Tag Archives: AFTD

Of caregiving and caregivers

I will admit the notion of bringing in a companion / caregiver had been and still is daunting. As seemingly social as I may be, the die-hard New Yorker in me is loathe with a capital “L” to expose myself. After all, generations of New Yorkers have lived in tiny overstuffed apartments with doors that never open more than a few inches when someone knocks on the door. Why else constantly live life in cafes, bars, and restaurants? Right? We can just as easily have “at-home” dinner parties, but seem to prefer keeping our real selves, messy desks, unmade beds, and all, to our selves. It’s how we roll, and how we live, and our preferred state with out prying eyes and the “tsk, tsk, tsk” of disapproval. Of course, once one has kids, the calculus changes a bit. The living room, kitchen and bathroom do become public as well as any rooms where kids sleep and play. But one’s own bedroom remains a sanctum free of intrusion.

But really, I am indulging in a tangent, when it’s something closer to my own sense of failure at not being the end-all of caregivers. Admittedly I am much better at it than my housekeeping, but the nagging sense that I am not doing enough does punch through. And yes. It’s ridiculous, but who ever said that being human is anything other than a silly state of affairs.

The real truth is, at this stage of unrelenting progression, having a companion caregiver to augment care is absolutely the right call. One cannot be all things and the stimulation provided by another is extremely helpful. Sure, routine is good and important, but so is changing things up a bit. Forcing conversation. Another view of the world. And a new paradigm of routine that includes the companionship of others on a regular basis.

Having crossed that divide some months ago, I’ve come to depend upon the twice-weekly time Jed spends with his companion caregiver. As much for him as for myself, it gives me some relief and the chance to hang the “gone fishing” sign for a few hours.

What I hadn’t prepared for is what happens when that is disrupted whether through illness or other changes. In our case, our caregiver became ill with COVID. She is okay, but was out for three weeks. That change, aside from worrying about her health, also meant that Jed’s world became confused — and truthfully, it set him back a bit.

After my day or two of self-recrimination (hey, see the human thing above), I started reaching out to find some alternates. That in itself has been daunting, but I have been been meeting some fascinating people along this new journey of discovery: the remarkable world of New Yorkers interested in providing friendship to a challenged person.

I’m still talking to folks and setting up meetings to see if things will work out, but what it’s shown me is that in opening up one’s self and yep, even one’s home, bits of magic can form.

Jed’s illness will continue to progress as will his need for care, but what I am finding is that in trusting myself enough to trust others, the caregiving I provide is all the better for it.

 

 

The thing about a good night’s rest

I admit it. More to myself than anyone else. It’s been a long haul lately.

I came back from a week’s writing retreat and boom, whatever demons that had been lurking, engulfed me as so many microbes of infection. Seeping in everywhere at once, I’ve spent days that have morphed into weeks swatting away the no-see-ums of depression, hopelessness, and the nagging sense that I have no where to go. And in between, the daily stuff. Writing. Aiming for vulnerability. Spending time with Jed so that he feels loved, and wanted, and needed, and relevant.

And we’ve been through Jed’s rounds of medical appointments. His latest MRI showing progression, but only a small amount from last year to this year. Of course, adding them up, one year, plus one year, plus one year, and so on means more than a little when counted together. But it only confirmed what I already touch. The new realms of confusion. My own sadness at facing this new normal masked by a determined bravado, but in truth, as palpable as Jed’s “I do not understand” expressions.

Back in my late-30s, I experienced a major depression. Each day was a buzz of activity from my early morning runs on through my exhaustion as I rolled off to sleep having worked till 7:30 or 8:00 at night, and socialized or something else till late in the evening.

In the spaces in between, my eyes would leak tears as I tried to suppress the misery I felt. The aloneness. The despair. All wrapped in the package of not knowing what it meant to be. And how ridiculous I felt at being so late century. So post-modern. So wrapped up in the throws of my existential crisis. Not for a minute allowing myself the truth of it all.

In moments where my guard was down, I could hear my own ironic inner core whispering that the payment was due for an adulthood spent existing without making certain I’d examined all the nooks and crannies of hurt and trauma. For not living the truth of my own existence.

