Monthly Archives: July 2016

Who can understand what it feels like? Maybe those with similar stories.

I go to the dementia ward – the forgetting ward – and he sees me and his face lights with joy, as it did when we first met. And my heart rises to his, in unimaginable holy beauty, as it did 36 years ago. And we are joyful for that brief  instant.

Again and again. In the forgetting ward.

There is no denying that it is hard to walk away from my delirious babbling love when it is time for the visit to be over (which is whenever I decide it is). As I hand him over to an aide for distraction, I hear him saying, “Where’s my woman?” Not sure if it came out Woman, or weben or water or heden– it could be anything, because his words are mostly unconnected strings of partial thoughts, lost before they are born.

We had been sitting on a park bench, and he was talking away a mile a minute. Me, “I’m afraid I don’t understand what you just said.”

He grins, “Well, neither do I.”

Me, “Maybe we should just be quiet awhile.” He nods, and holds the intent for at least 30 seconds, and then the “word salad” begins again. We had been dancing at “happy hour” with ginger ale and chips, and we were both rather tired. He kept wanting to go in the car to stay with me, or maybe not, hard to tell what he was saying.

Shortly after I walk out through the triple locked doors, (all with the same code, because no one who lives in there can read or remember a 4 digit code), brushing away a couple of frustrated and heartsick tears, tears of pity and tears of guilt,  I return to my other life.

In my other life, I am a fairly competent journalist and activist, who delights in getting things done and helping others. Who enjoys the struggle, and takes solace in the little garden at our house.

I have decided, in that life, that I am as a widow, a half-a-widow, and allow myself to be grieving, whenever I need to, whether or not the social convention fits. It fits my heart, and helps. I carry my grief with me, tucked away in a special corner where  no one can see it, and turn to it, as if for comfort, during the little rough spots of memory that smack me every day almost anywhere.

It’s not easy, leading this double life, one heart in the care home, the other happily working as always for social change (and to be honest sometimes just to raise hell for the hell of it!), but it is better than before. Then it was 24/7 care at home, sometimes scary, always frustrating, and never ever good enough to bring back my darling to me.

Years ago, after my mother died of a vicious and devastating stroke, I was in the grocery store, saw a strange ingredient and thought to myself, “Oh I must ask mom what she does with that.” At that moment I realised that through the long traumatic years of her paralysis, I had been saving up little questions to “ask mom” when she got better.

Holding on to faint and unjustified hope that our loves will somehow miraculously get better is one of the lesser perils of caregiving. It is part of what makes sending people into residential care so devastating. The end of hope for recovery.

I need to make sure that hope is rooted out of my heart, in this double life.

Six months ago i took Don in to live at the care home. Seems like no time and yet also it seems i have been living in this limbo forever. Still waiting, somehow, for him to come home.

Oh, I know he never will. I know he does not even remember this house we lived in for 9 years. Didn’t really remember it the last year or two while he lived here.

Often when he realises i have come, he takes my face in his hands and delicately, gently, slowly kisses me. And then nods.

Yesterday he was in good spirits but we went to a concert which didn’t suit, and as we left he was very confused and asked, “Have you got a gun?” Frightened too I guess. He never talked about guns in our real life.

A different kind of music quickly got him dancing, several of the ladies eyeing him appreciatively. As he danced, he leaned forward and asked, grinning, “Is that you?”

And as for me…I still wish all this was just a bad dream but I am finding moments, hours, days, of calm when I enjoy my work or a long natter with my dear friends.

I find I have reverted to what I discovered decades ago after a short bout with cancer, when I learned to “just sit.” I slip into that space at any moment, intense being, suspended in time.

I also still have days when I can do nothing, and crawl back into bed for long delicious naps. It is probably a balance between grief and depression, and self-indulgence.

I don’t know what I’m doing and don’t really care where I’m going. I don’t have the ready joy that used to possess me.  But at the very bottom, beneath the tears, there is a quiet peace that speaks to me.

I hadn’t seen too much of Don lately, away at a meeting – which was very interesting to me – and then down with a cold. When I show up, his joy is undeniable, even if sometimes he peers and says, who are you? For years and years, he used that question as a kind of defensive joke, to show he was cognisant. It is not a joke anymore. Worse, he is not even aware of the grim irony.

But this day was to be a bit different, and memorable. As she took us out to the garden, one of the care aides said, “We think you should know that he sometimes confuses us with you, and that means he lets us do things for him easier.” I was a bit stunned, but said, and meant it, that it was good with me if it made Don’s life a bit happier.

We went out to the garden. He was snoozy, and wandering around, talking away to himself a mile a minute, not even caring that no one was listening, or could understand. But in the midst of the endless story, the curtains parted and there was a moment of clarity.

We have always had a rather peculiar sub-verbal communication, answering the other’s questions or worries before they were voiced. Now was one of those moments.

He said in a strange fashion, “Yes if I was going to die, this is the place I would chose to come.” I kind of walked on, ignoring it, not wanting to encourage a conversation about dying.

A little later, stopping and looking at me to mark his careful words: “I don’t mind living here,” he paused, and then added a stern caveat, “SO LONG as you keep coming to visit me.”

I shall choose to remember these words, rejoicing in them as his great gift to me, no matter what the future brings.