Author Archives: delores663

Time and fate, the roll of the dice, give one no choice, maybe in most of life but certainly with this dreadful disease. Although I begin to wonder.  Thoughts roll around my mind and I eye them out of the corner of my eye. I know not what this means. Yet. But the cauldron boils deep.

I wonder often how we look from the outside, Don and me, trapped in our dynamics. I wonder how the care aides and the nurses see us, they who are now closer to him than I am, in so many ways, including time. They who have a clearer more experienced view of the disease in all its manifestations.

Occasionally one of them says to me, matter of factly, as I react to some development, “It’s the disease. It is how it goes.” And the statement is charitable because this is the knowledge in the dementia ward. Inevitable.

How these caregivers live with this job I do not know. I have suspected for a long time that health care providers (and biologists) are a different kind of  human. They live to a different beat.

So… back to the rabbits. Chatting with an aide i say, “I haven’t figured out yet what it is in his hand.” (He is constantly clutching precious cargo – stoops down to pick up mysterious things and holds them tightly for hours. An inconvenience when dancing, and difficult when eating.)

Oh, she says, “well sometimes it’s bits of dirt on the floor or other precious things – that only he can see – but sometimes it’s the little people.”

Ah, I breathe, remembering that strange Metis-Québécois-Irish mix of childhood stories he has told me over the years.

“Why yes you never know where the little people are. ..   Darting around the corner, on the table, but yes, in his hand. He gave them to me once and said, You have to feed them. So i asked, what do they eat? And he said, That’s what we have to find out.”

Ummm. I can’t help a wonderful joyous belly laugh.

“But,” my informant continues,”it’s better than the rabbits.”

“Ah? Rabbits?” I do still feel in that family way responsible for my beloved’s behaviour although i never did have any control over it.

“Yes. Thank goodness we finally convinced him that they were only white washclothes and he leaves them alone now.

“Oh yes he had all the white wash clothes and the green ones on the floor and he kept trying to force the green ones on top of the white ones. Said they were rabbits and they needed to eat their lettuce and greens.”

I am, as they say, gobsmacked, but also laughing with the universe all the way home.

Our lives are slowly, painfully, diverging, inevitably. As, apparently, time – fate, destiny, all being, the universe -has decreed it must be.

If you had the most beautiful man or lover in the world and they loved you too… if their eyes still lit up when they saw you, after a year in the dementia ward. If all you wanted was for them to come home. And if they uttered, slowly, with lots of misslips, because words don’t work for them much any more, “So when can we go back, babe, back to where we used to live?”

And the answer you give is, “when the snow melts.” But he doesn’t know melting and he doesn’t know anymore what snow is.

Your most beautiful man.

Then he picks up your hand and asks, “Is this yours? It is very nice.” And counts your fingers. One and two are easy, three comes….four, kind of mispronounced, then after a long time a jumbled five.

Your most beautiful man, entertaining you, making you laugh by games with the cheezies, so pleased that you laugh, his love, your love, still there.

Soon you slip away while he is distracted, and go to the car and cry before you drive home to where we used to live.

Empty. Your most beautiful man is gone away but waiting lovingly for you.

Suddenly, at home after a very happy and successful day chatting with friends and colleagues at the Film Fest, I am overwhelmed with such anxiety that i am shivering, freezing, fingers and toes numb, head exploding, running around the house (it being dark and snowing out) aimlessly and too fast. I twirl in the hallway, seeking looking – i don’t know what is wrong.

Finally i stop and try to figure out what’s happening. Not a heart attack, not stroke, not blood sugar. Not… i think!…crazy. What? Don…it must be Don.

In a panic, i quickly phone, and the nurse picks up immediately. “Hi,” I say, trying to sound casual although my heart is in my mouth, “I was just wondering how Don is?”

“Don?” I hear a smile in her voice, “he’s fine. I think he had a good day (status in the special care ward is only in good days or not). I think he’s tucked away for the night already now.”

We chat about being careful driving in the snow tomorrow, and I hang up, feeling the tension drain away and tears of relief forming, but (another victory!) not falling.

So… What? I think this is another version of the pattern i already identified. Too much activity,  too much socialising and then a crash into grief in the following days.

This one was a bit different, maybe less intense. Always for almost  20 years we did a table for our magazine at the Film Fest, greeting friends and making connections. This year i didn’t even think about Don the whole day. I just enjoyed the way our work is progressing and the feedback from all the people who have chosen to be part of it. Saw a couple of great films, discussed points of view and plans with colleagues, enjoyed the company of friends.

