Tag Archives: FTD

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.

 

 

 

 

 

The moments I’m not prepared for

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

Getting it wrong to get it right

December Roses, Juneteenth Walk, Cadman Plaza Park, Brooklyn

December roses, Juneteenth Walk, Cadman Plaza Park, Brooklyn

I’ve been having that sort of week.

Really from last week till now. Forgetting to put stamps on letters. Referring to the wrong person in an email. Fretting as Izzi waits for another round of Covid tests because more of her co-workers have tested positive.

And sleep has been an on again, off again thing too. Drifting into a nap in front of the TV for 40 minutes during the boring parts of a boxing undercard and then not falling asleep till 4:30 in the morning.

Last night was so ridiculous.

I just gave up at about 3:00 AM, showered, and began making the dough for the cream cheese rugelach with apricot jam and walnuts I’m baking as part of my holiday array of goodies. Dough made and put into the refrigerator to rest, I didn’t fall sleep again till around 5:30 AM. I’m just chocking last night up to the winter solstice, with the notion that my body just wanted to get a jump start on the the longer days to come.

But I also know something else is going on. That the working from up in my chest rather than the sense of being rooted onto the earth is the sure knowledge that things are off kilter in my sense of being.

Scratching it further I’m having to ask myself what underlies it all.

Holidays?

The Omicron-variant doubling the cases of Covid in NYC everyday?

Line for Covid testing, Astoria, December 22, 2021 (Photo Credit: Izzi Stevenson)

Jed’s forgetting who Izzi was last week?

Cheng Man-ching

Not putting in the time to take care of the things I’ve committed to? I mean really, I have to ask myself, why is it I haven’t actually performed the Cheng Man-ching 37-move Tai Chi form since my last zoom class ended a few weeks ago?

It may remain a mystery of sorts and not having a particular insight into things can be something we just shrug our shoulders about and let go from time to time.

But I tried the exercise on Monday without even realizing it. Somewhere into my tenth round at Gleason’s Gym I let the flow of things unfold as I threw jabs and straight rights at the double-end bag. Somewhere around the 14th round I realized I did not feel constricted by striving for perfection. I was in the moment. Up on my toes. Flicking punches as I moved from side to side.

Just doing that reminded me that not every action has to be a home run. After all, a baseball player with a 350 batting average is considered at the top of the game. If a 1,000 is perfect … well, you get what I mean.

So that’s been my message to myself. I don’t always have to swing for the fences. And if I get it wrong, well, make up for it. Have the sense to sink down a little lower next time. Feel the power of the moment not as that huge mountain to climb, but as part of the flow.

Sometimes just getting a few hours of something, however fleeting, can be enough. And yeah, smell the roses.

Getting sick … the return

Sick bedI have been laid out flat with laryngitis, fever, a rib flailing cough, and all the misery of a GERD flare. Not to mention sore muscles from nights on the couch because my wracking cough shatters the calm of my husband’s sleep and sense of well being.

Okay. Enough with the complaining, right? I do, after all, mostly have my voice back, and, thanks to a plethora of drugs to include an inhaler, cough medicine (three tries till I could find the one that worked–Mucinex, the honey flavored one), antihistamines, massive doses of PPIs to stop the stomach acid, Tylenol for the first few days to stop the razor blades in my throat feeling, cough drops, which I stopped, because they exacerbated the GERD/Laryngopharyngeal Reflux Disease, and my lovely daughter’s TLC who came to stay for a couple of days, ostensibly to ensure that husband was okay, but worriedly keeping an eye on me, having already sent a humidifier via Amazon prime. Meanwhile, she’d slipped and fell and cracked the radial head of her elbow the night of her 22nd birthday, the same day I came down with the dreaded “L”.

My what a bunch my family is.

So now that I am taking a reasonably deep breath without a hacking exhale, I’m trying to put some perspective to all of this, admittedly a bit drugged up from the steroid in the inhaler and whatever cocktail of ingredients is in the cough medicine.

Still. In the throes of sudden vulnerability. Of coughing so hard I couldn’t breathe. Of fearing Covid for the first couple of days, even though I’d just had the third booster and knew the symptoms were for a different sort of virus. Of realizing that life is so fleeting and that I am so unprepared for its end. I mean, yes. I have wills and powers of attorney and that sort of stuff, but everything else is so messy and in the middle. It’s like my desk. I know where things are, but looking at it from an outsiders point of view. Where to start? How to fathom it all? How could I leave my daughter and my husband with this? And in particular, my husband? My beautiful Jed with short term memory so fleeting that he asks the same question 4-5 times before he figures out from a cue on my face that he’d asked it already.

A caregiver’s dilemma is always one of balancing the self with the non-self.

Self says, “hey, it’s my life, I do whatever I want. So what if there are unpaid bills? Or if I didn’t send in the signatures for the new account? Or even the latest round of retirement forms?”

Non-self doesn’t even say. Non-self is there soundlessly. A support bed of soft puffy clouds. A hand guiding without ever telling. A hand that gives full agency to the other. Allows them to find their way to the shower on their own to scrub the days of not showering off their body.  And doesn’t worry. Doesn’t feel wrecked inside at week two of not getting out of his pajamas.

Purple bootsOkay so I am in the throes of a lot of mixed stuff here. Me with laryngitis and me as a caregiver and me as a recently retired person trying to find her way and me as a 67 year old facing the fact that I don’t bounce back as quickly as I used to and me as a lot of other things I haven’t even figured out yet.

Meanwhile, I bought a pair of purple boots and are they ever cute.

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/