Tag Archives: Dementia care-giving

I only want to be with you

I haven’t written here for a long time, partly because nothing much has changed with my guy. Or me, except I am crazy busy.

Yes, I still visit almost every day, and always check, because i need to know he is ok. Sadly I still do not trust the systems at the care home to be on top of that.

He is still going through days long sleep/wake cycles, but maybe now more and more sleep.

The staff let him get up when he is ready, and he is a more amenable camper. He seems mostly content and very often happy.

There are a small group of us family members who have resolved to bring more games and music and joy into that once-dreary dementia ward. The company has few volunteers, and no wonder.

We and the Recreation Dept have flooded the place with magnetic blocks and Big Piece Lego and construction sets and nice noise rattles and big piece colourful puzzles and fiddle muffs and squishy balls. Oh yes and the ever popular dolls and many weird soft fluffy critters. There is a donkey and a huge pink rabbit, among others. Somewhere the mechanical cat has disappeared, but you know cats, it might come back!

Of course it all comes and goes as residents walk off with it, clutch it for hours, and then leave it in random places …  window sills, the hallways, someone else’s room, the middle of their dinner plate, occasionally their own rooms.

My guy is one of the most klepto, so one of our group, (“Friends of 1F”?) made him a spectacular vest, with big pockets for all the bits and pieces, and bells. It also has an encoded message… butterflies, after the “Butterfly Model” which is our goal for dementia care.

That is, while we kick the profit-skimming and lack of due diligence from the government to the curb.

We are doing our best in the ward, feeling our way, and the residents seem to like the cheerful anarchy. The rec dept moved the big table for six back into the lounge area, and it is functioning like a kitchen table – people instinctly gather round. Such a small change and such a big difference. Who doesn’t like to gather round the table where things are happening?

I am overwhelmed with love and respect as I see my friends, both very recent widows, lovingly sing and dance, with just a hint of tears in their eyes, with the residents.

Words cannot express the courage and determination of these women. I can only honour their strength, to come back to the ward where their loves died, in rather poor circumstances. Now they are working  to make it better for others.

Of course to be honest, they are also new uke players. “It was fun,” my dear friends laugh, “We have to practise somewhere!”  Er, well yes, but this was of course much more.

NOTE: Nothing i am talking about here costs much money, just a tiny bit of staff time and a change of attitude. Guess what? This is not a jail, it is a group home!

We have also decided to push forward as a political group, Crying Out Loud for quality residential dementia care. Open to all who want to see this system change. We are just getting organised.  That’s ok, this issue isn’t disappearing overnight and neither are we!

All of that, and our new involvement in the potential class action suit against Retirement Concepts and the Ministry of Health province wide (yes there needs to be consequences) has kept me too preoccupied to write.

But today, I was encouraging my dazed but still upright love, who seemed to not know much of anything,  to go to my friends’ music. He grabbed my hand and said clearly and firmly, “I want to go with you.”

What he has said for almost forty years.

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The Moaning

Time slips by and we stagger, sometimes literally, on. Don remains on his feet but is sleeping much more and both allowed and encouraged to do so.

Fatigue makes him wobbly. A few days ago I was there just as he woke from an afternoon  nap. He was sort of in shock, a bit desperate, shaking, and said, “I’ve got to get out of here.”

Then he started The Moaning. ‘Tis a dreadful fearsome thing. He gets into a kind of evolving moan which takes over his whole being. And nothing breaks through the rhythm into his consciousness.

Even in the face of its piteousness, I cannot help but recall the time at home when he was going on and on… and on.

No diversion worked. Finally I snapped, “Oh Stop that ridiculous moaning.”

In the sudden silence I bit my tongue.., too late, and waiting for the explosion.

“Oh!” he said, “Well, okay.”

And that was that. Silence.

I still laugh. Just one of thousands of delicious memories.

This time however we went out to the nurses station where it was quieter and I got a flannel sheet from the warmer where there is always comfort waiting.

I wrapped him and cuddled him and we sat together until he quieted, then cheered up and agreed he surely was ready for supper.

But what never seems to change, no matter how hard I try, is a secret hidden hope each time I go through those locked doors. Hope that is dashed each day when I see him, tall and skinny, often dressed most peculiarly, as he gets more and more frail and less able to understand this daily world.

“Who are you?” was his affectionate private joke to me for 25 years, but now he really doesn’t know. And the answer makes no sense.

This grief must surely bring some strength, some bonus, some tempering in the fire, but for now all that remains, all that is evident, are the many broken hearts who visit the dementia ward.

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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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Something to ponder

On Friday we went off to Cumberland Day Program to see if Don would accept it better than he did a similar program a couple of years ago, which he still remembers as “that place you were trying to leave me in.”

We went in the back way, avoiding most of the nursing home vistas, and Don seemed to enjoy the morning although he refused to participate in the games due to fear of failure. (I think after awhile he will be ok because the atmosphere is very kind.)  He came home saying “Those are people who are trying to do a good thing,” but by early afternoon he did not even remember the experience. That is actually good news, because if he had found it traumatic in any way, he would remember.

For me, the shock was watching him in a situation where he had to function somewhat without me, and realising how very handicapped he is. He had to be helped to put sugar in his coffee by another guest (not too sure how that worked out!).

I realise I have been probably hiding the extent of his disability from myself because we are always in a familiar environment and I am always doing things for him. I feel strange, as if we are moving into a whole new experience and I need a lot of time to process it.

I wonder too if he is going downhill faster than I can keep up. It will be interesting to see what other people think after next weekend when we are having company.

I am not even sure if he is well enough for the day program and will have to discuss that with the co-ordinator next week.

Certainly we will try because he badly needs the stimulation and the experience.

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