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.