How are you?

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.

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Whispers

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.

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Hmm

He no longer walks and so , slowly loads of clothes, some rags, some very good, come home.

I sort through them, kind of, what is good enough for the thrift store, what is just rags…and i slowly try them on… and wow a lot of those pants and pjs etc, they fit well enough especially for around the house (and what else is there these days? ) Sometimes I even see my hemming on pants – those stitches mine.

And so, they fit.

Could be sick or nostaligic but I think it’s not. It’s just that I’m wearing the big guy pants now for us and all our connections and creations, and care and finances…, Continue reading

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The Vaccine

Today (written January 16, 2021) i got the first dose of the Pfizer covid vaccine, because i am listed as an essential visitor for my love.

I was a bit apprehensive especially since it is likely the second booster shot will be delayed. But the company claims (uh huh) 90% effectiveness after 14 days. Too soon to tell, way too early. As far as i am concerned, i am approaching it as a miracle of scientific advance AND a population-wide experiment.

My mother took DES when waiting for me to burst on the scene, and i did develop cervical cancer 30 years later. I don’t think they were related but she did, so i am no stranger to the perils of drugs and drug company cures. The victims of the opiod epidemic can witness that much better than i can.

But anyway i trucked up to.the Campbell River hospital and got the shot. Better to try then not, has always been my motto.

Came home, took a nap, got up feeling absolutely great.

Realised a weight was lifting, slowly, but inevitably. Whether this particular vaccine works for the long term or not, there is life at the end of this terrible tunnel.of fear we olders have been living in.

My generation remembers polio well with many survivors marked by it; my friend Jim walked with a limp forever because of polio, and he was one of the lucky ones.

My mom’s wartime generation rememered smallpox and yellow fever and so much more, besides living through years of deprivation and endless fear and grief.

I went to measles parties as a girl, because if a woman got german measles (so we called it) when pregnant, the baby could be borne blind. So at puberty we girls went to.the sick.child’s house and were encouraged to.hug and kiss and share cake, and especially chewing gum, in the hopes that we would get the measles now, rather than a few years later.

I remember the yellow quarantine sign on my friend Beverley’s house because she had what we called rheumatic fever. She lived, pale and wan, and her heart was damaged forever at age 8 or 9.

I remember the kid a block.or so away…. and the endless whooping cough on a summer night.

So after the nap, when i got up, i began to weep from relief and appreciation. Science will sooner or later save us, especially we elders, from this scourge too. Then we can get down to the real.survival issues, like clearcut logging the old growth, like the embrace of globalization so that our country could not make its own masks, or vaccines, or cars, or plastic doodads, like over-consumption on the spaceship.

Like the survival.of the spaceship as a viable place for human life, and what kind of life that will be.

My darling gets his vaccine Monday.

Breathe.

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Passing peace

I don’t understand – can only feel what is happening. On Friday my love’s youngest son came to see his dad for the first time in 15 months. This was just a visit, finally allowed.

It went very well, in a quiet room. As Don relaxed and we all chatted, I could see him homing in on his son’s voice. His son was calm and unperturbed which helped. We just sat and chatted. Don seemed satisfied and content. It was actually a great visit, for someone so very disabled, i thought.

Gave me a happy glow all weekend, just because it worked.

Had no expectations of anything as good today, when i bopped in to give him supper. I had a new baby doll for him too.

We were given a distant room, away from the noise of dinner, with a lovely view, which felt great to me.

It took about 15 minutes to get him to open his eyes and relax, and then 15 minutes of an outpouring of his words, none of which i got. Asking him.to repeat is pointless because he has zero short term memory, except if he is triggered by a feeling like a threat (for example, pulling his wheelchair backwards, or loud laughter.)

As an aside, i do not know how much his care people realise how extremely sensitive and fearful he is.

So anyway, supper came and was greeted with his usual eagerness. It was quiet like the last visit again in this new room and we were relaxing. I was for once not in a hurry, had no secret To-Do list for the evening.

I slowly interspersed small spoonfuls of food with love talk and praise (got a tad carried away talking about what a good man he was for me and had to stop and wipe my eyes! hurts when i think that way).

Anyway as the meal wound on, small spoonful by small spoonful, his words more frequently fell into place.

I was gobsmacked when he asked “when he is coming?”

He clearly commented, “Good supper” and for pureed food it was indeed very tasty. i stuck a spare spoon into each item before i gave it to him, and then used my sanitized little finger to sneak that taste under my mask. Probably not quite allowable behaviour but i did not want to taste stuff his spoon had been in. Infection runs both ways.

It was a sweet time as he sang as he ate, and then later, we hummed and sang. I know we were communicating in our own way and truely just contentedly being with each other.

It was one of those deep connections words cannot capture and i do not want to destroy with words.

Then, because the care aides said his dresser drawers were stuffed with useless clothes since he now needs clothes slit down the back for easier dressing, we wheeled to his room and i loaded up a bag of clothes to take home.

