Tag Archives: Writing about caregiving

A room of my own?

8 Replies

The New Year has certainly brought its challenges. I planned on a slow start. That way, I’d have lots of time for the next steps of my new book, The Promise of Women’s Boxing, set to be published in June.

What I got was my second bout of COVID-19, and worst of all, Jed came down with it. Sure, there was sneezing, coughing, fever, headache, and some GI discomfort, but for Jed, there was also a sudden wave of confusion that was scary for both of us.

He quickly went on a course of Paxlovid to try to squelch the illness as quickly as possible, and for me, a turn in Izzi’s old room, where I’d set up my work area but now, a bedroom of sorts to make sure my non-stop coughing didn’t disturb Jed.

What I didn’t expect was a night of calm sleep.

Yes, I still responded to the sounds of Jed in the night. Even mopping up the floor where he’d had an accident, a feature of his COVID-19 response. But my time alone in what had been Izzi’s room was a respite of sorts. Time alone to drift. To sleep. To not sleep. To be fitful. All the moments that one has, but unscrutinized and interrogated. I was not awakened in the middle of the night; not plagued by my caregiver’s grumpiness at never having a break.

I’ve written about a caregiver’s need for self-care. Putting that into action is something else again. For me, it’s been a combination of claiming space to write a book, to go to the gym, to sit in a drift in a cafe when I have respite care from Jed’s companions Lynn or Maya, or some other action. But I admit to its being fleeting at times, and as Jed’s illness moves forward as an inevitability, I’ve come to learn that those moments to oneself become more and more a required feature of day-to-day life, any guilt about it be damned.

I also admit that it is unsettling at times. As Jed’s ability to recall who I am or whether we are actually married or not becomes a fact of our lives together, the notion of a shared room recedes as well. And yet he’ll ask, “Where are you sleeping?” Feeling his way to a past where we’d never have slept apart.

In those moments, I feel a shattering loss.

An echo of what was.

And there is a grief in life that can become so great that receding into Izzi’s old room becomes my only defense against a sense of utter devastation.

So now, Izzi’s old room is my room. The place where I climb into my bed at night, having firmly wished Jed a good night at the end of our evening routine of washing up, brushing teeth, and turning out the lights.

 

 

 

The moments I’m not prepared for

14 Replies

Mount Everest, Photo credit: The Tribune, India

Caregiving for a person who is losing themselves is the Mount Everest of experiences. One puts one foot in front of the other for some sort of forward momentum, but without really looking too far ahead. To do so is to risk one’s own break down and that plaintive, wistful, despairing question, “how can I do this?”.

As I ponder it all, I’m realizing the moments I’m not prepared for seems to be a growing list. This morning, Jed asked, “Who are you?” and I really didn’t know where to go from there.

I smiled.

Sweetly.

In the moment.

Said, “I am Malissa,” paused and added “we are married.”

Jed said, “I don’t remember things.”

He then smiled and said, “well Sheila, how are you!”

Now that was typical Jed. A moment of clarity in his fog of a mind, covering his sense of embarrassment at not being on top of things and making a joke of it all. We carried on with the Sheila joke for a bit before focusing on breakfast: a toasted slice of leftover cranberry walnut bread, our Christmas morning family tradition for years. He said, “hmmm, this tastes good, where did you get it?”

I explained, the Christmas morning stuff and he looked at me with wide eyes and a big smile and said, “you made this? It’s delicious.”

And so it went. Through breakfast. Through discussions about haircuts. Showering. the scabs on his arms and upper body from his newly acquired OCD habit of scratching and picking.

And no, none of it is ever something I thought of. I mean, really, who does? At our age, one thinks of the bad luck of cancers or heart aliments, diabetes or COPD from all the smoking we did as kids, but something that slowly erodes one’s ability to think or even recognize or put words to the people they know and love? No. Believe me. You don’t think of it. Not even if it is all around you, never for your own spouse or loved one.

As I write this, we’ve conquered the confusion of waking up and not being able to understand the most basic of things. Slowly though, I am watching as cognition returns. Yes. Morning meds and vitamins. A shower (no fight about it either), shaving using his electric razor, putting on spanking new duds from his Christmas haul. A pet to our kitty Mimi who is on her last legs from chronic liver failure. Sweet words to me about how much he loves me. Appreciates me. More talk about getting a haircut. And then an actual walk, our first in almost two weeks since he accompanied me to the Post Office to pick up stamps.

All went well, but the haircut didn’t happen. We lost the window, too soon when he turned from our apartment house entry way and too late when we passed it on the way home.

Walks are in fact, really tiring both physically and mentally, even our very short ones. He becomes overstimulated by the sights and sounds. People on the street. Noise. Shops. And today from wandering around the first floor of Barnes and Noble, the colors of the fruit stand, the plants and trees lining the brownstones on Clinton Street. And needing to stop as well. The sweat beading on his forehead, needing to catch his breath, this from the man who has circumnavigated Manhattan at night in a kayak by himself and written about it for a Weekend Warrior column in the NY Times.

Once upstairs, he remembered about the haircut. “Maybe tomorrow,” he said. He had to go to bed, to drift for a while in the darkened room with drawn curtains and to eventually asleep.

Meanwhile my day. Yay to getting my delivery of Covid home tests after a pre-Christmas frantic search of medical supply companies on the internet. Yes to laundry, churning its way through rinse cycles and the dryer. Yes to a quick text touchpoint with my daughter. Yes to realizing just how overwhelmed I feel — and to the bits of tears in my eyes as I blink my way through a minute or two of silent meditation to keep myself together for the next steps of the day.

If yesterday morning was self-care at Gleason’s Gym, today, through chores (garbage out, laundry, vacuuming), I’m giving myself the sense of order externally. Sure, not spanking clean, but at least with some of the holiday disorder at bay.

And then I locate myself again. Clear my mind, breathe, inhale, exhale, and start it again. This is the way.

****

For more information about dementia and caregiving resources here are some helpful links in NYC as well as two of the main national organizations. And of course, always feel free to contact me.

CaringKind is a caregiver organization in NYC with remarkable resources, courses, caregiver groups, and other information. Link here: Caring Kind.

NYU Family Support Center has programs for caregivers to include a fully array of “zoom” meetings that range from looking at art with museum curators to music and caregiver “KaffeeKlastch” meetings. Link here:  NYU Family Support Center.

Alzheimer’s Association, website for information and resources for this disease. Link here: Alzheimer’s Association.

The Association for Frontotemperal Degeneration, website for information and resources for this disease. Link here: AFTD