Monthly Archives: March 2017

So today when i got to the care home after a satisfying day of geeking out on bookkeeping, my love, not standing too crooked for a change, had been dancing to the Beatles.

It was pill time and everyone was clustered around the cart with lots of opinions and viewpoints on. .. well, whatever was in their heads at the time.

“Dancing?” said Don, focused on the floor as he did a little demonstration shuffle.

“Hi Don,” i waved in front of his face. It took a little while and then we had our usual joyous reunion. The one i mean as much as he does. The one that succours me.

After the stroking and hugging were over — “Look at this.” He proudly showed me a …toy… a kind of rattle-looking thing (my heart dropped) but also a kind of light. When you pushed the right button -a very  tiny red button hard to find – a swirly light show started inside the globe.

It actually is a really cool thing. I loved it.

“You are such a sweet man,” I murmered, still under the influence of the hugging, but then cracked up when, shyly boasting, he said matter of factly, “well i’ve probably been like that all my life.”

He had gloamed on to this light thing this morning, the staff told me, and been very pleased with it all day long.

We went for a little walk down the hall and i asked, delighted  – where did you get this?

“Well,” he said laughing, “I expect I stole it.”

The rest of the visit was just as lovely and at supper i handed him into the capable hands of a lovely lady who invited him to his table.

When i got home I remembered how he always insisted flashlights (and clocks) would be wonderful presents for his grandkids. And remembered how his finger pushed up reflexively  to try to turn this new magic light on, as we did with our old flashlights.

Then i recalled how, about a year and a half ago, after his – no my! – first respite away, I unpacked his bag to find a remote control inside a sock. “Oh yes,” he said, grabbing it and  smiling proudly, “I made this and brought it home for you. Look!” and beamed as he pushed and the light of the remote glowed from inside the sock.

An hour later, i remembered he grew up in the deep country, in a childhood populated by ghosts and little people. In dark nights. How fabulous the flashlight must have been, and now, in sweet grace, another magic light has brightened this diamond day.

Maybe it was the sunshine, the spring starting to move, or maybe it was the energetic reminder from all the Chuck Berry music in the last day, or maybe it was just a good day. But today I have been strangely happy all day long.

Thought about politics, faced the liklihood of a new korean war, did chores, went shopping even for sanitary items for don, which usually puts me into grey or brown areas, had a nice visit with a friend and left when i felt moved to do so,  all with a smile on my lips.

Don gave me a huge lovely hug, but he was still wrapped in his fear, afraid to step out into the sunshine and we sat and talked… a tear or two crept down my cheeks as it has lately when i see him, but he was as fine as he can be, and i left.

Came home and spent some time investigating the chaos in the strawberry bed. Then i actually deliberately cooked a nice dinner for myself instead of the usual haphazard foraging.

A normal messing around the house happy day. No big deals, no treats. Just a normal happy day. I haven’t had a lot if them for the last…decade. Can barely verbalise the hope that life might have that fine savour for me again, despite the inevitable pain to come.

We all have to die to make room for the young ones and that too can be good.

A day or two later, after our uneasy nap,  I learn that Don was “quite agitated” and even aggressive with the care staff. He is still, despite his aged disability, strong enough – and in any event staff can’t respond to force with force.

They had phoned me to come help, faint hope since i could never calm him at home, just drug him and endure, trying not to aggravate his paranoia, alone in the house, afraid to move, in the middle of the night.

It reminds me how i sometimes – often – feared for my own safety. I went to the police and told them the situation -“if i call, i mean it, but there are no guns in this house.” They nodded and to my gratitude i know they took it seriously and remembered.

So now in the care home an uneasy few days got worse and they had to use more drugs. It might be horrifying to those who haven’t been captive to paranoid rage, who somehow believe the use of drugs is evil, but i know it is a last resort. To me, looking from the inside, it seems a mercy. I know all the staff are trying to figure out what the triggers are, as i, untrained and inexperienced, also did.

And i remember how he whispered the other day when i was hoping we would nap, “You don’t know if there are any guns here, do you?”

Only the memories of other paranoid breaks remind me now, a couple of days later, of those forgotten, despairing words and my strange drop of the heart, the dread, (oh no, not that again) as i answered cheerfully, No, no guns here.

Thankful, to be honest, that i would not have to lie awake and fearful beside him that night, in case i became the object of his fear. I don’t have to do that anymore.

It is an amazing  great relief. I am so thankful that i do not have to do that anymore.

Today my love was so confused and obviously exhausted that i lay down in his bed with him to try to get him to nap. But just like often at home, he was so wound up that he would sleep for a few minutes and then start talking, “Guess i better get up, guess it’s time to go.” … Looking in surprise at me, “Oh who are you?”

Those were the coherent comments among a stream of consciousness. He barely knew me, took no or very little comfort from our old ritual of lying down for a nap

He looked more debilitated than ever. I quietly wept as we lay restlessly together.

Even though the care home is doing their best, nothing but nothing can stop or change or reverse this slow motion tsunami that is sweeping away his brain and sweeping him away from me.

I try hard to choke back my wails (there are neighbors) but nothing can make any difference now. My love is most unwillingly deserting me. This love has been at the core of my being, gave me the loving encouragement over almost forty years to be me.

My world is ending in slo-mo, as it has over the last decade. I mourn alone at night, and smile in the day.

But everything is not okay. And the one i go to for solace cannot help me anymore.

Time and fate, the roll of the dice, give one no choice, maybe in most of life but certainly with this dreadful disease. Although I begin to wonder.  Thoughts roll around my mind and I eye them out of the corner of my eye. I know not what this means. Yet. But the cauldron boils deep.

I wonder often how we look from the outside, Don and me, trapped in our dynamics. I wonder how the care aides and the nurses see us, they who are now closer to him than I am, in so many ways, including time. They who have a clearer more experienced view of the disease in all its manifestations.

Occasionally one of them says to me, matter of factly, as I react to some development, “It’s the disease. It is how it goes.” And the statement is charitable because this is the knowledge in the dementia ward. Inevitable.

How these caregivers live with this job I do not know. I have suspected for a long time that health care providers (and biologists) are a different kind of  human. They live to a different beat.

So… back to the rabbits. Chatting with an aide i say, “I haven’t figured out yet what it is in his hand.” (He is constantly clutching precious cargo – stoops down to pick up mysterious things and holds them tightly for hours. An inconvenience when dancing, and difficult when eating.)

Oh, she says, “well sometimes it’s bits of dirt on the floor or other precious things – that only he can see – but sometimes it’s the little people.”

Ah, I breathe, remembering that strange Metis-Québécois-Irish mix of childhood stories he has told me over the years.

“Why yes you never know where the little people are. ..   Darting around the corner, on the table, but yes, in his hand. He gave them to me once and said, You have to feed them. So i asked, what do they eat? And he said, That’s what we have to find out.”

Ummm. I can’t help a wonderful joyous belly laugh.

“But,” my informant continues,”it’s better than the rabbits.”

“Ah? Rabbits?” I do still feel in that family way responsible for my beloved’s behaviour although i never did have any control over it.

“Yes. Thank goodness we finally convinced him that they were only white washclothes and he leaves them alone now.

“Oh yes he had all the white wash clothes and the green ones on the floor and he kept trying to force the green ones on top of the white ones. Said they were rabbits and they needed to eat their lettuce and greens.”

I am, as they say, gobsmacked, but also laughing with the universe all the way home.

Our lives are slowly, painfully, diverging, inevitably. As, apparently, time – fate, destiny, all being, the universe -has decreed it must be.