Monthly Archives: November 2016

He’s not getting better

I “know” he’s not going to get better but lately, perhaps freed of the daily – no hourly – no minute by minute – grind of caregiving, it is hitting me hard. I can hardly bear to write it, but he is not getting better and. . . I don’t think he will.

Residual tears pour down my face, after a good long session of howling into the quilts. He won’t be coming back.

I “know” all this – have known for a dozen years and wept -but still, as day by day i visit and he makes less and less of his very own sweet darling nutsy sense (which i have become used to and enjoy), the pain gathers again and again.

Loss by loss by day by day. The news I can’t share, the advice he can’t give.

Last night he had a sense that we two should be going, hit the road perhaps, although that’s a lot of words that don’t make sense to him any more. But a rather fragile walk to look outside was more than enough (as i thought) to quash that,  as he looked horrified at the dark and the lights outside.

He won’t be coming back and we’ll never hit the road again. And I can’t stand this grief.

Over and over, just as we travelled across Canada to his Madawaska river home, over and over.

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A Real Man

Joanna Lumley is taking the trans siberian railway on knowledge tv tonight and stops at lake baikal. She visits a family at a water-access fishing village and, as she tumbles tipsy (all those toasts in vodka!) into bed, nostalgically  describes the family head – fisherman, carpenter, entrepreneur – as “a real man.”

I am suddenly tumbled into memory and grief. Memory of my Uncle Dan, grade 3 education and one of the kindest, smartest, most well-read people i have ever met, saying to me, as he loaded the car with bread and cabbages after my new love and i had visited my family in saskatchewan, “You, you keep this one, he’s a man.”

This is, i guess,  some secret slavic code i have understood from birth for … well, a real man, one who withstands the worst and cares for his woman.

His recommendation of my new love, older than me, an ignorant/innocent very smart jack-of-all-trades from the woods of Ontario, was all the more potent because of something neither my man nor my Uncle Dan knew.

When i was a bud of a girl, my mom made me take my visiting Uncle Dan and Aunt Annie on a tour of Ottawa. We hit all the high spots: the Parliament, the pulp mill, the mint. By the end Annie was exhausted, and Dan shouldered her heavy purse with no ado. As we stood watching the coins pour out of the mint machine, and the crowd oohed and aahed while annie’s feet hurt, my Uncle Dan said softly, hefting annie’s purse,”You can’t take it with you.”

And i thought to myself, at only 13, “So This is a Man.” And never forgot.

Now my man is a shell, a ghost who resembles his former self in looks, but who no longer understands spoken english, who starts in terror at mundane events, who barely recognises me, and has no memory of our life together, who wanders around and around the dementia ward, looking for who knows what.

And i wonder. This is the best we can do for victims of this awful disease. Look after them, fed and clothe them, keep them clean. Entertain them, try for those precious moment of joy.

It is, to be blunt, a humane looney bin. Is this all we will be able to do, as more and more, as millions, are stricken with this disease: Build more and more locked wards for those sentenced to lose their minds?

The Senate has released a major report on dementia in Canada in Canada, calling for better home care, long term care infrastructure, and research. They are right. Tell your MP we need this.

Quick Facts

  • The number of Canadians with dementia will double over the next 15 years to 1.4 million in 2031, up from 750,000 in 2011.
  • The direct cost of caring for dementia patients will rise dramatically to $16.6 billion a year in 2031, compared to $8.3 billion in 2011.
  • The total annual direct and indirect costs associated with dementia are projected to rise to $293 billion by 2040, compared to $33 billion in 2015.

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Waves

After doing, I thought, very well at this new life, even managing to cook dinner for myself once or twice, and getting a lot of work done, I am suddenly trapped in wave after wave of sorrow, welling up unexpectedly, overwhelming me at inopportune times. Talking with friends is sometimes difficult.

I am haunted by the memory of my beautiful man, hunched over and lurching down the hall, calling urgently after a dark-haired caregiver who is scurrying to another patient, “Delores! Delores!”

“Hi Don,” I call, holding out my hand. He wavers, between me and the hall where the caregiver disappeared, back and forth, back and forth.

Lately it is obvious that although he is usually delighted to see me, kissing my hands joyously, he also forgets I am there and wanders off, to confuse another woman with me. This is a mercy for him if he can find comfort in that, and hopefully makes the job a little easier for the caregivers.

But it leaves me remembering our many joyous years and thinking, how did this happen? How did we end up like this? And then i realise I no longer have long dark hair. It has turned grey, as it should, in the passage of time. And all creatures must die, to make room for the young.

I am reminded of words a therapist told me: “Of course you are in grief. Your husband is dying, the long, slow, hard way, fading like the Cheshire cat.”

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