If I can’t dance

“Don’t you understand? If I can’t dance I will die!” he pleaded one Monday night when he wanted to go downtown, not understanding Monday or that there was no dancing downtown on Monday nights.

Now, he can’t or won’t or doesn’t walk, i am told and i see on our covid-rationed visits.

Despite all these years, this feels very sudden and i have been avoiding writing this update on the hope it would pass, as so often before he has dipped and then bounced part way back.

His sense of humour is diminishing too.

But so far no bounce back, not yet. Even so, after a rather nasty supper, while he spilled food everywhere and alternated between feriously rejecting my spoon and then eagerly gulping down the offering, even during that rather unhappy supper, when he bumped me accidentally he turned and said, “oh, I’m sorry.”

And over and over for the last month he has told me, “I’m scared.” He is calling out for his mother, his big sister Eleanor and brother Dearl. Even Dearl’s long dead wife Glenora. No one but me would know who he is calling.

And i am scared too. I have been grieving and caring for a decade and a half, and i do not know how much more I can survive.

And then I pull my head out of my bubble and remember all the anguish of my sisters from Ward 1F and of all of us around the world, ensemble. It pulls me out of the grief spiral but it doesn’t change my endless shock and grief.

Every stage of this disease brings grief, and then, again, another grief, like a slow drip. A torture, alone in one’s mind and memory. This misery does not love company.

The disease has stolen my best friend, sneakily, piece by piece, no matter how hard we both fought against it, over 15 years, and it is not finished yet.

I have grieved every loss, and in the early days, he did too. Sometimes he raved, and sometimes we grieved together.

Now I grieve alone, and try to comfort him. “Don’t be scared. I.will be with you.”

He doesn’t understand the words but seems a bit comforted by my caress.

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Five Years

The day after i wrote the “Can I come?” post, when i was escorted, masked as always, into the room where I would help him with supper – always an adventure – he saw me and said first and clearly, “I want to come with you.” This happened.

And then we descended into words i could not understand , and trying to eat (him) and not spill too much food (me).

January 8th, 5 years ago is when our friend Debbie and I took him to the first care home for full time residence. Our hearts were breaking, but he was strangely calm, saying, I’ve been here before, recognizing the care home atmosphere whether from visiting my mom or his mom years before, or from the couple of respites he/we had at another local facility.

I haven’t written much since he/we moved to another home in the Valley. The atmosphere is different and my crazy protective fears have calmed. They went into overdrive after the pneumonia a year and a half ago, and I could never relax after that. Now, I do not feel I must phone every night, and when i do I usually get an accounting of his day from the care notes. Imagine!

I am allowed in to see him 3 times a week, which does not replace the ability to drop in and check his mood and care at random times, as i used to do, before Covid. It is probably, no, definitely, better for me. I know when i am going to see him, I know they will phone if something happens (because they have), and the rest of the time I can go about my own Covid-limited but enjoyable life.

But it is immensely more merciful than the months when i could only see him on video calls, which were, despite staff efforts, basically useless. He was usually in bed and not responsive anyway, of course, because TV screens stopped having meaning for him about 7 years ago.

May i never forget his unrestrained joy on our first during-Covid visit, just 6 months ago.

Now he does not walk so much, although not strapped in to his wheelchair. Now his talk is often bursts of song, incomprehensible like his words, where fragments make sense. One has to listen hard. The shards of mind throw up sense from time to time. Although, to be honest, he knows perfectly well when he wants more of a certain food or when i should shut up, and is very very clear about it. So it is a mix of mind-jumble and understanding, which makes it difficult to track!

I think he only recognizes me as someone he trusts, although he was calling to Debloris the other day. My voice seems to reach him, calm him, somehow. He will sometimes stop and listen and say What?

I know for sure he remembers nothing of his past, from his beloved family home or that family, to the rest of his life and the rest of his family.

