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What i have learned #1

I never really knew what Namaste meant until i met a lovely strong woman in ltc, caring for an angry demanding bed-ridden dementia husband.

We sat together on more than one occasion and cried, together, very quietly, hiding our tears from our husbands and the staff, in the dementia ward.

I learned that her husband was an university mathematics professor in India, and taught high school here in Canada. She told me, as he hollered, and she wheeled him back and forth.

Seeking comfort from each other, when we could find a moment, because no one else could know how very dreadful this was.

Sometimes she said, What have I done that god hates me so much?

And i would try to say, It is bad luck- no god would do this to us, but i don’t think she ever agreed.

I lost her when her husband died. Gone instantly from the ward. I know she had family in the US and i hope she is with her sons now.

But i learned because of her what Namaste means. The god in me honours the god in you.

And that learning will stay with me forever.

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I lefted you

So he said, clearly, repeatedly, deliberately, as he was wheeled into the little side room where we get to spend an hour twice a week. He eats or to be honest gobbles, and i try to catch the spills.

I knew his words were only slightly tangled.

I know he meant “love” and i don’t think it was past tense. The level of cognition required to know it was me, out of nowhere, bobbing behind the mask, and put that statement out, is actually quite awesome. Given all.

And yeah, a couple or four or ten years ago i would have agreed, quite bitterly, that he had lefted me. To be honest, i still measure time by before or after “Don left.” But he never meant to, and he does no longer know he did.

He didn’t leave, he was stolen by dementia. And he went kicking and screaming, sometimes literally.

The rest of that meal was more high stress and less aware. Juice, food, plates could go anywhere.

He has lost his awareness of space, measurement, and eventually inside/outside, like inside or outside the plate or mouth, over the years, and now it is gone i think totally. Except that spoon still manages to land in or near the mouth mostly.

Time of course doesn’t exist and neither do the memories held by awareness of time.

And yet a core remains.

Today, he struggled unsteadily up out of the chair and we walked around the little room. He reached out and held me in a tentive, then close, mutually-satisfying hug, stepped back and said something that resembled “You are beautiful.”

He also a bit later, cased the room and suggested, somewhat dubiously, that the space behind the whiteboard and between the chairs might do. Gotta put on the record that he was relieved when i wrinkled my nose and turned down that nest.

Remembrance of any kind! Beautiful! I will take it! and beg people to please be careful and please slow down.

If Covid cases continue to skyrocket in exponential growth, and the hospitals fill, the odds of another total lockdown increase.

The four months when i could not see him were the worst of my life, and i almost didn’t survive it.

But he did and I did. Now, as we are slowly getting reacquainted, beyond my wildest hope given the very high level of his dementia, the Covid numbers rise, slowly, and now faster, and worse, exponentially.

Rule of thumb doubling time is 70÷rate of growth.

Rate of growth, says Dr Henry, is 50 per cent in 13 days. That means in 2 weeks roughly, we can expect 140% more covid cases in bc.

If we have 500 a day now, that means over 700 every day in 13 days before the end of November. If we have 600 cases now that means 840 a day in 13 days. And well over 1000 a day by mid-December.

As space runs out and staff get sick, hospitals and ICUs and care aides and the whole system is at severe risk.

It’s starting to look less like Christmas and a lot more like covid careless chickens coming home to roost.

Please stay the blazes home!

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Gobsmacked

We had a lovely long hour in the room we visit in; we have 2 hour visits at supper and 1 day an hour quietly together. I had brought a few items for fun, one a Melissa and Doug pounding bench (age 2+) with colourful pegs that go up and down.

Well, that pounding game was barely interesting to his nibs, he was politely bored, but he liked the hammer after i took the plastic wrap off – totally rejected it before.

And then we had sanding and polishing — the pegs, my jeans, the board, for at least half an hour. I loved to see him engrossed in a project.

As our time together grew to a close, i introduced the art balls – colourful, pretty strongly attached, movable in many shapes.

He did clearly have opinions on how they should be positioned, including balancing them.

Then it was time for supper. To be honest, an hour or more of interacting with him so intensely on his level leaves me wrung out, so i was glad.

I got him up on his feet and the care aide came with the wheelchair to say let’s go to supper. But he was on his feet now. Forget the chair.

So she tried to walk him to supper, but he braced against the wall and said very clearly and loudly, “No I do not want to go.”

Behind, i collapsed laughing, thinking, that’s my guy! but quickly the care aide switched without blinking to ” let’s dance” swung his hands and seduced and sang him into the hall. I followed with the chair until at exactly the right moment, she got him sitting down.

For those who cannot imagine these daily care scenes, he needs to be in the chair to eat because he falls asleep right after supper. And he is heavy.

