Monthly Archives: May 2021

He is clearly still learning and as he does, so do I.

I already told you how he directs his food. He has gotten even more creative with his tongue, extended to be fed. Sometimes flicking it in and out, making me laugh while he says, come!

I remember crying joyfully to the LPN about 2 months ago, “He knows the word Open!” and so he did and does, reliably opening his mouth for food. LPN wasn’t much impressed, probably seeing the bigger picture of inevitable decline and hoping i wasn’t buying into false hope.

But I was impressed, because he had shown no awareness of the ability to understand words in the few months before. No, not thinking there was any miraculous long term “hope” but fascinated by the resiliency of the brain to learn.

Tonight he was totally jittery, babbling, grabbing. We talked and i sang (!) love songs and hugged him and stroked and hugged him and gradually he quieted, and centred on us.

But not totally. When the food came, I handed him a spoon, since he had been how-do-I-say? imaginary scraping the table and putting his fingers in his mouth, approving of the results.

So i thought he would enjoy the spoon, while i delivered real life food to that eager tongue.

I handed him one spoon and so fast i could not process, the spoon was hurled forcefully to the floor ahead of him. A chilling reminder that dementia is dangerous in its unpredictability.

Thinking about it, i remember he has been disturbed by that corner, with a dark chair lift stored there, for months.

Was it a temporory fit, or an attempt to fend off the thing in the corner? I will never know, and long term care is not equipped to problem- solve on this microlevel.

i am untrained and uneducated, but i know him. I could maybe do this level of problem-solving, but there is no time no space. Covid does not help. And dementia does, to be honest, make it all a bit of a crap shoot.

Anyway, today as i gave him juice, and he was very thirsty, he grabbed my wrist and perfectly directed the glass to his eager mounth. He would not let go, but let me take it away so he would swallow.

He is still learning, as he deals with each stage of disability, now horrific, but he keeps on coping as he can.

I see. I witness.

I will do my best to keep company with this beautiful human, as i have on this very long journey – a road trip we never planned.

So tonight i went in to feed him, as he now needs all the time, a change, startling to me because it seemed so sudden. But i remember even 3 years ago being surprised that sometimes he could not feed himself.

I guess i just chose not to see. Now, although he remembers the motion of hand to mouth, and uses fingers often to do so, the delivery is so uncertain we need to pop the food in.

We are in a different world now. He still is aware enough to direct the food and drink when offered: come; more; yes. Sometimes as with minced boiled cabbage tonight, no! (don’t blame him, it was dreadful in my non- demented opinion. Not quite as bad as the pureed chicken and mostly dumplings passing as the protein component a week ago, but well… gross.) Anyway he is still aware enough to say No.

Almost of all the food i offer is accepted eagerly, but sometimes he is so busy eating and talking and not really swallowing that he coughs and coughs and gets very angry and scared.

So tonight, after he calmed down a bit, he had a question and called out on his right to Dearl (his older brother) then looked me, Dearorl… then forgot.

Minutes later as we ate more, he looked at me and said, Elnor?

Oh, I said, knowing this was his dear older sister who raised him as toddler, who he always wanted to see on trips home. Oh, i said, assertively and i hoped bafflegab reassuringly, Elnor is in Napanee.

NO! He pointed at my chest. Here!

We all ask this question, carefully, probing. Many of us have dealt with death during this hugless time. The silent heart-wails of loneliness must by now reach the heavens.

Some people have become bitter, or hang on to.the denialist equivalent of temper trantrums in a child. Some of us adopt the be of good cheer and carry on attitude.

We in our caregiving sisterhood do neither. We are already so used to suffering that COVID makes it worse, but is just one more addition to what we carry and what we have witnessed about love, greed, and relentless tragedy.

The same for me. COVID is just another layering on to a decade and a half of caregiving grief.

I am very happy with my life and work, to be clear. I laugh and smile and love the fresh breeze, the rain, the sun and green shoots. I wish i could live only and forever in that pleasant, priveleged state of mind.

But underneath it all, the life i am continuimg for myself – the friendships, the projects, the achievements – there is the inevitable on-going cheerful caregiving – no longer walks, now spoon-feeding while my love flits in and out of the present.

So I dread mornings, when i have to.emerge from.great healing dreams and enter one more day of the same reality.

I feel, to.be honest, like a mostly happy optimistic person, who has been daily crying – even though I’m not! – for a hundred years.

He talks so constantly and quietly and randomly, that no matter how hard i listen, i can make little sense. Sometimes he shouts out urgently for people, “Sam!” , “Jim”, ” mary” but i know not these people he is calling to, i suspect for help.

We were in his room today, much quieter than the common area. He always relaxes in the quiet areas because all that random noise keeps him on edge.

Over and over when having supper I have seen him answer “What?” to noise from other people in the big common room. How exhausting!

But today we were in his – half – room.with just a couple of care aides chatting and laughing in the hall.

After about half an hour of cozying, we were in our zone and he was doing pretty good with the feet, (note- major conceptual feat for a guy whose brain is just not working. ) He was moving his wheelchair enough that several.times i had to retreat so my leg didn’t get squashed. Been bashed already a few times by that chair.

No matter.

After enough time, and it does take time, he felt good, although of course totally uncentred in time or space or sense, but pretty happy I think. He sang several lovely songs, pausing to do so amid all the words i did not understand.

So i wanted to go.out to talk to the care aides for a moment, and hugged him and said i will be right back.

As I scurried the 30 feet away, i clearly heard him say, “Take me with you.”

And when i returned to his room, he had slowly moved the chair about 5 feet.