Tag Archives: Frontotemporal Degeneration

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.

======

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

 

 

So much done

Sometimes we all need to remind ourselves that we do a lot — and not so much rest on our laurels as to acknowledge the good work accomplished, with a nice “atta-girl” pat on our own backs.

For caregivers, that is especially essential because we can feel our lives to be nothing more than a Sisyphean task wending its way as so many cycles of frustration and grief.

Successes though, do happen, and should be celebrated!

My big success has been the introducing companion care to Jed. For three hours, two days a week, he meets a lovely lady who hangs out with him. It is a bit rocky at times — because it is kind of hard to get to know someone new in the best of circumstances — but they persevere!

Jed and his companion have chitter-chattered, gone for a walk to our favorite local Pizzeria, tried and failed to do a crossword puzzle and two or three art projects, but through it all, it has given Jed someone new to engage with, no mean feat in the pandemic era, which has enforced isolation.

The other laurel I am allowing myself to take a bow for, is gaining approval for Jed to have in-home physical therapy. Provided by the Visiting Nurse Service of New York, he will have two weekly sessions aimed at helping him regain his physical stamina, muscle tone, and flexibility. And the timing couldn’t be more perfect! With Spring underway, there is no better period to walk about the side-streets and parks of Brooklyn as flowers begin to bloom and bird migrations fill our skies with beautiful sights and sounds.

And finally, Jed had his jab number four yesterday, with the fervent hope that he continues to remain COVID free!

So, yup! Three-cheers to myself for this week’s accomplishments. I’ll take them where I can find them.


The Visiting Nurse Service of New York (VNSNY), is part of a national network of organizations providing home health care services.  A doctor can put in an order for a range of services including, skilled nursing, home health aid, and rehabilitation services.

 

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.

At the dentist

 

One of the issues caregivers face is ensuring proper dental hygiene for their loved ones. As memory slips, so does the concept of the kind of routines we take for granted as part of our normal day. The wakeup, hit the bathroom, shower, shave (if needed), floss, brush teeth, et al., becomes an illusive construct. The end of day wind down is the same. A foreign movie without benefit of subtitles.

“What? Brush my teeth, you’re so bossy!”

Caregivers know it hits straight into the dilemma of an individual’s sense of self and autonomy in the midst of an on-going memory meltdown.

At the dentist last week for Jed’s six-month check-up, we ran into the issue of dental hygiene. I’d warned our dentist on the phone when I made the appointment so she was prepared. What struck me though, was her incredible gentleness as she cleaned his teeth even as she used quite a lot more rigor than usual.

Sitting outside, I felt by turns sadness for what he was going through, guilt for not having implemented the secret sauce for twice daily brushing, and a sense of being beholden to her for her kindness.

“You’re doing good, Mr. Stevenson,” she said. “I’m so proud of you. I know this is hard.”

Jed didn’t complain and then in speaking with us afterwards she said, “Mr. Stevenson, I do need you to brush your teeth twice a day. And your wife, Malissa, is going to get you a special new toothbrush. It will be a lot of fun.”

One new Philips Sonic electric toothbrush plus a special new heavy duty prescription floride toothpaste later, we headed back to the dentist this week for a followup appointment to top off a filling that had come loose.

Sitting in the waiting room, I observed again the kindness the dentist showed Jed.

“Did you use your new Philips Sonic toothbrush today, Mr. Stevenson?”

He didn’t quite respond, and then taking a look inside his mouth said, “ah, it looks as if you did. Very good, Mr. Stevenson. That is wonderful. Keep up the good work.”

Yes, she was speaking to him like a six year old, but her manner had a sweetness, that disarmed his sense of violation at being told what to do.

What I felt was beholden to her. In what can seem like an indifferent world, her tenderness touched me deeply. I tear up now thinking of it. Just calling him Mr. Stevenson gave him an agency that was powerful.

Reflecting on it, I realized that it also gave me the sense that I wasn’t alone.

For further information on dental care for dementia patients, the Alzheimer’s Association has a very good primer, the link is here: Dental Care.

Aging Care also has some good suggestions: Oral Care Tips for Dementia Caregivers.

As always, please feel free to contact me if you need help with caregiving.

 

 

 

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/