Author Archives: delores663

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.

I have always enjoyed being alone, and have relished the last few months. But as i sleep less (down to 9 hours now) i find a strange contradiction. I have time and space now but so many of the things i used to enjoy have lost their edge. Some days I can barely do anything and often crawl back into bed to stare at the wall. Then just as I am about to give up, the next day I will be happy and energetic for several hours.

And then crash again. Drifting, not sick, not well, floating in time, not even waiting … just nothing much.

There are so many things i should do, could do…clearing out papers, getting some new furniture, reading something besides mysteries, hiking, wash the bedding so it can dry in the sun, visiting friends, studying something…but i just…don’t.

I realize part of the fun of gardening, of a new recipe, of my work, of most daily life, was sharing it with my love. In the past, when we worked our large vegetable garden together, i always felt this was what my world was meant to be, a man and woman working together on the land. All was right with the world.

Now i am howlingly lonely but have little wish for company.

This must be the same with any bereavement. Nothing unusual.

The only evil twist with this dementia is that every once in awhile i go see don, longing for his company. His body is there and we share a kiss, holding hands, but there is no comprehension, no conversation, to slake this enduring  loneliness.

Back from a great and satisfying working weekend with friends and colleagues, and a little disjointed from conversation and travel removed from the daily routines, I trucked off to the care home to see my love.

The last couple of times I had  visited, he had wandered off several times to engage with the other patients. Not too sure anyone can follow these social interactions but the other people don’t seem to mind and frequently respond.

Our caregiver friend had reported that on the weekend Don had been busy pushing a friendly little lady’s wheelchair. Although pleasant and cheerful with her, (must be be a great relief to my friend after the days of miserable abuse he had heaped on her during our less happy times), he soon left to continue the wheelchair journeys.

When  I got there today his face lit up, he seized my hands and talked about how pretty I was and how much he loved me. Soon, though, I could clearly see the effort he was putting out to try to figure out about the car and arrangements — what, i have no idea, although he relaxed when i assured him there was lots of money.

I am beginning to wonder (duh?) if i am associated in his mind with obligations to look after me and us, and if that is what was stressing him so much at home. It could be that kind of unresolved responsibility was part of the horrendous stress, especially since he never did believe i could look after myself. To be honest i  have been much better off until recently in almost every way – although not all – since he came into my life, so this is not entirely sexist delusion on his part.

In any event, the (other) lady sitting beside him asked for help and he jumped up to give her a hand – two rather affectionate hands – to pull her to her feet.

He wandered off with her for a moment and then came back. “Did that bite you?” he asked seriously.

“Not at all,” I smiled, trying not to chortle.

Soon he was off again, talking to a guy who was seated for dinner, and wiping off his table for him, over and over. When you have no short-term memory, you remember planning to do something, but don’t remember doing it.

(First really clued into this about 4 years ago when don was reading something from the paper and read the first two sentences over and over. At first i thought the paper had really messed up, but as he started the fourth repetition, i took a look and realized what was happening. Just another memorable moment. I have no idea how many weeks or months he had been struggling like that with his reading, a skill we are far beyond now.)

Today, the last i saw, he was peering out the window at me as i slipped away, but i am pretty sure he quickly got re-involved in his new world of social relations.

I have heard about this from other caregivers: their partners dismissing them because the here and now of life on the ward is more important. If this is starting to happen for my love, I rejoice, thankful for him and for me. But i admit i do pause to wipe away a few tears at the bitter blessing of this next coming stage of loss and separation.

After 4 months of sleeping 8-9-10, even 11 hours a day, I seemed to bounce back with the spring sun. I awaken with the same relaxed joy now as before, but with only 7 to 8 hours sleep. I tell friends i am doing better, and i am.

But even now, often —- maybe usually — after a visit with don i need to nap. I think it is just needing to take the time to recover – short-circuited every day because there is no end. There may never be an end to these reverberations. An emotional amputation.

Today was an interesting case. A neighborhood garage sale had me up way early. It was all low key and kind of fun. But several hours of standing in the sun left me wiped.

Then i had another crowd scene to check on the Watershed Sentinel stand at Cumberland’s Empire days. Scores of great and joyful booths and a great time.

Thanks to a friend i was able to take off early. Got home and fell asleep for 3 hours.

So much for recovery. I am just weak, physically and emotionally.  I think this opens a door to the spiritual but I need to decide to walk in. The last time i did was almost 40 years ago. I never regretted it, but it took years to reconstruct an outer shell that worked in this “real time” world.

And all the while Don’s voice echoes in my head. Today it was from our dancing yesterday at happy hour at the care home. (Pop instead of booze, but music and laughter amid the dozing and the wheelchairs). Whenever he realizes it is me, or rather, that i am his woman, because i don’t think he really remembers me anymore, just the feeling of our life and love, he gets very busy figuring out how we can spend the night together although “Not to do anything.”

Back in the care wing — “There will be supper here” “oh do you have money?” — I somewhat absently-mindedly stick-handle the inquiries about where we would sleep together that night, made more difficult because all the cells in my body  too agree we belong wrapped together happily snoring.

Then in great comic relief, the staff start a little joking around skit with lots of innuendo. We all are laughing, in a quick and wonderful release, as most of the patients sleep.

Don, surrounded by laughter that makes no sense and focused on his driver who will get us wherever — the magic home — says tenderly, “Maybe you shouldn’t have any more to drink, what do you think, babe?”

I say, “I think you’re right.”

More and more as time goes on I wonder just how disabled Don was for how long. Little things catch my mind.

I happily throw my dirty clothes in the laundry basket, and suddenly realise that could have never happened before because don would either get pissed off that i thought his clothes were dirty, or confuse it with throwing the clothes out, or – well … just get po’ed and sulking and unpredictable in ways I always danced on hot coals to avoid, because one never knew where that anger born of confusion would go. “You think I’m stupid. You took my driver’s license.”

What a flash back, from the simple act of carelessly tossing dirty clothes in a laundry basket. My stomach and my head start to ache.

This is some kind of weird PTSD I suspect from the ongoing trauma of walking on eggshells for years and years. All the stuff that never shows up on that stupid mini mental test….

Now i have a safe place to explore that a little, but i sure don’t want to get sucked down into it in detail, because now is about now, not then.

But i do think i need to see, identify and label the echoes, perhaps learn to sing or drum them out of my day to day life? I am serious about the sense of being a trauma-survivor.

——

A couple of weeks after I wrote that, I get up fine one morning and, out of nowhere, am overcome by memories. One holiday evening a few years ago, I fell and cut my hand, rather deeply and badly. As I tried to wrap towels around the cut, and realizing i could not drive, and a cabbie would not want me bleeding in the car,  I said to Don, who was dancing around in panic, “Call 911.”

“I don’t know H-O-W,” he wailed, wringing his hands. I got to the phone, and as I explained to the operator, I realised Don could never have expressed what had happened anyway. The ambulance came and the paramedics, of course, were wonderful. They took Don in the front and we went off to Emerg. The intern was a bit gleeful about the chance to probe and stitch, which was very painful. But she positioned herself so Don could not see, and he sat in a chair beside the bed, quietly weeping. (It turned out that it was a very lucky cut, missing an artery by about a centimetre.)

It was just around that time, that the Home and Community Care people came to make an assessment of what help we needed. I felt strongly that it was unsafe to leave Don alone, but they seemed skeptical. They asked, “If there was a fire, what would you do?”

Don thought awhile and replied, brightly, “Do they still have 911?”

They nodded and checked off a box on their form. They never asked if he knew how to use a phone. 

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.