Monthly Archives: April 2016

Things have been going well this week, and I felt great although still fragile. Had a good conversation with one of our authors, and went off to a caregivers’ lunch. We talked about secretly hoping our partners would get better, even after all these years. We traded experiences and thoughts, including, ironically, a discussion on triggers and how they are embedded so that your mind has little control over your reactions, until you really work on it, perhaps through tapping or some other therapy.

I was somewhat reluctant to leave that pleasant atmosphere and head off to see Don, and in fact took the long way round, in order to get my head into a better space. I thought i had succeeded, but now I wonder if I triggered him or it was vice versa. Actually there was really no reason for me to go at all. He had been visited every day lately but I was just feeling obligated.

When I got there, he was not welcoming, complaining, although about what I never could figure out. He was just kind of bitter, uneasy, angry, unhappy. “Can’t you see?” I couldn’t divert him for more than a few minutes, although one of the aides succeeded with a happy little dance and hug.

Eventually Don said angrily, the first clear words in an hour,  “I’ve had enough of this. I want to go home.” It has been so long, many weeks, since he took up that refrain and I was a bit stunned. He continued, “Oh you can go on and do whatever you want. I… I will just smash it.”

I left quickly, not being able to stand those kinds of words, and came home in tears, thinking, no more reasonably than he, “You already have. You have smashed everything.”

Definitely “I want to go home,” coming from him, reminds me of all the years I listened to that refrain, and resisted moving into his home, the backwoods of rural Ontario. And that reminds me of all the rest of the trouble and trauma of our relationship, before and especially after he got sick, and before I understood the disease. Powerful and disturbing memories, emotional dependence, lurking, wanting to crowd out the present.

I don’t think I will visit him so often, maybe just two times a week. We’ll see.

Today is Don’s 82nd birthday, and I trucked off to the care home with a couple of slabs of chocolate cake, a card from me and one from his eldest sister, and a book with big pictures as a gift.

I didn’t quite know what to do — I think every other year lately — maybe not last year, I can’t remember – we have had a party at a local cafe with cake and music and friends, Don’s kids have phoned or visited, and it has been a well-marked event.  It certainly didn’t feel right to just ignore it this year. He is not dead, he is having a birthday! But everything i thought of as a present I figured would wind up scaring Don because it was strange (balloons, hats, sparkles, etc) or being a hazard because someone – probably Don – would try to eat it.

Anyway, when I got there, as usual Don was glad to see me, and we walked around awhile, admiring the “Happy Birthday Don” posted on the bulletin board. Eventually it was time for tea, and the gang gathered around, chairs arranged in a circle around the table, the staff standing on the edges.

The cake appeared, complete with candle, and everyone sang Happy Birthday quite robustly. Don said, “Oh is this for me?” and we all ate cake.

I had expected it to be a sad reminder of earlier times, but instead, sitting with the gang and interacting with them, it felt like a satisfying birthday after all.

Later, someone put on some music and most of us dozed off. As I tiptoed away, I heard three of the men singing “Heart of my heart.”

It is now 3 months and 2 days since I left my love in the hands of the care home staff. It still feels temporary. His things are all over the house, in case, I tell myself, he might want them again someday.

But he shows no sign of remembering all those things. There was a glimmer of interest when i brought in his beloved navy book but that now rouses little more than a shrug, although indications are he still waits for “The Navy to send for me.”

I have employed more therapeutic fibbing and told him the navy is paying for the care home, which quells his worries about cash for meals. He recognises me about half the time and is joyous when he does, telling me in his decades-old delusion since we first met, how beautiful i am. He has apparently decided this place, “which must have cost -I am guessing 50 million dollars,” would be a suitable place for us to live together. Perhaps that is why he now accepts my coming and going — after all if you live in a palace there are many things to look after.

On a walk, or rather, stagger, the other day, he bubbled, “Oh I am so happy. I love you so much. And,” he added hastily and firmly with a sideways glance, “Of course I love Delores too.”

“Well that’s good because i am Delores.”

“I knew that,”he chuckled fondly. Hmmmm.

Me? I am mostly blue and occasionally quite content. I am feeling the need to dress in black, to say to the world that i am in mourning. In fact i think i will, to heck with social convention.

Today the home was short-staffed (beyond the revelations in the Seniors Advocate report) and the aides were stressed and busy counting off essential tasks, scrambling to get everyone looked after.

My love sat in a chair, nodded off only to wake up and talk to the air, delicately and elaborately sipping at his fingers one by one. I slipped away and came home to weep.

After a nap — seeing him always makes me extremely tired — I went out to plan my tiny garden, in peace, for the first time in a decade. Ambiguous loss, Ambiguous grief indeed.