But i am still gobsmacked at the clear intent and diction of that “No”. He is way more aware of what is going on than it seems on casual interaction. My guy, still using his amazing brain.

I miss him so.

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A gift of heart’s content

It’s been quite awhile since i did an update. The weeks have rolled by and i have been waiting for something dramatic to report, but, as the saying is, no news is good news.

In our case, of course, I can only peer over the Covid walls and guess how he really is doing day-to-day, but the reports are good.

There has been trouble, seemingly escalating, over the long wheelchair ride to the visiting area. I had been granted 3 visits a week for a half hour, but this involved staff trundling him in a wheelchair along long corridors to a separate visiting room.

Sometimes it worked fine, but more often, he was squawking, “What are you doing?” and trying to get up and walk, which is forbidden.

I tried inside and outside. Chocolate helped. Sometimes music helped a bit (he has his ipod in the new place) but overall, i couldn’t get him to sit back down if i got him up to walk, and generally the situation was miserable for all, including me and the careing aides.

We reached a point last week where I cried myself to sleep thinking i would have to give up the precious visits because he was so stressed.

Then three visits in a row were pretty good although of course he had no sense of what was happening – he was just in a good mood those days i guess.

I got encouraged — and then a couple of days ago it got worse. He was right out of it, shaking and cold and saying “I’m a-scairt.”

The social worker phoned later and i gather on the way back to his unit it was a full-blown civil disobedience. He digs his heels in on the wheelchair and he is very strong and pretty well immovable. I probably am making it worse by refusing to let him be strapped in. His free will is almost all he has left, except a hearty appetite.

Anyway the social worker and i problem solved – Trial 1) warm blanket, music, etc.

Today when i arrived i was surprised to be told, we are doing things differently today. Apparently despite the methods of Trial 1, mr. don had raised extreme resistance. The staff decided to let him walk to a nearby room where i was to join him.

When i got there, apprehensive (a skairt and pissed off love is no fun to behold), he was stretched out on a recliner couch, watching the window with the rain and trees and wind, quite calm. Hard to believe this was the same guy.

It was a lovely quiet room and we talked. Early on, as i sat beside him on the most comfy couch we have shared in years, he said clearly, I know who you are.

He enthusiastically scoffed down some apple pudding and suggested (somewhat smugly i thought) that we could stay there. Or larer, alternatively that i should come here all the time. (Now, these interpretations are my impressions of what i got out of a constant stream of words, so i don’t really know … but i think that was what i heard. Could he be that cognitive?)

He sang many many songs and smiled and laughed. Even when i made a slight miscue, he would pause, while i held my breath, and then smile.

We sat together and watched the storm and the ocean outside, as we did so many times during our life together. i found a deep soul comfort, and i do believe he did too.

He wasn’t too pleased when assisted out to dinner but the care aide was skilled.

I have no idea what happens next, but he has made it pretty clear these wheelchair voyages are out for him.

I will treasure that peace of watching the storm, my love beside me, singing, forever. A great gift for my heart’s content.

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Don at his new care home

I know many of you lovely friends and readers wonder how things are going since, about 3 weeks ago, we, Don and me, moved to a new care home, one which has shown an interest in dementia care.

Moving a dementia victim is so very iffy, and leaving longtime dear friends behind is heart-breaking, but it does appear he is thriving!

Of course I have no real idea, except staff reports, what is actually happening in his life because i am locked out due to Covid. And I am afraid to get too comfy too soon.

BUT there are indicators. Apparently he rarely fights “care” and once apologised because, he said, “I’m sorry, I panicked.” Wow. Just wow.

By staff reports, he has only had one “bed day” in 2 weeks.???? That was yesterday, and i never expected him to be up today for our visit. 

But Yes, the person who answered the phone said, about an hour before that precious 30 minute visit: I saw him dancing with a care aide not long ago.

When i got to the visiting room, he was sitting very comfortably in a new “tilt” wheelchair, ordered for him.

He had a lot to say…

So I asked him, Do you like this place? and he said Oh yes. But once out of 4 over the 4 visits we have had, he said No, and by now he does not know it is a new place or what i was asking.

“I love you,” he said, and over the course of the 30 minutes, amid a whole whack of incomprensible stuff, he had somehow figured out that this was a good place and, authoritatively,  “I will sleep on that side.” On the side of me that he always slept on.

 ummmm just ummm okaaay,  my dearest heart. 

I stroked his cheek, and he snarled like the hound,  a long-standing character from his boyhood in our relationship.  I drew back, and he smiled and said, “I was just funning.” 

