Category Archives: Uncategorized

It was a lovely day. Sun was out, real spring is just around the corner, I had had a good sleep albeit with slightly foreboding dreams and visits from family beyond the veil.

Nonetheless after a few good meetings with friends, there was a bounce in my step as I went through the coded doors,  used sanitiser on my hands (because why play roulette with flu?) and entered the ward.

“He’s still at the table,” someone nodded, although it was closer to lunch than breakfast.

And so he was. Just sitting. Occasionally squinting and reading out letters he was imaginary seeing, “9, V, 70, x….” but there was nothing to see and no, no sense in it at all.

“Hello,” I kiss him gently, calling his attention to me, and eventually he turns. Looks with moderate interest.  “Who are you?” he wonders.

I tell him but it makes no sense. He goes back to staring and  wandering. He has had his bath today and was happy, they tell me.  A welcome change from weeks of fear and resistance. Now he sits.

“But where is she?” he asks,  over and over,  murmuring, occasionally touching my cheek, “So beautiful…. where is she? I don’t know.”

Suddenly, unexpectedly – we have been in so many similar places so many times – the knife turns again in my heart and i cannot bear it. Cannot be stoic.

Why now can I not still the pain which brings tears, no matter how I try to stop? My heart twists and breaks again and again. There is no away from it.

.As I weep,  cry,  bawl, ashamed,  in the middle of the dining room, the staff brings me comfort and understanding and tissues and tea and hugs.

The other residents don’t notice or don’t mind. Nor does he,  except to consider me carefully. They all have their own worlds.

I leave, as he stares with some interest at his lunch soup, and then sit howling in the car.

There is no charity, no comfort in this dreadful epidemic. And I have been drained of all my courage.

We have lost several people at the care home so far this winter — a quarter of the small population in Don’s dementia ward in just 10 weeks. No flu closure, thanks to vigilance and luck, but winter is always a bad time for elders. The pattern of a fall, a broken hip, and then within a short time refusal to eat or drink, is frequent.

Because we, residents, staff and visiting family, see each other often, it is like a village, and a death shakes the whole ward. One can tell when one walks in – there is a sombre mood, quieter voices, sometimes a red or weepy eye — a bed in the hallway and a room with no name on the door, being painted. We are all bound in this together, and gently grieve.

The staff know our loved ones so well, and by and large are able to do this difficult job because they are caring people and fond of the people they are looking after. They are affected by this grim aspect of their job and the situation. It must be very stressful, and I think it takes special people to help the dying, day in and day out, especially the difficult ones with dementia. These are the care workers in the midst of a modern, far-too-hidden epidemic. They don’t get the accolades on TV for fighting a new plague, but their job, grim and tedious, is just as heroic.

A new patient will be along in just 24 hours because the need for beds is so great. You know, and they know, that when a new patient comes in  – no matter how well they walk or talk – and many of them are still reading at a simple level – the same end is now inevitable.

Dementia is not curable, is degenerative, and always fatal.

Nonetheless we carry on. We the family members who visit, miss the ones who no longer come. The staff avoids emotion because the one skill these residents retain is emotional sensitivity.  Once upon a time, last year when my love was better, they carried a body out through the ward. Don and his friend freaked out — deciding that they were being held in the ward to be killed and eaten. They staged a mini riot, tore papers off the walls, overturned a laundry cart. And who can blame them?

But now my love talks only in made up words – syllables that sound like words but aren’t – except when he pauses, with a puzzled look, stares off for a long time and says, “I don’t know….I don’t know.”

I arrived today just as the staff had finished with a shave and a haircut (he was in a mellow mood — many times he won’t let them near him) and we all gave him lots of praise for looking so spruce. Maybe it should have been the staffs’ praise, but he loved it, preening for effect.

So then we set off looking for a place to sit. The manager has addressed a dysfunction in the cleaning system so that chairs are actually returned promptly to the ward after their frequently-required cleaning. At one point there were only 5 chairs for 17 residents. But now the place is crowded — there are chairs, and maybe right now less folks in wheelchairs — so everyone is sitting in the lounge.

We could always go to his room, although it is locked due to all the mobile residents with busy fingers, but there is only a single narrow bed. I suppose i could bring in a couch….but it would need cleaning all the time. And couches for visiting couples is clearly not part of the Ministry directives or even certification. Too bad, but the system is far to busy trying to make sure everyone is fed and bathed and not whaling on each other.

Anyway, no room for a couple to cuddle, and hence the expedition. No minor matter with an unsure and muttering companion, when you have to go through 3 sets of locked doors — each one an adventure and potentially perilous, and needing supervision as it swings closed, according to himself — to get to the lounge. The lounge is lovely and big with high ceilings, almost unused except for the many concerts, and usually there is an empty couch or a couple of chairs side by side.

