Tag Archive for: Alzheimer’s disease

I fixed the salt cellar this morning. It wasn’t terribly
complicated, but it took a little bit of ingenuity and some focus and a real
desire to have it fixed. I made it last year at one of those paint-your-own-ceramic
workshops. Eve and I were having a mom-daughter day and I decided the last
thing our cupboards needed was another coffee mug, so I chose this ceramic salt
container with a rubber flange on the lid to keep it air tight and Eve pronounced it “cute,” which is an enormous compliment coming from a 16-year old
girl who is your daughter.
It lasted about a week
before the wooden lid came loose from the part with the rubber seal and Lola decided shove it farther down inside rather than trying to pry it loose. This
resulted in the container being full of salt beneath part of the lid that was
firmly stuck halfway down, and no way to remove it. We left it like that for
months, filling the upper part of the container with salt and calling it good.
But this morning as I
stood over a pan of hash browns, imagining what it is going to be like to pack
Mom’s stuff up and move her to memory care in the next week or so, I took on a
project I thought I could fix. As tears tracked slowly down my cheeks, I
contemplated what it would take to pry the lid out. I started by running a
sharp knife around the edge of the rubber, hoping to ease it loose, but abandoned
that after imagining the knife slipping out and slicing my finger. Next, I got
a corkscrew and tried to drive it into the center of the wood to get ahold of
it and lift up, but the wood was too dense. When I went to the junk drawer to
get a screwdriver and screw, I heard Dad’s voice in my head, telling me this
was the ticket.
I screwed it in until
it just took hold and then grabbed the vice grips, stopping for a second to
wonder how many other households have a pair of vice grips in the kitchen drawer
and mentally patting myself on the back for my cleverness. I clamped them over
the top of the screw and gently rocked the vice grips back and forth until the
lid slid up and out.
I flipped Eve’s hash
browns to crisp up on the other side, put the tools away and grabbed the
superglue. Within minutes, the potatoes were on a plate and the two halves of
the lid were tightly bonded back together. I washed out the salt cellar, refilled
it with fresh salt, and wiped down the counter.

When Eve came in to
eat, she opened it up, pinched out a bit of salt, and sprinkled it on her
potatoes. She didn’t even notice that it was fixed. Par for the course with a
teenager in the morning, I suppose, but it didn’t diminish either my sense of
pride or the immense feeling of relief I had that I had found something I could
accomplish today.

I had thought that, since I lost one parent already, there would be a sense of familiarity, of deja vu, of “been there, done that” when I lost the next one. Not in a dismissive way, just an “ok, I’ve got this, I know what to expect” kind of way.

Nope.

Dad was diagnosed with lung cancer. He told me early on, I was there to listen, I went down when he had surgery to remove part of his left lung and some lymph nodes, I let him bounce ideas off of me for future treatments. We weren’t certain of the timeline, but we knew he was sick and he was absolutely honest with me about how sick he was. It was excoriatingly, skin-flayingly, teeth-grindingly painful in the last week to watch him suffer. He knew me until the minute he died in my arms.

But Alzheimer’s or dementia or whatever the hell this is that Mom has is a completely different animal. She isn’t having some diseased cells cut away. She isn’t calling me to tell me about the latest drugs or therapies her doctor has offered. She might live for six months or six years. She has no idea who I am.

This one-sided relationship is teeth-grindingly painful in a completely different way. When Dad took a turn for the worse, it was obvious. Over a period of several days, he began having pain in his legs and hips and when they took x-rays it was clear that the cancer had spread to his bones. An MRI showed it was in his brain, too – the cancer cells lit up like the night sky I once saw in the middle of nowhere, New Mexico. From that point forward, we knew there was no rallying, no bouncing back.

Mom’s slide has been gradual except when it seems to leap forward, and there have been many times over the last year when she was almost able to snap out of it and recognize me and have a conversation. The cruelest part of that is that it gave me hope. It made me wonder how we could capture those lucid moments and prolong them, whether there was some magical drug that she could take that would clear the way for a return to herself. Those moments, when they are gone, are all I can hope for and envision, but they are much fewer and farther between and I know I won’t get a signal that tells me I’ve seen the last one. I didn’t get a sign the last time I spoke to Mom on the phone that said it wouldn’t happen again. I didn’t get a warning the last time she called me by name and knew I was her daughter so that I could savor it.

There is a part of me that wonders if I am a little bit narcissistic in my grief. A part that thinks maybe it shouldn’t matter so much whether she knows who I am, that tells me to just get on with caring for her the best way I know how without worrying whether she remembers I’m hers. Because somehow, I want to be special. I don’t want to be just one of another cast of characters who comes through to visit and smile at her. I want to be her daughter, not for any sort of recognition of my efforts, but because I mean something more. There is something about the reciprocity of a loving relationship that makes it feel whole. When I sat with Dad during his last days, holding his hand and telling him stories, even though he couldn’t speak, there was a familiarity. He squeezed my hand and his eyes danced during the funny parts, and his rough, calloused thumb rubbed back and forth against mine when I was being serious. We had a history that was fully intact until the moment he took his last breath and when I grieved for him, I grieved for all of it simultaneously, the loss of his body, his Self, and our relationship.

This time, I am grieving in stages. While there are parts of Mom’s Self that are still fully intact – her sarcasm and playfulness comes out sometimes with her husband – I have lost the history of our relationship as mother and daughter. She knows I am familiar, but she doesn’t know why. Our inside jokes now belong to me, even though she is physically still here. When we sit together, I can’t tell her stories about my kids or my husband because it confuses her – she doesn’t know these people, why am I talking about them? We can’t reminisce or look forward to sharing family holidays together or significant moments in the future because she isn’t coming to my girls’ high school graduations or weddings. There is a quality of suspended animation to it all, a sense that I am walking without a foundation beneath me.

I wish I had a succinct ending to this post. I usually am able to close the loop with some sort of insight, but maybe the fact that I can’t this time is an apt metaphor for how all of this feels right now – loose and unfinished.