Tag Archives: Dementia

Now what?

Okay. So Covid done and dusted. More or less. Still some dregs left. Like the leavings of coffee. Unpalatable but there to be dealt with.

Coming out of my cave, I walked into the cold temperatures of mid-January. Hurriedly paying monthly bills before due dates (those that aren’t automatically deducted), futzing with the plants that needed attending to, making a Trader Joe’s run, plus the hunt for more cans of grilled Fancy Feast cat food — a challenge as cat food seems to on the list of supply chain problem children.

And me. Still no gym (waiting for the dregs to leave). Trying to catch up on writing projects, which is slow going. Figuring out sleep patterns. Avoiding the heavy duty vacuuming that needs to be done. Chores and more chores interspersed with the things that keep me going.

Waking up to find that its January 13th is also to realize I missed the boat on New Year’s and things like New Year’s resolutions.

That was always such a thing. The short list of must-dos for the following year or at any rate, for the month of January into February, when it all felt so fresh.

List items such as: I will write every morning for 30 minutes, or I will practice yoga from 5:30 AM – 6:00 AM for 40 days, kind of my own personal Lent, if I were actually Catholic, but more to the point, liking the ring to the 40 days part of it. 

The truth is I don’t have the heart for it other than to say I want to wake up without worrying.

And maybe that’s a bit whiny. In fact it is. No mistaking it because I’m living a remarkable life. And what worries do I really have? Sure, Jed’s illness, but we have it covered, more or less. We have a lovely place to live. Food on the table. Medical folks who respond when I call. Pensions and health care and social security and a bit in the bank. Isn’t that enough?

So If I land on anything, it’s to say find joy. Live joy. Be joyful. The alternative is like the dregs … nothing we should have to use to define who and what we are.

Just joy.

 

 

 

 

 

Caregiving and the holidays …

Greek Kourembiedes CookiesFor many Americans, the period from Thanksgiving through the New Year is fraught with tensions and anxieties, coupled with moments of exuberance and joy. if you are a caregiver, it can add yet another level of complexity in the ever evolving landscape of illness whether physical or lodged in the recesses of the brain.

I will say things have been fairly smooth so far and actually seemingly less fraught than prior years because the fact is so much of our lives is now lived in the moment. After all, when one’s loved one can’t really remember that tomorrow’s Thanksgiving, or even what Thanksgiving is, the celebration gets quite easy. So my daughter and I set it up such that we’d spend lunch with my sister and other members of our family, and afterwards came home to celebrate “Thanksgiving” with Jed.  Thanksgiving 2021It was fairly simple, consisting of his favorite roasted veggies, a lovely dressing, fresh orange cranberry relish plus a yummy French Apple Cake and voila, we were done. No fuss, no muss. And no hurt feelings because Izzi and I had spent part of the day with my sister.

Our six-week run usually consists of Thanksgiving, the anniversary of when Jed and I met, his birthday, Hanukkah, Christmas, and New Year’s.As it happened December 6th marked 25 years since Jed and I first got together.

I admit to sadness at the fact that he didn’t really understand it, but did enjoy the pizza I brought in and otherwise marked it in my own way.

And no. No stroll through Tribeca to Puffy’s on Hudson and Harrison where we met, or any particular reminiscence, though he did recall that I’d gone there with two of my oldest friends. Still, it remains wistful. Speaking of another place and time where our senses had felt so heightened and together.

His birthday comes up next … which will also be low key no doubt. Yes to family cake and a visit from Izzi, plus a few presents, but it doesn’t really register, except as a big surprise each time I bring it up.

As for the rest … well, Hanukkah has come and gone, along with a wonderful visit from Jed’s oldest friend. And after Jed’s birthday, we’ll have Christmas, and maybe even a small tree because he seems to associate it, and then lovely chocolate truffles and a split of champaign for New Year’s Eve.

The lesson of it all to myself is to remain in the moment.Boxing at Gleason's Gym

To stay calm.

To give myself the self care I need to feel contained whether that means ensuring I get to Gleason’s Gym to box or to take an hour to sit in the cafe across the street tarrying over a cappuccino as I write in my journal.

And yes, I’m making the events as special as I can, without overtaxing myself or attaching to the idea that it will remain as “that time at Christmas when …” because, the fact is he won’t particularly remember.

The best I can ask for is see to his sense of happiness from moment to moment. And really, what better gift is there than that.

And please, if you are caring for a loved one … know that you are not alone and can always, always reach out.

And continue to box …

I am in week 19 of my campaign back to physical fitness at Brooklyn’s Gleason’s Gym after a long pandemic induced hiatus — and wow do I need it.

Okay, yes, the COVID-19 pounds.

The stress of the on-going pandemic. 

A plethora of incredible change in my life like retirement and my daughter graduating college and moving into her first apartment.

But it’s also the stress of seeing my husband living with a degenerative brain disease. Called Frontotemporal Degeneration or FTD, it saps the frontal and temporal lobes of the brain in particular, affecting behavior, language, or movement, and as the disease progresses short-term memory. The horror of it is its insidious onset usually starts at an earlier age–and progresses relentlessly with no known treatments that stop or slow the disease.

Far from wanting a pity party, the infusion of whatever self-care I can muster, including the opportunity to get down to the gym to work out is the best present I can ever give myself.  

Beginning with my 15 minute or so walk to the gym, I begin to destress, thinking of all the things I want to work on for that day. From “keeping it neat” to quote trainer, Don Saxby, to working the counter shots to the body that I practice on the focus pads with my trainer Lennox Blackmoore

Lately, it’s been about the telephone–keeping my hands up like earmuffs to not only protect my head, but to better position myself for throwing what ever punches are called or when working the bag to practice neat and tight jabs, rights, hooks and upper cuts.

I’m also working on stamina ’cause at 67 and having not exercised for the better part of a year, whatever fitness I had went out as the calories packed on.  

But mostly, going to Gleason’s Gym connects me to the larger community that is boxing from the camaraderie of what I call the #AMBoxingCrew to knowing that just by being there I am supporting the efforts of others. 

Boxing has been a part of my life for 25 years. It is has given me strength, health, the sense of my own place in the world, and ultimately the courage to move forward no matter what the obstacles are. It’s also uncaged my sense of being and though I may try to give back through my support of women’s boxing, it always seems that I am on the receiving end of the brilliance that is the sport.

And so, I continue to box … for what I can only hope will be the next 25 years.

___

For further information on FTD, I recommend The Association for Frontotemporal Degeneration:

http://www.theaftd.org/