Seasonal Reflections

I first called this post Holidays are Dreadful.

Well, they are. Not, of course, only for dementia victims, although many of them have lost a sense of time or the significance so they are actually fine, but for everyone struggling with loss. While everyone else is kissing and hugging with family, we are on the edge of our sanity, trying to put a brave face on all the well-wishing.

Like millions around the world,  for us, the celebrations have a dark edge we tiptoe around, while our friends and family try their best to make it better, and we pretend they are, because it is what it is,  and there is no alternative.

But that was that post, and now i want to move from the dark and the pain to the light, if i can.

The gifts this long journey have given me need full acknowledgement. Hold on, it is a pretty long list.

I have learned to dance in public. Always too embarassed to get up and boogy, now i do, at the least opportunity. Especially in the care home, trying to help others to moments of joy. And gaining joy myself, because I have forgotten to care about how or what others see.

I have met and grown to love my caregiving sisters, because we know each others’ hearts in special ways. This is a priceless gift.

Most of those sisters are people i would not, in normal day-to-day busy-ness, have had the opportunity to get to know. My life is richer.

I am slower to judge (still a work in progress) and most of the anger has been burned out of my soul.

I am learning to listen, not to the words, but to the person speaking, and this is glorious. Truly, really listening puts you into a glorious space. Well, yes i must admit, when you hear the pain, anger, greed, that hurts, but better to hear than block one’s soul from listening to all.

I am unimpressed by incontinence. We come into the world as babes and now i see incontinence as an artificial fear. The people remain, despite the disability.

I am more inclined to speak my mind and heart, and damn the torpedoes, but less inclined to be mean about it.

Trust has always been difficult for me, too much and bad consequences, or too little, and ditto. Now I am much happier in the dementia world, and its framework, where you might get whanged if you are in the wrong place and say the wrong thing, but where people are right there, bold-faced, up front, they are what they are. I am learning to be so too and meet them where they are. It is joyeous when that connection happens. Life is short and precious.

I am spending many years contemplating how, as my love got more ill, he went out of his way to rescue earthworms, save spiders, not step on ants, and generally show respect for life. Often with a fond chuckle. Which was a bigger change than those who know him now would imagine.

I have learned with great difficulty, and to my disbelief, that i am not special. Disaster strikes and you … cope. Or fall apart…. Or do both! The choice laid on you could be slow or instantaneous, could be because of a diagnosis, a natural disaster, a war, but none of us are immune. And we don’t know how we will adjust, what strengths we have, until we need them.

And the same is true at death, the mysterious end of our path here on earth.

I remember a dear friend of mine, lost to the cosmos too young, who would not put up with regrets about the past. What-Ifs are useless baggage and we need not drag them around. But we can listen undefensively and with no regrets  to those voices woven through our lives. Every day is richer for them.

And that is just life and death on planet earth.

In a strange grief-ridden way, I am content.

 

 

 

 

 

 

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Kilt?

The husband of a dear friend of mine has just died in the dementia ward. He was a sweet dear man who always had a hi and a smile for us as we wandered past.

But now my sweet, surviving on his intuitive senses only, has started talking again about being kilt.

There is a back story here from about 3 years ago, when one of the bodies was taken out through the little lounge area when everyone was there.

Well Don and his friend freaked out, deciding this was proof they were being held prisoner to be killed and eaten. The eaten theme sounds like my guy in his worse hours of delusion. i must have written about this before (and heaven forbid this blog gets boring, although it is my life so i guess if i want to be boring, i can! Reading is optional)

Anyway,  the guys held a mini jail riot, Don tearing papers off the walls and his friend overturning the laundry cart. And who could blame them, operating on the limited evidence they could access and process, and the clear facts that they were locked in and people were dying…

Honestly, they weren’t that far off, except for the eaten part.

Anyway, now my friend’s husband has departed and the being kilt has returned to my love’s shadow mind.

“Let’s walk around here,” i suggest, pointing down the same old hallway that bores me to screaming after almost 4 years.

“Sure,” he says brightly, smiling, not in the least afraid. “Is that where we will be kilt?”

