or toast or something?” So we tell her, you just ate. “Oh. Okay. Do you have any cereal or toast or something?”
The most intriguing part of her questions is that they are exactly the same every day. Not only does she ask where she is, but it’s always in the same way (and I’ve not counted, but probably the same number of times every day). It’s always, “Do you have any cereal or toast or something?” When we tell Rayna she lives with her middle son and visits us occasionally, she always says, “Why, did they get tired of me?” Literally those exact words every time. All day. She does the same thing when asking about how many dogs we have or where did that cat come from. It’s like there are seven or eight loops she has and she can only go from one to the other.
It makes me wonder what she feels like. How can you not know what you just heard? What is it like to not be able to think? To know? To remember, anything? So many people who work with dementia patients say they are “in the moment.” Usually that’s a good thing. It means you’re mindful. Present. But is it really the same thing if you literally only have that one moment? Surely it’s not mindfulness when you have no ability to think about anything else.
So on the one hand it seems like that would be awful. I love to think and daydream and imagine; it’s the major reason I write and a large part of every interesting day. Wouldn’t I be sad not to engage my mind in ways I love? Rayna, however, proves that isn’t so. She’s as pleasant as she can be. No hint of stress or worry emanates from her. She knows no frustration. Sadness does not plague her. In her case, at least, life is coming up roses. Even if it is just one rose at a time.
On the other hand, then, I guess I can’t feel too sorry for her. I definitely wish she were still herself and could travel and spend time with friends (indeed she still has a few who are able bodied and minded). But she’s not aware that she’s not aware, so what’s the harm? In fact, maybe her situation is almost welcome. She’s not worried about running out of money or where she’s going to live or how she’s going to eat. Everything is done for her; she’s safe; no concerns about the future or the past worry her.
So here she remains, despite having always said she never wanted to be “cared for.” Her presence teaches those of us in her family about the importance of patience and empathy. And it’s a hard lesson. Mostly because her needs remind us that none of us can entirely choose the way we age. We can say we don’t want to be a burden or to have to depend on others but much of it may be out of our hands.
The best I can take away from all this is to take good care of myself physically and financially and to keep my long term care insurance up to date. We have a son who may not mind if his dad and I needed to move in because keeping up our own household might be too much. But it wouldn’t be fair to expect him (and maybe his wife or girlfriend) to manage our needs if one or both of us were incontinent (like Rayna). Or bedridden or perpetually angry and oppositional.
The curtain between Rayna’s mind and her world is invisible. Anyone looking at her would think she’s just a pleasant older woman, not someone whose mind has essentially no past or future. But that curtain could fall on me or my husband or anyone else I know. The time to think about it is now.
When she was still working as an RN in charge of discharge planning at her hospital, Rayna advised many families about placement for aging relatives. She housed her own in-laws in an excellent care facility when their needs dictated intervention. We all visited them frequently and my father-in-law was there almost daily. They were actually quite happy there.
It has made me wonder, in recent years as Rayna continues to decline, why she never planned for her own possible needs in the same way. You would think someone who didn’t want to “be cared for” would have made some arrangements. Most likely she just never thought it could happen to her. That’s a bias we all share: I’m not like that. The problem is, of course, we are. Or at least we might be.
We should live our lives mindfully and take good care of ourselves, sure. But Rayna’s curtain, more than anything else, teaches me to accept that eventually I may have no control over my life. With that realization comes the obligation to prepare. Have the talk with my son; maintain my long term care insurance; have plans for the house and other items.
Truth is, if it gets that far, I won’t know that I’m no longer in control. Maybe that’s God’s way of making up for such a fate. I can live with that. As long as I know that there’s a plan in place and my needs won’t interfere with those of my family. I can have it that way. But I have to plan for it.
Now.