“Not those, again,” I’d decry, while also knowing that my life was as precarious as my sense of being. That I really was tipping over the line a bit, so much so that friends talked and queried, and offered me sanctuary.

So, here now, 30 years later. So much of a brilliant life later, I feel the edges of it. Not that tears leak, or that I despair, but that it is easy to lose sight of one’s reason and place in the world if one remains cut off from living it. From the touchstones that are the little bits of the jigsaw puzzle that is life and has just as much meaning as the larger corner pieces that anchor one’s self to the reality of one’s life.

Yesterday, I woke up having had a brilliant night’s sleep. I was so well rested and in turn felt so refreshed and happy. It’s not necessarily that the no-see-ums had spent their annoying course till next time, but I was reminded that life is this wonderful panoply of joy and fun intermixed with the range of stuff that can sometimes feel like quicksand and at other times like the sweetest of clouds scented by the privet flowers that have permeated the air in this part of Brooklyn.In other words, it’s just life. A moment’s blip in the scheme of things. And truly, nothing like a good, restful night’s sleep to bring on the brilliance again.

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A reminder that caregivers can face special challenges–and that you are never alone. Here are a few resources:

Alzheimer support for caregivers

AFTD caregiver support

Caregiver.org caregiving and depression

 

 

Up before sunrise

 

It’s been a while since I was up before the sunrise.  I’d forgotten how noisy my street is at 5:00 in the morning with trucks making deliveries and buses idling before rush hour begins.

Before I retired, it was the time I had to myself. I’d get up around 5:00, patter around a bit, and then shower and dress for the walk to Gleason’s Gym or on off days, perhaps practice yoga before getting ready to leave for work.

Being up now feels like a holiday. An extra bit of time I hadn’t counted on. So far I’ve been filing away the huge pile of stuff that had obscured the wooden patina of my old pine desk, the one piece I have from my aunt. And yes, grabbing the tax papers I’d missed to send off to my accountant who is still doing taxes remotely.

The new cat, Sugar Ray, is not quite certain what to do. So far, he’s pretty much been letting me sleep until at least 8:00 am. He was certainly happy to be fed earlier and has been sleepily following me from room to room as I’ve been filing things away. And as is his way, now that I’m at my desk, he’s back at his perch on the window sill watching the early morning traffic go by. My perfect little sentry who has thankfully found something more interesting than my laptop.

As if on queue, with the perceptible lightening of the sky, I can hear the first faint sounds of bird song above the din of traffic noises. The sounds floating in on the top register as little bits of sweet chirping. Locating my city dwelling space within the urban landscape of life that flows in and around us if we bother to look.

Soon the birds will fly by as ephemeral whisks of light. Fleeting glimmers frozen in memory as something to delight. And so it goes.

Another week

Sugar Ray in the afternoon

Is it a week already since my last post?  What a blur.

I went to Gleason’s Gym on Monday and Thursday. Even added crunches in the sit-up chair at the end my workout. I felt a sense of accomplishment. The reminder of what a touchstone the gym has been and how much I miss it when I don’t go on a regular basis. The moments of self-care so revitalizing to my sense of well being.

The emotional rollercoaster has been moving forward to find part-time companion care for Jed.

I feel he needs an interesting someone to have contact with for a few hours a couple of days a week. Someone who isn’t me and who won’t invoke feelings of being infantilized from time to time. Still it gives me such an overwhelming sense of responsibility as I make decisions on his behalf. I admit that it is tangled up with my sense of helplessness and failure. And yes, I know I do not have the power to fill in the missing spaces in his brain. Or unknot the tau protein clotted ends of his neuron cell axon terminals that can no longer communicate. And no, me beating myself doesn’t help either, but the feelings are there for me to work through.

Meanwhile, plowing forward, I made a connection with an organization that specializes in matching folks up and will have a first preliminary meeting this coming Tuesday. The challenge will be figuring out how to introduce the companion caregiver to him so that it will be something that he wants to do. We shall see, but I have the hope that once we get past the introductory phase, it will help Jed engage more. And maybe even pry him outside when the weather eases up a bit more.

And so it goes.

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.

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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

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.

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.

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

http://www.theaftd.org/