Whoa, where is this? he wonders as he sinks happily into our favourite couch.

We sit and hold hands, looking at fingers and sometimes counting them, both of us contented with our few magic moments.

Then he turns to me and says clearly and strongly, “I think we — I mean we two — should die together.”

I was startled, but the idea was no longer as upsetting as it was back in the bad days, when i thought the healthcare system had that in mind!

“We will,” I said, meaning it truthfully but allegorically.

He looked at me. “Today!” he stated authoritatively.

We sat some more and thought. I surreptitiously wiped away a couple of surprising  unwanted tears, but he caught me.

“Are you alright?” he asked tenderly.

“Oh yes.”

Yesterday the singer was already playing when i arrived at the Friday afternoon happy hour. Hard to describe, but folks, half in wheelchairs half semi-mobile, were listening, eating chips and enjoying soft drinks.

The new recreation assistant had clearly won his trust, because my love had traversed doorways and the mysterious elevator to go dancing. He was standing, waiting for the next song and greeted me with extravagant joy “Hey!” and a huge hug. We danced and a couple of times he stopped to touch me  with a gentle kiss on the mouth and a nod. “You are the best;  you know everything we know,” he said amid the “word salad” babble. I nodded. I did.

But today he was withdrawn, semi-surly, wavering between acknowledging me and the edge of anger. Once or twice I wondered if he might actually hurt me, which reminded me of those years when we lived together at home, and I never knew when to fear.

And so it is. Now for me it is only an hour this way or that at the care home. And, as another visiting relative said today as i fled, i escaped.

But the emotional whiplash continues.

I live a double life, definitely better than those last years when he was at home, but torn. My new/old/reclaimed life goes on apace, as i explore a new world as an almost-widow and a free creative person. But my old love claims me, calls me with all the strings of our shared years. Make no mistake – down under the layers of delerium, past the restrictions of mind loss – my man is there. I know him as i always have, at the core. I smell his solidness, I see his essence, even as he loses me. Off and on.

People ask me how i can write this blog, be so intimate.

There are a couple of answers.

I want my community to share this journey with me. It comforts me to know you are there.

I want to voice what it is really like, for those, the millions and millions affected who cannot write, so medicine and society get a move on dealing with this agony.

I want to pay tribute to my love and our journey together, our journey now pulling us so unwillingly apart.

Most of all, what i write here only captures the slightest part of what is coming down and has passed. I haven’t touched the pain of the family, brothers and sisters, sons and daughters. I am not dealing with the travesty of health care for these demented elders and their exhausted caregivers.

The writer’s block comes because it is too big a task to write about all that. And I am a more and more frail human as i confront the loving face of this epidemic, and recognise the enormous burden of all the pain – war, racism, injustice – in this world.

Tongue-tied indeed.

January is a very rocky month for me. The dark, the loss of my mother, and of my father, both in that dark and difficult month. And also 2 years ago in January i walked the remnants of my beloved man into that locked care ward, another ending, loss of hope, and end of so many dreams.

But the last week and a half  i have been seeing him every day. Our caregiver friend was sick so it was all up to me. And don had one of those deep-voiced colds he gets.

Thinking and fearing how quickly a closure – a quarantine, frightful and dangerous – can come down, i violated my attempted rule to only see him every couple of days and i have gone every day. Sometimes for 20 minutes, usually for less than an hour, occasionally, when i had time and the right mood, longer.

And i think it’s better. Doesn’t need to be a huge amount of time. It satisfies my need to see him, i feel more cheerful having allowed myself to pop in whenever i feel like it, instead of both dreading and rationing visits, and feeling obliged to stay a prescribed time.

And as for him…. he seems more comfortable with me popping in and out. It is becoming normal to him, lost in the jumbled fog of his head as he is.

I pop in, we greet, usually happily, sometimes joyously, and more and more often, mundanely. Sometimes its “Oh. who are you?” Sometimes “how did you get here?” Sometimes there are only sounds that sound like words.

He knows i am around somewhere and he is clinging less. Often he shadows someone else instead of me – and i slip out.

Myself, i feel reassured that i know exactly how he is, and i am no longer under compulsion to fill time constraints he does not even have. He more and more believes all the people in his head including me are “around here somewhere,” and of course so they are. Our loved ones walk with us everywhere.

And so, for now, this week, this dark month, we reach a kind of blessed in-the-moment peace.

Although it does take more gasoline, even in my little car. Maybe gaia will forgive us for this temporary indulgence. I think she will.