I asked him to hold it for me, (helping still usually gets a positive response) and then we went back down to the common area, him with the bag of clothes and Baby doll, whose name might be Shirley.

I swear i heard him say, as we wheeled, “I’m going home.” The significance of what seemed a random remark, has only struck me — packing and carrying clothes piled on him as we did in airports –oh my!

He insisted as we parted, commenting “Heavy” as i took the bag of clothes, that i took Shirley’s little blanket but he kept the baby doll. We will see how that goes.

Dementia comes and goes in waves – and the situation, noise, over stimulation, and time to focus all play a huge role. Apparently, a love connection helps if one gives it time.

There is so much more cognition buried under those layers of seemingly insensible dementia than i have realised.

For me, i can hardly wait to dip again into that blissful passing peace. I will be joyful in the while.

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An interesting day

My partner’s son who is much loved by both of us, came to see his dad for the first time in person in 15 months. Up until now, he was only allowed window visits which were pretty useless at this stage of dementia.

It all went much better than I feared. My love was in pretty good shape, outside of needing to be cajoled and well, misdirected, out of chewing on a teddy bear.

I am sure he recognised his son’s voice. And he was calm and spoke several times, clearly. He was of course well groomed and actually pretty happy listening to his ipod.

I had feared this encounter because the last year has seen a pretty sharp decline in my sweet’s cognition and abilities. But his son seemed calm and accepting.

I can only stay sane by not thinking of the past, not looking at old diaries or even reading this blog.

But the care staff were warm and welcoming and it felt to me like we were in a weird and funny way, in my love’s new home, which it is.

As his days with us get less, I wanted him surrounded by observant and compassionate care. It does seem that he is, and it gives my heart ease.

For anyone interested, Crying Out Loud (which originated from a troubled dementia ward in the Valley) is sponsoring a discussion on Wed. April 14th at 4 pm about what quality residential dementia care could look like. You are invited Learn more. Please join us for this important forward-looking discussion.

It affects all of us, so it is time to figure out the future. You can register at

You’re invited!

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The little guys

Watching dreadful footage mostly on bbc about the starving disgusting treatment and in another case (cbc i think) bombed and burned children, I can only remember my loved, saying over and over, all through his dementia passage, “You’ve got to feed the little guys.”

Now he too is a little guy, opening his mouth eagerly, for another spoonful.

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Trickster

Once again, our dementia journey takes a little twist, as behoves the trickster with its show times (when relatives, friends, or doctors come) and crying times.

On.Monday he was so sick, so bad, wheelchair bound, completely incoherent and barely awake, on puree food (no one had told me) and choking on it, and just generally about a gazillion times worse than 2 months ago.

I left in tears, overwhelmed, assisted by an kind caregiver, and spent the next two days in wild grief and, to be horridly honest, guilt and release. Trying to deal with having to phone the funeral parlor. Unable to imagine The After.

This disease sometimes goes like that, especially i guess for dementia longhaulers. All pretty much the same for weeks or months, a slight decrease, a long time at each level of disability, and at the end, very sudden decline. Two or three months ago he was still walking and feeding himself a lot of the tine.

As a loving partner, you get used to each stage of loss of ability. And just as you think, (after shock and grieving), Okay we can live with this, just as you get comfortable, another decline, another blow.

I know many families do not even try to accompany their sick person on this journey (gut wrenching for us observing, but probably just normal reality for our ill ones). They say goodbye at the care home door and go home to grieve. Yes, i have often envied them. I do not judge because grief is grief, no matter how it comes down on you.

Anyway after all that grief the last two days, i dreaded going back to see him again on our next scheduled visit, another dinner date. I dragged myself in and pasted a smile on my face above the mask.

And lo and behold, the trickster was back.

My guy was perky, had a lot to say, and apparently, plans, saying clearly: “I want to go to Canada”- his infuriating way for years of talking about our annual trip to his old sod and family in the Madawsaka Valley Ontario.

He clearly thought the space beside the table would be suitable, and asked several times. He used the extra spoon, upside down, to scrape at the table and feed himself, quite enthusiastically. He was clear about what food he wanted (well, all of it!) and said thank you. He did not cough once.

A month ago, I had hoped for a rebound where he would walk.again, but that is just not going to happen after 2 months in the wheelchair and not trying to walk. But today he was trying to reach the usual mysterious things on the floor and used his legs to move the chair.

He called me “dabe” which is close to the babe he always called me. He even ventured what i think was my name. He very clearly counted his fingers up to eight. I remember being thrilled 2 years ago.when he counted to five.

With what relief i greet this new slight reprieve. Now, and each and every time, every stage, I am back to scheming how to help his ravaged brain, how to comfort the soul i love within.

How to.put my exhausted finger in the hole in the dyke one more time.

Trickster, dementia trickster.

..

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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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