Very alert and active. He jerked his lovely new chair, with the brakes on, but no belt because i cannot bear him confined and his spirit broken, away from the table, determined to stand up and explore! 

Fortunately, it was hard to get his legs, the foot rests, and the table legs all disentangled, and i kept encouraging him to sit back. Had to push hard and stroke and cuddle a few times before he sat back, for 2 or 3 minutes before he was struggling to get up again. 

It was against The Rules for either of us to stand up and walk. 

Of course i would much rather walk around with him holding hands and hugging as we used to do, pre-covid. Or even in the other place where, as I was an essential visitor, we were allowed to walk around in a special room. 

But that is against the rules. Words fail, and i will say nothing, because these precious minutes are what we have. 

I think it is on Dr. Henry to figure out that these “health measures” are putting thousands and thousands of seniors through torture. 

But that is a bigger and different issue.

Here and now,  I will put on the record that he has seen, and I have talked to, more specialists, PT, OT, dietitian in the last 3 weeks than in the past 4.5 years.

And if the smoke clears we can go outside for a walk in 2 days, for the next 30 minute visit. 

 

 

 

 

 

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Sadly

The long awaited visit was a bit of a wash.

Almost a week after i moved my so-sick darling to a different care home, and after glowing accounts of how well he was doing, well, the social visit today was … not good.

He had, according to the phone reports, been up on his own for 4 days! extraordinary,  and usually that means he needs to sleep for many many hours, because it is exhausting for him. I would not have been surprised if he slept all day and night. I would have been very disappointed to not see him, but not surprised.

But the rec people said they saw him at lunch so he was up.

After some wait,  a very unemotive efficient young guy delivered him to the visiting room. He was in a wheelchair, as all the visited were, legs sticking out and diaper (i copped a feel) kind of weird.

Mostly asleep,  head hanging out of the back of the wheelchair badly, and then raving, …. gently…,  out of it. Even for him who is to be honest, actually always out of it. There are degrees of out of it.

At one point threw back his head and sang, gloriously. Had a lot to say, between naps, but so disoriented.

Without being able to hold and hug him, caress him, i could not reassure him and slowly ground him.

Not to judge this place, because i have not been able to do this crucial body language mostly for months now, due to the Covid imprisonment of elders.

We always knew care homes had big problems, but who ever imagined society would happily make them into prisons, pretending it was for the elders’ good.

He knows me, or knew me 2 weeks ago, with body language and a full body hug. And then he had that glorious smile.

Not allowed in this new situation. Not allowed to stand up and walk around, and then when it is right, hug properly.

That is how we communicate in his particular dementia, walk around a bit until he centres (well, as he can), hold hands, and then hug, touch, love for few minute or two, until it all passes out of his memory again. Or does it?

And the, even more worrying, 3 messages on the ward answering machine, unanswered. Very frightening.

I think he likes this new place, answered Yes! loudly when i asked, but whether he understood is a conundrum.

Tonight, fearful, i wonder, What kind of mistake did i make? Or did i? Is there any good place for dementia?

 

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Not Easy

Saying goodbye is hard. The staff where Don has lived for 4 and a half years have literally formed my Village.

Tonight i am grieving saying goodbye to some dedicated caregivers, and really decent human beings. We all know why it was time for us to “hit the road,” but the next bend is scary, of course.

And i will miss the sweet thoughtful kindness of those who looked after Don, and so many times held me as i wept uncontrollably.

The die is cast now, but it is a small beautiful Valley. My friends, be well, until we meet again, and I am sure we will.

Ciao.

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Hitting the Road

In 3 days, we, that is my love and therefore me, will move to a different long term home in the comox valley. It is very scary, and in many ways a great loss.

We have been at CVSV for 4 years and 5 and a half months. A very very long time.

We both have formed deep friendships with staff there and moving is scary and wrenching. Leaving home, leaving this village.

Losing those great caring caregivers could be the biggest mistake, among so many, i have made in this journey with Don. It is certainly painful to say, See you later. In my heart i deeply hope it is, See you later.

And we will see, or don will, i won’t yet due to Covid, the many talented caregivers we once knew and who moved. To a dementia-focussed non-profit home.

I know things go sideways in every care setting, so I am not expecting miracles.

I don’t know what to expect, except i think my live will thrive for awhile yet. And i remember how joyous he was in hospital last year. His spirit is strong.

But my gut and heart says, Now, and the opportunity is here.

I told Don in our last 30 minute meeting that we were going to move on. He seemed to have no comprehension – how could he?

But 15 minutes later he said, Is it time to hit the road, babe?

Who knows what gets slowly processed in these brains devastated by dementia?

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Learned

It is 3.35.