I suspect that is the source of what was probably a sort of panic attack. Now that i must – and willingly – give care of my love over to others, i need to get rid of that constant caregiver’s adrenaline, the ever watchful never totally present in the personal now, way of being.

I need to be me alone in the world, which is hard enough for everyone, and to learn it is ok to give up the 24/7 duty cycle. To enjoy a day in my community without stressing about my caregiver responsibility. To stop the reflex which has defined my being for over a decade now. (This is something many many people are dealing with – it’s how the chips fall for many. Nothing to do with me in particular.)

And perhaps release the guilt of going forward without my partner. To heal the Care Givers’ Distress Syndrome.

Wish me luck.

“I love you to the bottom of my heart and that will never change, BUT,” sternly, gesturing around the careroom, “I really don’t think all this is necessary.”

I grinned to myself, reminded of my mother. In her eighties, she was devastated by a severe stroke with total left neglect. My dad moved them both into a private nursing home so he could stay with her, in the misguided belief that he could help her learn to walk again. And she ranted, “I Just don’t know why your father insists on spending all this money on this fancy hotel!”She had some spicey comments about the service at the “restaurant” too, when one of the care aides tried to feed her. “I have never seen anyone so rude. We’ll never go back to that restaurant,” she fumed, as dad pushed her wheelchair down the hall.

Our discussion trails off into nonsense and non sequitur, including another serious interlude: “I’m worried. I’m worried about our kids. Don’t you think you should give them something to eat? See,” pointing to a small lady across the hall, “there’s one of them now.”

I gulp, wavering between explaining for the third time in the hour that the kids are so grown up they are about to start drawing their pensions, or ignoring the issue altogether.

Inspiration strikes and I say, “well we’re having dinner at five o’clock. Do you think they can wait til then?”

“Ah, five o’clock sure that’s good, that’s great!” and my love’s injured mind wanders off into another stream of consciousness.

Thinking back I realise so many things. I can no longer really trace the progression of the disease. For sure, behaviours i assigned as obstinacy or character quirks or failings, some of those I see now as the beginning of the disease manifesting: the clever little inventions for latches or ramps -no need for the hardware store – which he always delighted in, became absurd constructions so elaborate they didn’t work. I remember being exasperated, arguing, “You don’t need to be so complicated. Just put the board here and a nail, and it will work,” and the response was usually him stomping off in frustration.

But as the situation was unveiled, and as i devoured everything i could about dementia and about caring for those with dementia, my attitude changed. In the end, i shut up a lot of the time and it seems to me in retrospect that the disease stripped layers of ego and artifice from both of us.

As a result, we became even closer, more trusting. It seems to me we became stripped down to our essence, naked of artifice because he was no longer capable and i was emotionally exhausted. I don’t count the therapeutic fibbing i became so good at. That was done with no malice.

When we meet now, it is that pure essence which remains and grabs joy in each other’s presence.

I remember when we met 35 years ago, I thought man and woman (in our case – i expect any love is the same) existed to learn the path of unifying with Other, which is our mortal rehearsal for the Great Mystery. Why else such bizarre sexual arrangements! Why such searing agony and overwhelming joy? Why such contentment in simple acts – planting seeds, cooking supper.

But having come that far, now we are stuck in a great grieving birthpang to learn more of the path. The great pain of glory or the bitter inevitable fruit of love?

Yeah. There should be a word for someone who is no longer themselves (not physically, none of us are teens forever!) with a fatal illness but not dead. Or a word for those of  us bereaved this way. The experts – folks who write books – talk about anticipatory grief or disenfranchised grief because the loved one hasn’t died yet.

But what’s the word? What’s the special status? For him or for me?

Revenue Canada has most kindly invented a status for the money of “Involuntary Separation” which helps with part of the issue. So far i have refused to accept that because I can’t bear to acknowledge it. My heart cannot bear it.

Nonetheless we, the partners, both of us, and probably all the people grieving and caregiving their parents with this fatal dementia which wreeks havoc with the person before the body – we need a word, a social status to explain our state.

Do other cultures have a word?

All this is in part brought on because i can’t go see my estranged love right now due to flu at the facility.  My yearning and grief has overcome me, but it is still the grief of separation, as if one of us was on a trip, or we had been quarreling, as we often did.  Not really true as a feeling, because even when I can go back and hug him and hold him, whether he remembers me or not, we are separated by much more than a temporary factor.

