On November 4, my 75-year-old sister-in-law (I’ll call her Emma) was driving erratically on Colorado freeways. Numerous 911 calls eventually led to a policeman catching up with her. It didn’t take him long to realize that something was wrong, and he called for an ambulance. (She’s an old white woman. I sometimes what would have happened if she had been black. But I digress.)
Doctors at the ER quickly figured out that she had had a series of strokes. Imagine a blood clot bursting in your brain, sending detritus everywhere like so much confetti, marring tissue and neurons and whatever else. Until that moment, Emma had lived alone on a few rural acres with six dogs and six goats. She taught children how to swim. She had friends. She had a life.
Emma had poor hearing and low vision to start with, but the strokes took away what little sight she had left in her one good eye. The state of Colorado, unsurprisingly, revoked her license to drive. Emma could no longer live alone.
Our family decided to move Emma in with us, if she agreed, until we could decide on a long-term plan. After a stint in rehab, she arrived at our home in Oregon the day before Thanksgiving.
December was a whirlwind of medical appointments and attempts to get her properly medicated. Emma was depressed, extremely anxious, and unable to sleep or keep still. But what really began to hit home almost immediately was that Emma was demented, and she was getting worse by the day.
At this point, Emma’s short-term memory is almost nonexistent. She may forget something you told her five minutes ago. Her brain may “translate” what you said so that it has another meaning. And emotionally, she is more like a small child than an adult: everything becomes personal.
For example, Emma may say that she’d like to have hummus. Her sister will say, “I like to make hummus myself, because it’s a lot cheaper.” In Emma’s mind, this becomes, “I can’t have hummus because it’s too expensive.” As the dementia takes hold, paranoia sets in, and she regards her loved ones with suspicion. If she feels thwarted, we are to blame. We have become like parents.
Emma’s take on reality has also changed. I picked a variety of clothes from her closet in Colorado and drove them to Oregon, with some of her other things. Half of those clothes, she says, are not hers. “Well, this fits me,” she might say. “But it’s not mine.”
In addition to her house (which we are selling) and her career, Emma has also lost all but two of her dogs. We are caring for them, too, but her demeanor toward them has changed. She stopped sleeping with them because they keep her awake. She is unable to feed them reliably (she forgets, or she overfeeds). Sometimes, when they come to her for attention, she pushes them away. She kicks our dog. All of this is out of character. Her personality has changed.
We have been working to move Emma to an assisted care facility — one which specializes in memory care. It’s a nice place, and she picked it herself. Part of her is ready to go, and part of her is resistant. On days when we plan to go for a tour, or to sign paperwork, she wakes up and decides she needs to go to the ER for mostly benign reasons. This is a subconscious avoidance response. Think of a toddler who doesn’t want to do something. This is the dementing adult version of that.
True to my previous experience with demented adults (I did some hospice volunteering a few years ago), the past becomes present again. Emma has no reliable short-term memory, but she can remember the long past of decades ago. And she remembers events from that past as though they occurred yesterday, or are still occurring. Emotional wounds, perhaps once healed, become fresh again. Old grievances have new life. And like a child, all of her emotions are projected onto the people closest to her: us.
If we had to do all of this legwork ourselves, we would be crazy. Fortunately, we have aging advisors helping us to facilitate her move. They have connected her with services we didn’t even know about, such as caregivers who will take her shopping. They will take her to doctor appointments, which is no small task: she becomes hyper-anxious and may go to the bathroom a dozen times in 20 minutes. And they helped facilitate her move to a place that will provide better care and quality of life than we could possibly provide — and it will preserve our sanity, too.
Emma lost a lot when she had her strokes. And in the two months since she’s been with us, our lives have also been overturned. Nearly every waking minute of our day is Emma-centered to some degree. She is frail, and she is very needy. We have had little time together as a family. It’s been hard to give our children the attention they deserve because we have the equivalent of a toddler now, in terms of care. Nothing about this is easy. Nothing about this is fun. But at least now there’s a light at the end of the tunnel. Her life will improve, as will ours. She will remain nearby, not several states away, so that we can see her and bring her to the house for dinner occasionally. As the social worker put it, “Then you can be sisters again,” rather than caretakers. We’re looking forward to that.
Emma’s radical change of life could happen to anyone. She has the resources for her care, but so many people do not. So many caregivers are struggling, too. This isn’t an individual problem; it’s a societal problem. Disabled, sick, and elderly people are not refuse, to be tossed when they can no longer fuel the capitalist engine. We need to do better. Because one day, it could be you who needs compassionate care.