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Walking on the earth

The care aides and staff are worrying about his snoring and snorting at night. I laugh and say, “oh yeah, he always did that. The trick is to hug him and whisper in his ear, ‘Roll over, I want to cuddle.”‘

Snuffling and complaining, the big bear would roll over, protesting, to me peculiarly and incompehensibly, “But the gods sleep on their backs.”

The correct answer of course is –  No no not, stop snoring jerk! – but honeyed words…  “But i want to cuddle you, so roll over … Chum.” (Can’t encourage the gods’ swelled heads you know!)

And after some wiggling and snorting, peace would descend in the night.

The care aide, a big guy, laughs and  says… well i don’t think i’ll try that, he’d probably punch the dickens out of me.

Too bad, i laugh as i skip out, home to blessed freedom from dementia for another day.

But later that evening,  i remember how, after he started the fire in our cabin and made coffee for me, he would crawl back into bed with icy feet. As i tried to warm him, (oh yes, more cuddling) he would say, “I am glad to be back; I have been walking on the earth.”

oh my i miss those sweet mornings  and my coffee in bed, delivered mostly with a kiss, but sometimes an annoying “Time to get up, Layabout Lout,” and then a kiss.

Eventually he got too confused to deal with the coffee anymore, even when after we moved to the city we got a coffee maker with a timer.

Then it was time to improvise, so I would hop out of bed, and pour a half cup, (because he wasn’t steady enough to carry a full cup and it distressed him when it spilled).

I would give him the cup, and scurry back to bed, so we could continue his love offering on the morning.

Now we are both walking on the earth, apart.

 

 

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Overnight?

I get there about 4.30, timed to check out the supper offerings. Lunch the day before was pretty dismal, and i am wondering if the care home is sliding back again, or if they have lost a good cook?

Anyway, when i get in, he is still in bed from his afternoon nap, very comfy, and is confused when I turn on the light and announce supper etc, all, to be sure,  introduced only gently and slowly.

He focuses on me, blinking, and says, “Are you here now?”

“Yes,” i say, “I come every day because I love you.”

I don’t add, because it is way beyond his comprehension or need-to-know, that i have to come, because I don’t trust the care home to look after his more subtle needs.

Yah, real real subtle like, for example, cleaning during outbreaks, or undiagnosed pneumonia– yep i am still deeply pissed and in uber-protective mode.

This defenseless person, my former partner, has aroused all my motherly ferocity. I hate the way I cannot move on with my increasingly short life, but obligations rule, and obligations to innocents rule most.

“So,” he slowly says, breaking my heart, still not sure where or why we are here, “Are you here to stay now?”

“Oh yes,” I lie, sobbing silently deep in my soul, where no one knows, just one more heart-breaking therapeutic fib among so many, “I am here to stay.”

“Overnight?”

Jeez, he has lost so much language, how did he pull that together?

I am stunned but muster another (probably sickly) loving smile and say, “Well, um, no, not All night, i think not.”

He castes an eye around the barren room and the bed he is so comfortably tucked up in, with no room for two, and agrees, Ok.

Eventually a great care aide and I coax him down the threatening hall (which he has clearly never seen before and holds all sorts of dangers he says he would rather not face) we coax him down and into his chair in the eating room.

He devours coffee and cranberry juice, offering me some politely from time to time. But he is just as glad I refuse.

Then as we wait, he starts in on the table, using spoons to saw at the napkin, “Milk,” he pronounces. Then, when my head is turned for a second,  the fork successfully gauges some shreds of napkin.

I grab them before they get to their mouthy destination. Despite confusion, he doesn’t protest, and i remember how he used to say, fondly, when he didn’t understand, “Crazy woman.”

Supper finally arrives, but the aide realises the meat needs to be cut up, and carries it away again. “Hey!” he shouts.

When it comes back, the meat is nicely chopped, but the delicious baked potatoes and the (amazing!) perfectly cooked broccoli and cauliflower are in huge chunks.

As an overloaded spoon heads to his mouth, or the floor, i hastily cut up the rest into manageable chunks.

I can then leave him with a kiss, engrossed in his meal, and humming as he eats.

But the thing is, he can indeed eat this good soft and actually tasty food, but he has no sense of size or how to make the pieces small enough to eat. Or how much fits on a spoon, or in his mouth.

