Tag Archives: dementia caregiving

Been a while …

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Budding tree, Cadman Plaza Park, Brooklyn, March 2, 2023

I’d say my vision has certainly been selective of late. Well actually that’s pretty charitable. I’ve been downright sad with a tinge of hopeless, which means the exterior world has a way of disappearing. Too difficult to negotiate with feelings that make it almost embarrassing to speak any sorts of truth. Even to those closest to me or to the folks I know who are caregivers and connect to those feelings more often than any will say.

Staying present is this issue for me.

If one is present in one’s emotion, that means leaning-in to sadness or anger or general grumpiness or happiness or joy … the full gamut. Being present in joy brings bits of euphoria, of seeing a full world of shimmering glory. Even the potholes of life. The bumps in the road. The little imperfections. All take on the caste of beauty. Of wholeness.

When in the ooky doldrums of a mental flu, not so much. And for me it’s the biggest trap. It’s when I go silent. When my world view shuts down. When the out there of day-to-day life separates itself from the interior floods of anguish or rage or any other state that isn’t perfected as a shimmering … yes joyful … reality.

And them I’m alone in it. Unnamed. Unknown. Emotions buried with little bits of leakage that come out disguised in a hail of intolerance. In why me-isms. In do-I-have-to-isms. When really I’m sad because my darling man just asked me if we were really married.

I had nodded my head. Started to tell the story.

He professed a lovely surprise that we’d been together for 26 years. That we’d married each other the first time on the top of a mountain in Jordan 25 years ago; had done it with a Rabbi and a New York City marriage license, a second time, 23 years ago at a decommissioned Synagogue on the Lower East Side.

How it had been the wedding of the decade with waiters so cute everyone fell in love with them.

How our friend Ray started out with Mozart and segued to Sentimental Journey as we walked down the aisle. How our recessional became a Conga line to a 1930s recording of a Cuban band.

How the magic of the place gave our Rabbi visions of its glorious past, channeling its former Rabbis and Cantors as he intoned the beautiful words of our marriage ceremony.

All of that in a moment. One I feel now. Much removed. Three weeks later. Tears in my eyes, thinking about loss and gain. About the lovely smiles on my darling man’s face as I told him the story of who we were.

Caregiving for a dementia patient is a mixture of joy and cruelty.

My glorious man tells me he loves me all the time. Middle of the day, middle of the night, opening a bathroom door, as I am washing dishes.

What isn’t there is the connective tissue of our 26 years. The good of them. The rough patches. The sharing of life and one’s deepest thoughts and feelings.

That’s what I am mourning lately. What feels so hard and interrupts my day-to-day. The connections that bind. The reality of loss. And why, at times, I just don’t want to see.

Caregiving for a dementia patient is not for the faint of heart–but you are not alone. There are organizations that can provide a lifeline to caregivers from groups to engage with, to real help finding resources. Here are few to consider (click on the name to open a new tab).

Alzheimer’s Association

Family Caregiver Alliance – Frontotemporal Dementia Resources

In New York City – Caring Kind

 

 

 

 

You’re doing your best

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Vegan Creamed Chick Pea Vegetable Soup with roasted veggie garnish and chopped parsley

When in doubt, cook something.

That’s been my week.

Not writing. Barely researching. Angsting about everything and nothing.

And really. What does “you’re doing your best,” even mean?

This in an email note from a doctor as I reported out the latest of Jed’s symptoms. How he described himself as feeling “whoozy” again and needed to get back to bed. His heart rate hovering around 50 and even dipping a bit below. My doubts on full display, “showing my ass,” so to speak. How helpless I feel. Yes. He’s fine. Nothing we can do until the data from the Zio patch heart monitor he is wearing is accumulated and sent off next week.  Then we can tell whether he really does have issues with his sinus rhythm.

All of this as I baked Jed’s “no knead bread” recipe. Starting it the morning before. Measuring the three cups of flour, 1/4 teaspoon of yeast, 1-1/4 teaspoon of salt, and 1-1/2 cups of water to get it started. Mixing it first with a spoon, and then with my hands. Enfolding it, feeling it coalesce, become a coherent bonded whole threading through my fingers, before carefully placing it to rest in a large bowl coated in extra virgin Kalamata olive oil. I think, “only the best for my Jed.”

Tear up thinking about it.

How hard this is.

How with the dough in place and rising across the day into night, Jed, had woken up at around 1:00 AM, unsure of how to go to the bathroom. I had a moment of cognitive dissonance, and then rose up and showed him the way as lovingly as I could with out a hint of judgement or despair or anything really. Knowing how he was entrusting me just in asking the question. Not wanting to appear “bossy,” his favorite term for me of late. Only to get the engine started a bit. Like cranking up an old Model T Ford car. Once the motor’s on it’s good to go, just needing the bit of a start.

Greek Fassoulakia with potatoes and kalamata olives

Lunch that day had been Greek fassoulakia: Green beans, potatoes, and kalamata olives in a tomato sauce with onions, garlic, basil, lemon juice, and a touch of cinnamon.

Comfort food for me. Shades of my 18-year-old self practically inhaling it off the plate whenever Nick’s mother Kalliope made if for us on the island of Rhodes in 1972.

