Monthly Archives: February 2016

Friends ask, somewhat anxiously, How are you? I try to smile and joke a little, but the truth is, I don’t know. I believe it is best not to cry all over one’s friends because they will get sick of it — and you.

And anyway I don’t know. One moment I am laughing, joyously planning the next year’s work for the magazine, reveling in friendships, companionship, and the luxury of human conversation. The next moment, with no warning, I am wandering around the house  in tears, not understanding why this grief, after so long, is still so strong.

I too should be sick of it, although this is the first time in a decade I have really been alone and able to grieve. A few times over the years it overcame me and I cried and cried in my perplexed love’s arms, but mostly I was pretty good, and took my grief “in small bites” in the bathroom, or at the stove, when no-one was looking.

Now it takes me by surprise, jumping out like my love on his happy days when he played peekaboo.

I tell myself sternly that this loss, this grief, is no  more than we all go through, many families with far more horrific losses and tales than this, my heart song. But measuring buckets of grief is like whistling in the rain. And I am half a widow and half not.

I know my friends rejoice that I am slowly regaining my energy and focus, my creativity, my ability to shake off those chains of caregiving.

But when I go to visit at the care home, my love looks at me, and sometimes cries with joy to see me, other times politely asks, Who are you?

They tell me he asks about me all the time.

They also say he is having difficulties finding the bathroom, and this sparks my realization that I spent hours a day and night helping find that place he knew he needed, waking up at 4….or  hastily dropping phone calls… only now when the care home mentions the difficulty do I remember how much time and attention this was taking every day and night. How sleep only came after that last bathroom visit at night was safely executed. No wonder I am still sleeping a full 8 to 10 hours a night, 8 weeks after the reprieve of his admittance.

In a strange moment of truth, I blurt out to the nurse on the phone, “Better you than me” and then gasp and apologize. She laughs and says, “It’s okay. I have broad shoulders.”

The new ad for the Alzheimer’s society has the hashtag #stillhere

It is something hard to explain to outsiders. My love is not the man he was, but he is still in many ways, himself. Considerate of the other patients, especially the women. Gentle and agreeable, looking all the staff in the eye and saying Hi, happily. The same guy who used to leave chopped firewood at our campsites in the morning, in case the next people didn’t have a good ax.

The grief that breaks me like a derelict ship sneaks up like a rogue wave and swamps me. I’d been poking into a cupboard and I find a mini notebook, only the first page written, and carefully tucked away.

Written,  I would guess about 5 years ago, about “God is not dead because he never existed.”

Evidence of the militant but thinking atheist he became, to my surprise, as the illness slowly progressed.

The words cut me, suddenly confronting me with my loss. understandable and I suppose expected, in any bereavement —  but he is not dead. He is in the care home muttering words that make no sense and trying to figure out how to get me to stay the night.

The last week has been a dizzying round of events, at least in comparison to my previous life. Visiting with a multitude of friends at the World Community Film Festival, always an inspiring and thought-provoking event. This year the Watershed Sentinel had its best year yet at our table. (Hope to see you all next year!)

We had a lot of work this week at the magazine, including an important meeting and training an intern to replace lost staff.

A heart-warming visit with Don where he laughed and ate all his lunch while he tried to figure out if we could stay together at his place that night. I thought the lack of reference to going home and referring instead to “his place” was a healthy step forward.

I left with a light heart for a girls’ night with friends, eager to reclaim me into their lives and into the world of laughter and activism. Wonderful but a bit tiring.

The next afternoon we re-converged at Don’s “complex care” ward, and went to hear some music which one of us was playing. I was astounded at how many people i knew were in the building at that time. It was starting to feel friendly and comfortable.

But then they played The Rose, “I say love, it is a flower, and you it’s only seed.” Don, oblivious — I think he doesn’t understand words in music anymore — spent the entire time speaking earnest rubbish, plotting, as far as I could tell, on the means of getting me to “take us home so we could be together tonight, just you and me.” I lost it, barely controlling my tears, and left as soon as we got him down to his wing again. At one time, for many years, that had been “our song.”

Nothing extraordinary in any of this, but when i got to my place I wept again. Perhaps I need to take it slower, a little less activity and a little more quiet time. I am still on the edge of some pretty raw emotions.

Today was another initiation and another step into this new strange life where my love is not in our howlingly-empty house any more–the mysterious special residential care conference. I didn’t know what to expect but it is something scheduled once a year for all residents. Turns out, with no major complaints from me, still revealing in my new liberation, it demonstrated how institutional care should work.

To my relief, our family doctor was there when I ventured in to the conference room. I was quickly followed by two nurses, the dietician, the house pharmacist in charge of drugs, a recreational director, the house doctor, and a huge binder or two of notes and directives. I thought Seniors’ Health would be there too but I guess their job with Don is pretty well done until he needs other diagnosis. After all, we have had many home visits and lots of attention, to get us to this point.

Turns out the care staff collectively knew what he was eating, how much and how, what his bowel patterns were, that he had actually engaged in some specific group activities, what he was saying (where is Delores? Oh get thee behind me, Guilt) and how tired and sleepy he was. All gathered in case notes.

This was an eye-opener to me. They knew more about my love’s daily behaviours than I probably did when I was with him day and night. But they wanted to know what was normal behaviour for him and what was different in this new living situation.

And they were actively looking for solutions to problems, and for problems they could solve.

With the discussion, I felt welcome to participate and started to see how I could mold my skills and behaviours to help care for Don in different ways than at home or he will even imagine. (I will be looking for volunteer minstrels to wander through these special care wards –the more little outbursts of music the better in my opinion.)

After it all, our doctor and I wandered back through all the locked doors to have a visit with Don,  who spoke earnestly and incomprehensibly on various subjects.

As I left, one of the care aides came out to discuss the music issue — they do have to balance the tastes of 20 people — and ended our discussion with her saying, cheerfully, when you come you just start singing and that will remind us.

It will work out to be the making the best of a very bad fate.

When I got home I feel asleep for 3 hours. I woke in regret, thinking about how healthy Don is other than the mind, and how many years I had expected to have where we would camp and travel and fish and hike, enjoying all the special spots across this great country.

Now I need to go write some notes of all the things I forgot to tell the staff during the meeting, not really expecting them to want to know –but they do.