He wrote “Going Away to Sea,” an account of his young days joining the Navy in the 1950s, for his grandkids, and to help him remember, but all that is gone.

Almost forty years of living and fighting and loving and grand adventuring together — all those details, gone.

What remains is still a beautiful smile I do anything to coax out, and a strange sense of humour — he tells stories all the time the rest of us don’t understand but which are obviously very funny.

What’s left is a caring person. “You’re hurting me.” “What, oh … sorry, are you ok?”

Wanting to share the minced stuff he gets for supper.

Wanting to share the napkin he tore from my hands in feverish hunger, then bit and chewed, to my horror, and then as i wrestled the rest away, generously, “Here, do you want some?”

At this bizarre 5-year anniversary, i am thankful he is still with me, but he is leaving, slowly stolen by this dreadful disease, and i know my painfully-loving task is to be there with him. That is what partners do.

But there’s no rush …. he is strong and from a long-lived family.

So I am going to have to find more things to entertain him.


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Can I Come?

The refrain of our lives for decades as i undertook environmental activism – “I want to go with you.”

And often he did, to meetings and conferences where his passion would contribute to understanding of love of rivers or the folly of our money system.

Sometimes he did feel out of place, and in the introduction circle would say, “I’m Don. I’m with her.” He kind of joked about a Tshirt that said, “I lift heavy objects,” because of the boxes and displays we schlepped here and there and everywhere.

Of course he was much more than he gave himself credit for, as the many friends who still care about him to this day would agree. His writing was stunning, provocative, evocative. His passion compelling, and/or at home, to be honest, irritating, more than once a week.

“Can I come? what will you do without me?”

Indeed!

But often i said No, as when a dear friend and I went to a people’s conference on dioxin in Baton Rouge. It was a grand experience, eye-opening, challenging, to see what organising on environmental justice (the communal right not to be poisoned in your home) really looked like, where Chemical Alley met the racial slums, houses jammed right up to the chemical plant gates.

It was one of the best experiences of my organizing life. When my friend and i touched down in Vancouver, we stopped for a drink to decompress on our way to the transit to her house where i would stay overnight.

Little did we know the tempest of angst brewing between my guy and her husband, whipping each other up to a fever of anxiety and righteous indignation, especially over that last pleasurable hour. Funny now, sort of, but completely vexing for weeks afterwards.

Fast forward a decade and a half.

“I want to go with you!” The insistent cry rejected our loved caregiver’s best efforts, she there to give me respite, and the outburst threatened one of those catastrophic dementia explosions.

But I was the one who exploded. I had a simple 30 minute shopping list at the mall. ALL RIGHT I roared, Come on!

And i stormed out (can’t remember if we took 2 cars or 1) to the mall.

“You want to come, come!” I yelled, and dear Debbie, my lifeline then, followed along, doing her best to calm him, distract him, assure him, while i raged and raged.

(I will say in my slight defence that it is terribly hard to live for years being shadowed by dementia everywhere almost 24/7, even to the bathroom – and that day i cracked.)

It was terrible, brutal. In the end i remember seeing him weeping at the store entrance while Debbie, truly shocked, lovingly consoled him. Her white face, his complete bewilderment, will haunt me forever. As will my rage.

And we all cried together afterward. But those tears did not really heal. May i never be possessed by that anger again.

Yesterday, years and tears later, in the care home at the end of our allotted hour, he grabbed my wrists and would not let go. “I want to come.” It took two care aides with hugs and a shoulder massage to get my hands free.

In the good old days – BC before covid, 10 months ago – i would drop in and out of his care home at any time. I could check how he was, randomly, and did.

He believed i lived somewhere around there and i think it consoled him. He would say, “oh there you are, I was just going to go look for you.”

And now as i rub my wrists, i answer with my soul, not words, i want you to come with me. I want to go with you.

Maybe, I hope, way down under the screwed up scrambled brain cells, in his soul, he too knows. I think he does.

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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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