Is it unreasonable to expect a care home to know a resident likes “real,” albeit soft, food, but needs that food cut into spoon size pieces? I would and did do that for him at home 4 years ago, as you would for any young one, which in some ways he now is.

I fear, rather than 2 minutes of staff time to cut the food smaller, the alternative might be the ghastly minced food we just got him off a few months ago.

It is a marvel that he still continues to want to eat. The minced food is not an encouragement.

 

 

 

 

 

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Doll gate

We are walking around and around the ward. He is pleasant enough but shows no signs of recognising me.

My back is hurting and, frankly, i am bored, so i grab a doll off the shelf and hand it to him.

It is wrapped in a nice jumper but its appendages- head, hands, feet , are hard.

“Oh,” he says, “when did we get this?” (ahha he did know we had some connection!)

I gulp and say, oh about a month ago.

“hmmm I didn’t know,” he says with a mix of suspicion and surprise. I’m busted, but he forgets.

Later he works hard to tear the head off, but these items in the dementia ward are built tough. Eventually I intervene, but later he is twisting and twisting at its arm.

“You are hurting it,” i say. He looks, and hesitates, and stops for the entire hour, until i spirit the babe away at supper time.

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Is It You?

For a year or two after my love “went in” to residential care, he was very clear that he know who i was and even, sometimes, why we were not together anymore.

Once he carefully and sternly  announced, “I don’t mind it here. I will stay, so long, so long,” he emphasized, “as you visit every day.”

Of course he had no choice anyway, part of my pain and guilt, but that’s a different story. He was unable to figure out the keypad lock, although once he brightly remarked, “oh so that’s how you do it.” But then the information disappeared because he can’t transfer from short to long term memory. And these days he can’t access long term.memory either.

Soon i tried to visit less often for my own mental heath,  until it became clear that the care was patchy, and my heart had holes.

As time went on, he would look and touch me, and ask, Is that you? Then, reassured, he would laugh and we would kiss and hug, while he tried to figure out where we could spend the night. Under a bush? in the lounge? perhaps camping in the garden? maybe break into the linen room? were some of the alternatives offered.

But personal identities were getting sketchy. The care aides said when he confused them with me they let him, because it made it easier to look after him. They hoped i didn’t mind, and i didn’t.

I remember one day he turned the wrong way and hurried down the hall after a black-haired aide,calling my name in a demanding panic.

He had by then forgotten the names of his wife and his children and all his brothers and sisters, all carefully counted on the fingers every morning, sometimes twice a day, for years and years after diagnosis, his insurance against losing what mattered most. They were who he loved and he did not want to lose them.

And now he has almost lost me. He likes me well enough that I can (usually) bring a joyous smile to his face but my name was lost months ago.

Now he mostly has no idea why this friendly woman comes into his life. He doesn’t know it is every day, because time is also lost. Oh he doesn’t mind, and sometimes still touches my face and tells me i am beautiful.

Yesterday it took a little while for him to focus on me, but when i asked, Can I have a hug? his arms came around me, we kissed.

To my surprise, amid a confusion of words, I heard “stay a hundred years” and i knew it was his old refrain,  the old love spell,  “I wish we could stay together like this for a hundred years.”

And i knew he knew it was me.

 

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So much to process

So the Island Health-appointed administrator had a meeting with families at Comox Valley Seniors Village two days ago. The room.was packed and even more issues emerged. It was quite a meeting!

That was shocking enough but today a few of us met with family members from Nanaimo Seniors Village.

Their story of how people realised what was happening and came together is a bit different from here, and we had a lot of information to exchange.

It has left me stunned, and grieving that I, yes, desperate, left my poor darling in this situation.

I did not know how far below the standards this care was. I grasped it as a lifeline after 12 years living with my love’s dementia. I was on the ropes and thought the sometimes strange, always paltry care was the price he and i had to pay for my inability to look after him any more.

I didn’t know it is not this way everywhere. I didn’t know it is not even what the system sanctions.

It is just too much to process and i will go for walks in the forest and by the ocean before i try to make any sense of it.

And try to forgive myself for my ignorance.

 

 

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