Tag Archives: caregiving

To be clear

Things are going better. The paperwork hangs on – i did his last taxes but just can’t seem to remember to mail the papers.

There wasn’t much so i hope that is all proceeding well. There should be a social service or help for those who.have lost their life partners – everything is hard but some agency could make it easier by helping.

But for me i still get emotional whiplash. Thought i was over the worst and doing surprisingly well, although doing well seems mostly to be presenting a brave happy face to the world.

But tabling for the watershed sentinel at a community event on Sunday … well, i enjoyed it, loved the company, and thought finally! i was ok. I knew i have gotten emotional whiplash each time before, but i thought this time, months later, i had finally swum out of that drowning pool.

And then the backlash. Tonight i remembered how he would always carry the boxes for me, i never had to worry about that hassle.

Then i touched his urn, and it was cold, he would have been complaining.

And again the future looks bleak and empty and i am so alone with only my memories and heartbreak for company.

Better, but not ok, not yet. Hiding it better, but still broken.


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The fog lifts a little

Today for the first time since my love passed, i actually truly enjoyed myself for 2 hours, with no tears, no regrets, and joy in my heart.

Yesterday i went to the beach and that too was good, but every little social outing is completely exhausting. I usually crawl into bed for an hour even after a quick trip to the store. It overwhelms. All those living bodies, each with their own complex stories, just too much.

But today was different.

My friend Linda and I met for brunch at the Wave, a hotel in the Valley which had a bluegrass jam featured.

And oh i was transported – live music! the rhythm, that lovely bluegrass twang, the banjo, guitar, bass, and the fiddle. It was magic and joyful.

My friend of over a decade looked at me and said, “I didn’t know you liked bluegrass that much” and i had to laugh as i said, I didn’t either!

I remembered how my love would be up dancing, as i so wanted to (covid rules say no). And was glad there was no need to try to explain that rule to him. It would have been a nightmare, ending in anger and tears. That is over.

It is a small start – the beginning of imagining a new life, one to be enjoyed, as in his mid stage he so wanted for me. Today for a few hours the pain lifted and there was life and joy on the other side, instead of just endurance. No need to worry about him anymore.

Right now, in this moment, before the fog lowers again, i am interested to see what happens next.


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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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Again and again and again.

I try to count my blessings every day — all the wonderful things we have that make our life easy. Good medicare, and good doctors, wonderful help with caregiving, a nice house, good friends and all the food we feel like eating. This beautiful valley to live in. So many things to be thankful for.

But at the same time, this morning i am obsessed with everything I have given up to this disease, and it is not a small list. Start with our home, our huge market garden, my island community with all its warts and flowers, vast chunks of my lifework (career) gone, the travelling I so enjoyed, both with my partner and, even more, alone. Many of my friendships left stagnant and untended. Most of the stuff we did together for recreation like fishing, exploring, hiking, camping — no, actually all of it now that a 5 block walk has become to him , “Five miles.” My solitude which nourished my soul. Even my privacy. The ability to go for a short walk or take a long shower, or run off to a friend’s house for a quick coffee and a gossip. Sacrificed. All sacrificed for this disease.

Sacrificed while my 80-year-old life partner asks, again, for me to show him how to read a clock. Again and again.

With no end in sight. No relief. No cure. Again and again and again.

Multiply this cost by the millions and millions of families afflicted by this disease. Unimaginable.

Well, the caregiver has come, so now I think I WILL go out for a walk. One small thing that might make a big difference.

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US report on Alzheimer’s

This is a fascinating (well, morbidly fascinating) and up-to-date report on Alz and other dementias in the United States: 2013 Alzheimer’s Disease Facts and Figures. As well as estimates of risk of developing Alz (of great interest because probably the US and Canadian figures are similar) it also includes a look at the financial and physical cost of caregiving.

One sample

• One in nine people age 65 and older (11 percent) has Alzheimer’s disease.

 • About one-third of people age 85 and older (32 percent) have Alzheimer’s disease.

 • Of those with Alzheimer’s disease, an estimated 4 percent are under age 65, 13 percent are 65 to 74, 44 percent are 75 to 84, and 38 percent are 85 or older.

 Sure makes it clear that our situation is not unique.


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