I wrote a piece for The Flounce the other day about helping friends and loved ones in crisis. Kind of a “what not to say” thing. I’m only a year out from no longer being an in-house primary caregiver, so the feelings there are still very fresh, perhaps to the point of misinterpretation.
We went to visit my mother-in-law yesterday. She has her “lively” days, and this was not one of them. She wasn’t depressed or despondent (she seldom is, and we’ve found that it’s still fairly easy to redirect her when she does become upset), but she was listless. She was sitting in the “quiet room” when we got there, napping in one of the wingback chairs, but woke up when we said her name.
What was it like? It was like interacting with a sleepy toddler. She sat in the chair, kind of cooing and babbling.
Occasionally she can eke out a partial sentence that seems like it’s going somewhere, but then it fades off into more gibberish. There are no real conversations. We can ask her how she’s doing, and sometimes she’ll remember to say “Fine.” But mostly it’s acknowledging whatever she’s saying, and not trying too hard to decipher it all. She seems contented with almost mimicking the back-and-forth of a conversation: saying something and awaiting a response. Yesterday, though, her cadence was very sing-song, like a small child consoling itself at bedtime.
Eventually, I handed her a throw pillow to fuss with, as this tends to trigger the need to tidy something, which in turn makes her a tiny bit more lucid. She stroked at it and made little furtive scratching motions on the embroidered side. She managed to do a number on several pieces of furniture that way, back when she was still in the house with us. She’d rub and rub at imaginary spots until it left divots on her coffee and dining room tables. We couldn’t salvage the coffee table in the end, but did save the dining room set. In the quiet room, there’s usually a basket of towels for someone to fold, or a box filled with sand and small plastic objects, to satisfy the urge to do repetitive tasks. I think these things must have been moved to one of the activity rooms; yesterday there were just the big leather chairs and a little white noise machine. I digress.
When we go visit, we usually pass several folks who live in the regular assisted living community, sunning themselves in Adirondack chairs or reading. The ladies are always dressed to the nines in bright colors and accessories. And I never see them without lipstick. They are fabulous. They are always happy to greet and be greeted.
I love passing them on the way in and out, but this is also painful. There are no guarantees in this life. Some of us will get to be fabulous old ladies, like my own mother, who doesn’t dare leave the house without her giant Dolce & Gabbana sunglasses that she found at a flea market.
My mother is a fabulous old lady. My mother-in-law has been essentially infantilized by her own brain.
It angers me that she’s been cheated out of being as fabulous as I know she could have been. She’s broken most of the great costume jewelry necklaces I packed for her last summer, or twisted them the around the Lladro figurines I put in her room, creating strange little works of art that make sense to no one but her. She still gets her hair and nails done (there’s a little salon on her floor called “A Cut Above”), and when she’s freshly coiffed, she looks like she could say, “Get me the hell out of this place and let’s go to Rockport.” Instead she smiles beatifically and says, “Flibberty jipsum on the mo mo mah mah mah.”
So I leave after every visit with a heaviness that’s different from when I was with her every day. It’s a combination of remorse and relief. I know that I cannot do for her what the staff can. Every morning and every evening took everything that I had, mentally and emotionally. Getting her dressed. Getting her clean. The nightly ritual of lowering all the blinds and turning off lights so that something in her mind would kick in and she’d know it was time for bed. Fighting her over taking a bath, or even getting her to agree to a once-over with a washing mitt. Keeping her from dismantling another appliance. Keeping her out of danger. That’s no longer on my daily to-do list, and I’m grateful. But my own shortcomings were such that we had to move her out of her home. I still feel guilty about this.
I leave feeling such sorrow for her, and everything that’s she’s lost. What’s fair about any of this? I talk to others who are dealing with sick parents. Sometimes you find yourself comparing your situation to another’s. “It’s worse for my dad, because he knows he’s dying.” “It’s worse for my mom, because she’s losing her mind.” The thing is – it’s ALL watching someone deteriorate. It’s ALL confronting mortality and frailty. There’s no comparison. There’s only grief.
I feel so hopeless sometimes. As much as I appreciate my life as it is right now – living in a house I’m happy to come home to, with neighbors who are engaging and funny and kind – it came at a cost. My faith in any sort of a just and concerned Universe/Higher Power/Flying Spaghetti Monster has been shaken to its core. I don’t know what or who I’m praying to, and I’m simply not at the point where I can accept entropy, or nothingness. I can’t make sense of any of this.
So I write. I talk to other people going through similar situations. There’s comfort in the similarities (“Your mother hoards paper towels? MINE DOES TOO!”). I wonder if some become sick because others need perspective, or more contact. I flail about for the right words to describe it all, hoping that in re-reading, it will make sense. I’m re-reading this now; it’s all over the goddamn place. It doesn’t matter. This is life in the shadow of illness sometimes: grasping at reason.