Every day now my mother comes (shuffling hesitantly) upstairs from her ground-level apartment to my study on the top of our 4-level split to tell me that her brain isn’t working. This involves some form of her hands spinning at the side of her head in the nearly universal sign for “crazy.” She’s not crazy, but she’s not okay.
For years now I’ve been trying to get her to just call me on her cell when she needs me or needs to talk to me. I guess that the fact that she couldn’t remember to do that 3 years ago was one of the early warning signs of what was going on in her brain. But she has 40+ years of skills around pretending that she doesn’t have MS, and she masked the decline. Sort of. Or we just didn’t want to see—more likely.
When she moved in with us 11 years ago, her new neurologist told her that the scarring visible on her MRI was severe enough that she shouldn’t have been able to walk or talk. At that point she was still doing both with only slight wobbles, as well as driving safely. So she has a history of over-riding her disease. And we all coasted along pretty well until about a year ago, when words started to disappear from her head with great frequency, and she started bumping the other cars in the driveway.
So, okay. I convinced her to surrender her license fairly easily by reminding her that her driving was putting other people’s great grandsons at risk (her g-g-son is the core and light of her life). And my husband simply started counting up her points for her in their daily Rummy game. We all talked about the changes we were watching and started being a bit more vigilant. But there was still some denial—at least on my part. My husband and my daughters seemed to be more aware than I was—or more willing to acknowledge what was going on.
Then, this spring, she got pneumonia that went septic (spread to the bloodstream). At 97 lbs, she doesn’t have much to fight off an infection with, but she did—mostly, I suspect, because while she was in the hospital with the pneumonia, our elder daughter was in the last stages of her second pregnancy and my mother was NOT going to miss that baby. Then, in post-hospital rehab, she got C-Dif, which is justly notorious for taking out whole wings of nursing homes. But the second of the two antibiotics that will touch it worked, amazingly.
I brought her home mid-way through the C-Dif in order to lower the risk of another opportunistic infection finding a home in her teeny self, and we had visiting nurses until she was clear. Now we have a couple of hours a day of in-home help—it makes a huge difference to have someone coming in the mornings most days of the week to do breakfast and a walk and maybe a drive to look at scenery. All this is now necessary because, although she gutted through two killer infections, my mother did not come home with her brain intact. The dementia that had been creeping up on her already scarred brain got a serious foothold while she was sick. She came home confused and needy and sad.
But we got settled into the new routine. Into the “new normal”—a phrase I have always hated, but have come to appreciate in the past 6 months. And we needed a break. So we took her back to the nursing home (not in the nursing ward) for a week of respite care, and headed off to Maine, where we ate a lot of lobster and a great many blueberries, slept, took long walks, and just generally rested our brains and spirits.
I’m pretty sure that nothing went wrong at the nursing home—both daughters were there several times during the week, as well as our lovely rector. But mid-week, her cognition took another tectonic slip. The nursing home checked for a UTI (a perpetual problem for late-stage MS patients), but no medical reason presented itself. When we got home I took her to see her doctor, who offered to do bloodtests in an “if that would make you feel any better…” voice. We exchanged a long look and I declined.
She’s just going. And every time she makes the “crazy” gesture, I want to scream, or punch something hard, or run away, or vomit until I can’t breathe. I want to find some way to pull the spike out of my heart, because that’s what that gesture feels like.
I thought it was just me, but my younger daughter carefully asked me the other day whether it was weird that that gesture makes her feel so wildly, desperately sad and angry.
This morning I (gently, very gently) asked my mother what she wanted she wanted me to do in response to that announcement. She said she just wants me to understand.
I am nearly 60 years old. My mother is 80. I was an only child who grew up in the midst of a 23-year marriage that was a battlefield for 22 years. My parents were a pair of starving alpha dogs and I was the last rabbit on the planet. For my mother, I was haven and bliss and weapon and succor and hope. According to her, I am her greatest achievement.
I have spent many years in therapy learning to make boundaries around myself—learning to be separate from my mother. She has gently-but-implacably fought me for every inch of psychic territory. And I learned, eventually, to make and maintain those boundaries in a variety of ways that did not require her
consent or participation. It has not always been pretty, but it’s worked, even with her living in my house. Nonetheless, we are maybe a little extra entwined, interlaced, woven, knotted. Clotted, infested, enmeshed, fused.
I’d really love to say something profound and enlightening here, but the truth is that there is nothing enlightening to say about this. And the situation itself is so profound that it certainly doesn’t need any analysis from me. And I don’t really want any insights now; I just want this to effing stop because I couldn’t possibly scream/cry/vomit/punch my way to the bottom of what it feels like when she tells me that she can’t remember what comes after taking off your shirt, or what you do when someone hands you your dinner, or when it becomes clear to everyone in the room that she can’t remember her 3-month old great-grand-daughter’s name. Or when she can’t remember her 3-year old great-grandson’s name. Or when she makes that gesture. I wonder how many times I can die, how many times my heart can shred or shatter before she’s gone. I wonder how I can bear the simple, brutal facts of not being able to do anything, and of not being able to know anything. I wonder these things every day even as I am deeply aware of and grateful for my exceptional family support, godsend of a therapist, and blessed church community. There’s money enough for whatever needs to happen, I think, provided that things don’t go on too long. All of that helps. But only up to a point.
I am not conflicted in the sense of switching back and forth between two strong, but partial emotions. At any given point in the day I am 100% frantic about who I’ll be when my mother leaves the planet and desperate to have her be better, and 100% hoping that the next time I go check on her, she’s gone, and 100% lividly angry that I am having to handle/manage/experience this, and 100% just bloody sad. It feels a little like having your head filled with Genghis Khan’s entire galloping, sword-swinging army all the time.
The only thing worse would be if I thought I was special. At any given point, there are hundreds of thousands of us walking around with this particular razor-filled stew of anguish and anger and grief and horror and love in our heads. It’s amazing that the earth doesn’t just crack apart.