Tag Archives: Caregiving journey

Of caregiving and caregivers

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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.

 

 

So much done

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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

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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

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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.