He comes slowly down the corridor, staggering a bit, hand held by the care aide, not distressed but not walking well, very distracted by all these new strange sights.

He is 5 minutes late for our 30 minute meeting twice a week. I am dancing on pins, wondering if i should bother the very kind folks at the front desk to phone back into the forbidden zone and ask? But there he is.

I come out to greet him and the care aide, facilitating, says, Oh look, here she is.

He says they left at 3.20. It takes a long while, and skill, to bring a severely handicapped guy through all these strange vistas he has never seen before, without triggering extreme fear.

As we go in to the visiting room, he has no idea who i am but i sound friendly and he takes my hand in his very very cold one.

We do stuff, and slowly his hands warm up. He happily sits (this sounds simple but involves a lot of suggestion, patting the seat, and him kind of roving around, finally asking, Sit here?) He looks and looks around the room we have been in many times before. More and more warily.

Now, my true love scared is a sight to beware —  even now i myself am slightly apprehensive — so I hand him the pool table wooden triangle hoping for a distraction, and he askes, To eat?

I say, er,

No, and try to interest him in making noises with it. No go.

He gives it back, not interested (that’s my guy!) and struggles up. We wander the room holding hands (yes same old room we have been in before, but each time new to someone with no working memory).

After awhile, out of nowhere, he stops and stammers, “i really really l-l-l-l lea-rned you” and bends down, holding me, quickly to kiss my mouth through the mask. Astonished, I turn my head and he kisses my cheek. For those 30 seconds he was intent, and then it was all gone again.

Disappeared into the dementia fog.

But for a couple of seconds, there was a beautiful happy smile in his eyes.

And so in my heart for the days until we are allowed to meet again.

 

 

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Passing strange

Lovely 30 minutes today. He was awake and in a good mood and talkative. The care aide who shepherds him said he had been up since 10 am! She knew he was ready to sleep for a few hours but was afraid he would miss our date.

Ironic but so dementia typical.  I had scheduled the date for later afternoon because he has usually been in bed until 2 pm.

Just gotta roll with whatever.

So we walked around, he kinda glommed on to a fake potted plant and i had trouble moving him away… maybe some slight disarrangement of the decor there.  Gotta roll….

We played with the shuffleboard for 2 minutes, his eyes widening at the clack when he hit a token.

Then on around and around the room again.

He selected a stacked up chair, not the ones set out and sanitised for us, of course, to sit down. I tried but could not steer him to those on this day. And he promptly, happily, started to dose off.

So i got him up again. I would be happy just watching him sleep, but it could be difficult to get him back to the ward. I even thought of calling the care aide to say, bring a porter chair in case he conked out. Even then it could be a problem. He can be a dead weight and too much for us.

After another round and round, each time a new exploration, it became clear he needed to sit again.

I tried the internet looking for music, and this week the connection to Shaw Open worked. Yay! And soon we sat and moved our hands to the music, all the while his eyes were closed. But he was not asleep, just resting. I tested by leaving my hand still, and over and over he picked it up himself to the beat. And he answered when i called his name.

It reminds me of how much he always wanted to share music, and how sometimes I was not gracious.

Oh no no no! not Kris Kristerstoffison for the 9th time straight! because he didn’t remember the other 8 times and i already, 8 or 9 or more years ago, did not realise the depth of the memory loss. I am sorry to say we – well i –  argued. He just thought “crazy woman” and mostly reluctantly humoured me.  The ipod I got as a compromise was not really sufficient for him, because music is for sharing.

So today we shared this Creedance Clearwater music with our hands. Once upon a time we would both be up and going crazy with joyous dancing, but that was not this time and maybe….. he doesn’t dance the way he did just a few months ago? A few months – going on 5 months – is a very long time as this disease progresses.

Before Covid we danced.

Slowly getting the beat and doing fancy moves with his feet, showing off, and being so happy when i twirled away and came back. Not for a long time have i seen that. No dancing now.

I don’t know how much he dances now, or why or why not, or if there is even dancing music ever in the ward  – no live music that i know, no happy Friday parties i know, under Covid. And under Covid,  i cannot visit his daily life. I am not allowed to know what is really happening with him.

When the aide came to take him back to the ward,  we chatted and he at first objected.

Since he got sick he always hated people, especially women, especially me, talking when he could not understand. So we slowed and lowered our voices and our pitch, and soon he was joining in. In what sounded kind of like complete sentences. Not too sure just what he was saying in particular but he was very satisfied to be a part of the conversation, and listened to.

When we got him standing up, and as he walked out of the visiting room, with the aide holding one hand,  me the other, he started singing. As i slipped away,  he sang down the hall away from me.

 

 

 

 

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