Something yummy for Jed, as I’d taken him to Rhodes a couple of times, once in 1998, and once with Izzi in 2000–and where she started walking at 10-1/2 months. Ordered the dish practically every time we had lunch at a Taverna. Would mash it up a bit for her as we watched her smiling in delight with tomato sauce dripping down her mouth.

Later in the day, Jed was more of himself: Playful, funny, unworried about not having a clue. Enjoying the fresh soup I’d made in the morning to go along with the bread. Me dissecting the spicing (too much of the cloves) — him feasting.

“Hmmm,” he says, “the best I ever ate.”

And so it goes.

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Bradycardia (low heart rate) can cause confusion, dizziness and other symptoms, which can otherwise be challenging for a caregiver to interpret. This was only picked up on an ER visit as an incidental finding–and we still do not know if it, in fact, is the cause of Jed’s added confusion in the morning.

In researching the subject, I found a paper noting that bradycardia seems to have more frequency for frontotemporal dementia (FTD) patients with the behavioral variant, and thus something, FTD caregivers should be cognizant of.

For further information on bradycardia here are some resources (click on the item to open the link in a new tab):

Bradycardia in Frontomemporal Dementia

Strong evidence to links irregular heart rhythms to dementia

Bradycardia: Slow Heart Rate

 

 

Cat dancing through the week …

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Sugar Ray, the pugilist Georgia street kitty by the window on a Brooklyn morning

Some weeks I just feel so whipsawed.

Apropos of a lot it turns out! Elections, being less than on target writing my new book (yes, yes, I will make it up, but oy!), circumnavigating the rise in hate speech everywhere it seems, my daughter’s great week starting a new job, so yes, lots of joy for her, installing safety rails (bed worked, toilet, no), housekeeping (don’t ask, had Jed and his companion vacuum yesterday as a “therapy” exercise!), lots of healthcare discussions re: upcoming appointments for Jed (success and a big thank you to Lenox Hospital Cardiac Electrophysiology for their kindness and attention) … and then me.

Yes. It is okay to ask, “what about me”!

Starting with the inventory, ’cause hey, can’t take the project manager out of me:

  • A few months in with a therapist … check.
  • Boxing training … nope.
  • Self care … hmmm …. no where near enough.
  • Being centered in my emotions … no where near enough.
  • Time for myself … no where near enough.
  • Sleep … haphazard at best

In the tradition of the don’t mourn, organize school of action, the best way I have found to move forward is to put the mechanisms for self care success into place.

Yes, an inventory helps, but one needs to really ensure the full picture is captured along with some thoughts on how to mitigate those areas that are clearly putting one’s mental health and well being in jeopardy.

Sugar Ray sleeping, Brooklyn window

Starting with sleep and knowing I must practice what I preach: it’s all about routine and creating an environment of calm and serenity along with ensuring one is adequately hydrated and not logy from having had a huge meal right before bed. One should also put away the smart phone, iPad, or whatever other electronic devices are overstimulating the mind with crazy short bursts of sound and light. No, one does not need to check Twitter at one in the morning or watch crazy YouTube videos or TikTok. Just turn it off–and if one must engage with something, go old school and read a book until the eyes go all swimmy and one drifts into restful sleep.

Another big one is time for oneself–and not only time, but meaningful time. Laying sprawled on the couch mindlessly streaming baking shows for hours at a time is not the answer. I can surely attest that the practice is just as addicting and mind-numbing as any narcotic and other than a lousy alternative to sleep, it does nothing for one’s state of mind. I am a huge offender of this one–not only seemingly watching, but simultaneously playing ridiculous games on my smart phone. It is the opposite of mindfulness or appreciation for the little bits of time I can have to myself, and decidedly not restful, in fact, quite the opposite. And no, that doesn’t mean I can’t watch the next episode of Andor (or equivalent show) when it comes on, but it does mean I shouldn’t obsessively and mindlessly watch three more hours of nonsense I cannot recall because my mind escaped into a video induced haze. The solution I am striving for is to actually schedule the time on a calendar. From writing time to sleep routines and so on. Given that the stratagem has had splendid results during my work life, why not use it as a tool to better organize my life into spaces that can provide me with solace and meaning?

As for living in the moment while actually experiencing the accompanying emotions — that’s a huge one. If one lives an “awake” sort of life, it is much easier to find, touch and be in those experiences, but again, that means taking a turn at mindfulness in a way that can difficult to do if one has been out of touch for a while. I’ve graded myself a letter grade of C in that regard, but I’ll actually tweak it to a C+/B- given that I do hit the mark from time to time and can recognize when I’m letting myself off the hook. The emotions around Jed’s fall swirled for days before I really landed in them, but as I write this, I know that the work of being in the moment had been at play in the background.

Just doing this bit of writing, and trying to reach out to readers whose lives are circumscribed lets me know that I am on a more positive path. And for those caregivers among you, I can only say that mindfulness, even in tiny spurts, does bring a kind of solace and peace that allows the smiles to come back, both inside and out.

I can’t say when I’ll get work out with my beloved Lennox Blackmoore at Gleason’s Gym or feel that I’ve got the self-care fully in place, but I can say it is a work in progress. And as with most things in life, that’s a positive in the scheme of things.