Tag Archives: The Association for Frontotemperal Degeneration

Falls, health, and moving forward

Caregiving for a person with any sort of cognitive degeneration is never for the faint of heart.

What’s breathtaking are the decision making processes one goes through for issues large and small. The hardest have to do with health and contending with making choices on behalf of another. At times it feels as if one is skidding across a slippery floor; stepping carefully but with uncertain footing–an apt analogy for the feelings of inadequacy that surface in the throes of working through the decision tree.

Meanwhile, I woke up at about 5:30 in the morning on Monday to the sound of a loud thud. The last thing I could have imagined was hearing Jed’s voice calling out, “help me, get an ambulance, call an ambulance,” in the saddest, softest tones possible.

I quickly surmised that he had either fallen out of bed or fell as he was stepping on to the floor. I’ll frankly never know, but on his way down, he sustained a small laceration on his ear, which bled profusely, along with a mixture of confusion and fear as he struggled to get up.

Helping him to the bed, my next task was to soothe him, while taking his vitals, dressing his wound, and eventually assisting him to the bathroom. Quite surprisingly, he was able to walk there and back on his own with a determined assurance. He was also able to communicate readily by that time, and with no obvious injuries other than his ear, I made the judgment call to forgo an ER run just then, in favor of letting him rest and get back to sleep for a while. I on the other hand, watched, fretted, listened to his breathing, and worriedly scoured the internet for all things falls and traumatic brain injuries.

About nine in the morning I left a message with his neurologist. I spoke with the nurse from the practice around one or so, and at that point, agreed to go to the ER to ensure there were no internal brain bleeds, et al. I had already been giving him a concussion protocol for a mild traumatic brain injury, (thanks to Izzi), but as he tends to be confused in the morning, following it was a bit tricky. He also noted feeling “fuzzier,” so going to the ER made sense at that point–especially since it was the same hospital chain as his neurology team.

A car service ride later, we were fairly immediately brought to a room in the facility, where he was promptly poked and prodded for a couple of hours including vitals, EKG, CT scans, and a full blood work up looking for signs of head and neck trauma, and potential causes for the fall.

Luckily, his brain did not sustain any injuries, but he did have a couple of anomalies in his bloodwork that I’ll be following up on over the coming days–reminding me how much I forget he is also a man in his 70s and prone to the vicissitudes of aging.

I should add a word about ER visits with a dementia patient. Impatience does not begin to describe what happens when the tests are completed. I also didn’t bring water with me (tip for the future)–so the grumps were exacerbated by a bit of dehydration until I grabbed some from a nurse. My challenge was engaging him in things to do while we waited for test results, so out came the iPhone with varying Spotify lists and YouTube videos. He found his favorite; however, on his own–folding his bed sheets, which gave him something to do for a good 15 minutes or so.

Once home, I’m not certain who was more tired, but we managed a quiet few hours. Izzi had joined us by then which gave Jed a wonderful boost, and afforded me a few minutes to collapse in bed.

I’m still assessing what happened and its meaning moving forward–aside from the knowledge that I need to figure out how to make the bed area safer, and really start to think through a better “to go” plan for any future emergency situations. I also always tend to think more about the effects of his cognitive decline and less so about the other things that might effect his health. And yes, I do have my work cut out for me to fortify those aspects of his care as even with once yearly visits to the internist, things happen.

Right now, I’m just taking some deep breaths and reminding myself that looking forward is always an unknowable set of possibilities that one must be open to. That, and a decent night’s sleep.

 

 

 

 

 

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