What’s the status? What’s the word? This might continue for years. I am not single or widowed. He is most definitely not dead. I hope he is still getting music to dance to.

Words would help. Any one? Any culture?

“Happy New Year, Babe.” And a sweet questing kiss. Every year for 25 years and more. It meant a lot to him and, so,  to me. More than the rest of the festive season.

We did New Year in every kind of way. A fancy party at a pub in Victoria. A cold night in a van, emergency parked due to snow, in an empty school yard in Washington State. Alone in our cabin near Hazelton with the wood fire and the kerosene lamp. Many many years at neighbourhood parties on Cortes island.

But always as midnight rolled around, he was there, grabbing my hand, with a questing kiss, our private troth for the coming time: “Happy New Year, Babe.”

About 4 or maybe 5 years ago, I guess, – he was already ill but still well enough to go out – we were at a small party at Zocallos in Courtenay  and he was more interested in the band than New Years.

I grabbed him anyway and kissed him happy new year. He looked bored at the interruption, completely unimpressed by the champagne, and went back to cheering on the band. New Year was an empty concept to him. Well, it is pretty arbitrary.

And now it is New Year again. He is locked up in a safe ward for dementia not having any idea about time, and i am sitting here, alone and weeping or to be honest, howling.

But I say it for him this year and all the years to come, our troth:

“Happy New Year, Babe.”

Christmas is a touchy time of year for many people, and most of all for those of us who have lost – or are losing – loved ones.

But the staff in the Special Care ward at the Seniors Village where Don now lives turned a potentially-blue Christmas into something amazing.

On Christmas Eve, which always has that soft air of expectancy, whether one awaits Santa, the Christ child, or just Christmas snow, the staff got all the residents into their pyjamas right after supper. They had invited all the families to come around 7 and many many of us did, bringing the children young or grown up, as well. When we got there, everyone was up, and whether in wheelchairs with a warm blanket tucked around, or sitting expectantly, in a quiet pleasant mood.

We ate delicious treats, drank hot chocolate or eggnog, and, with determination if not great skill, sang carols from the songbooks. Most of the residents too sang along to those old familiar, comforting favourites.

Then as the residents began to get sleepy, we were thanked for coming – as if the thanks weren’t all on the other side!

Each family caregiver was given a beautiful card and a rose. I wasn’t the only one choking back tears.

The card for me was addressed “To Babe – love Don” although someone on the staff had written it. Whoever did that though, knew that Don usually called me Babe. It recalled that story of a few years ago when he forgot my name for half a day, and we finally settled, in gales of laughter, on Babe.

The entire night was touched with a magic grace, and will be a Christmas Eve I will always remember.

I went back today, hoping that, as often happens with this disease, the mood had flipped, because I needed the boost.

When I got there, caregiver and residents were dancing or bopping in their chairs or singing to fifties and sixties Christmas rock. Of course I joined in and we all had a grand time. There are some real rockers in that crowd!

Later one of the caregivers told me that last evening (the evening of the day of dying) my darling told her, out of the blue, “I like it here. And I have friends here, and some of them I love.”

So! Maybe not so miserable after all.

I get there and he is looking out the window, leaning over as he always does these days.

He sees me and comes over, “There you are.”

“Yep. So how are you today?”

“Oh  not very good.” I think he might be just a bit worn out since yesterday had been a good time, with non-stop dancing until he said somewhat desperately, “I’m tired.” I took him away because if the music is going, he has to dance. Resting is not an option.

But there was more to it than that. Over the next hour and a half, I get the shape of the issue, which continues despite every attempt at diversion and re-setting the mood.

I have to paraphrase because the words are jumbled just as the anxiety seems all mixed up over many things. Basically, he is pretty sure he is dying soon, or will be dead, “because that’s why I am here.” Not much to say to that, especially since there have been several deaths since he came, although I don’t think it is very obvious to the residents. On the bright side, this time he is not concerned about being killed and eaten, so that’s a kind of progress, and it could be worse.

And he is very worried about “What is going to happen to you and me then?” “Well I know about me, but you?” He also has concerns because he thinks he needs to leave me money, perhaps to pay the bills or some other reason: “At least $100,000, well, maybe not that much.”

He tucks my arm in his and says, “Don’t cry, don’t cry.”

I get him busy pushing a sweet Newfie lady around, and hurriedly leave, with my heart bursting and tears falling as soon as I reach the car.