New Year’s is coming up and it is the one holiday of the year when i really miss my love. I remember the very first time in our decades together when he did not make a point of bending to me with a kiss that was a sweet pledge. That first year of the missed kiss, he was more interested in the music (shout out to Flying Debris) and no longer understood what all the other commotion was about.

But a kiss is just a kiss and compared to all the other troubles it is naught. Besides, I secretly stole my New Year’s kiss today, when he was joyful to see me, and said with a hug, “Someday i will get to spend all my time with you.”

“Yes you will,” i said truthfully, not botherimg him to say he already had so done for decades, or that he was firmly implanted in my head, keeping me company all the time.

And we rejoiced together briefly until something distracted.

It was in January 2005 that the doctor confirmed something was wrong. I had suspicions previously but in the months before that appointment Don had had two serious episodes that were clearly some kind of mini-stroke.

The doctor diagnosed Mild Cognitive Impairment.

As we walked out, my love asked, again, “Do you happen to know what day it is?” and I thought “If this is mild cognitive impairment, what’s it like when it gets bad?”

Over the next twelve years i was to learn, slowly and in agony, how much worse it could be.

The first few years were fine — quite livable. We took a great trip to Newfoundland, and a couple of years later a grand trip to Ireland. Now i shudder to think of walking through Heathrow with this thoroughly confused man, but we made it.

On later excursions back to his family in Ontario I learned a couple of tricks — use the disabled washroom because it only has one door.

And i was surprised the first time when Don folded himself gratefully, almost gleefully, into a proffered wheelchair at the airport. After that it became routine: Don in a wheelchair with our bags piled on top.

Eventually all these adaptations were not enough and we stopped travelling. Now it is even odds if he will even venture out of the ward, never mind outside.

But this long slow decline has left lots of time for fear and tears, and for love, for laughter. Even now his personality shows through, making faces and grinning delightedly when we laugh.

As i prepared to leave today, having by distraction and persistence convinced him to eat the blueberry muffin he started out afraid of, I leaned over and kissed him tenderly.

“Why’d you do that?”

“Happy new year,” i said as i stole another sweet moment.

“Thank you very much,” he said with his most angelic smile, having no idea of the content, but feeling the sweet emotion and returning it.

One more new year troth.

“

The day after the Dancing, we sat quietly in the lounge. This took awhile, walking up and down the ward until he was calm, and then negotiating all those heavy doors with mysterious buttons that beep, and then another stroll around the main lounge, hopefully not freaking out any more “normal” residents.

Eventually he agreed to settle and we watched the people come and go, some of whom stopped to say, “Hi Don,”and be acknowledged with somewhat baffled proud dignity. He is not sure why “everybody knows me.”

Then after some calm, he spoke. The words were stammered, staggered, but consistent.

“You are beautiful.” (I secretly gave thanks for this persistent illusion, and for his eye that saw and still sees!)

Quietly, with grave determination, “I want to sleep with you, I want …to live with you….I want to be your husband… we could have a wonderful life together. ”

And, checking out the competition, “Is anyone else after you?”

“No,” I answer, stroking his cheek, “you are my only man. You and me did have a wonderful life.”

But that response is way out of the ballpark we are playing in, and his response is, “Well cmon babe, we’d better get going. Don’t you disappear.”

But of course as soon as we wandered back to the ward and he was distracted again, I did.

It seems to some of my friends that this blog is just a way of wallowing in my loss instead of “moving on” whatever that means. Could be, just as spending too much time with my sweet devastated man flips me into melancoly.

But what’s a gal to do?

Today he was standing eating a banana when i got there, and a quick inspection revealed a rather disastrous new haircut. Perhaps just a half cut, interupted by his impatience or terror,  since the sides were almost shaved and the top flopped over, perhaps in a semblance of the new style, but to me reminiscent of Adolf.

We got a bit of a quick fix done and then trailed upstairs to the Friday party, as we have done so often.

Don was very unsure of the situation but as the music got him dancing he allowed that this place was pretty grand. “I’ve never been here before.”

A timely reminder that every situation, every sentence, is constantly new, potentially threatening, and requires great effort. His trust in me proved once again, to follow up the elevator and into a strange confusing room.

As we danced and i hammed it up a bit i was rewarded with huge happy smiles. “We can do this every night,” he proposed, always eager to spend time with me and always up for a party.

I agreed, but as the old rock love songs flowed, i secretly wiped away a tear or two. How not?

“Will you still love me tomorrow?”

The Alzheimer’s/dementia word is “insight,” when the victim knows that there is something wrong. This can be very painful in the early stages, although even then the sufferer usually is strangely uncurious about the disease, even when enough cognition remains that there is some understanding.

Don and i had several talks about the disease although he strenuously believed that it could not kill. Not that i tried too hard to suggest otherwise.

Occasionally he would express appreciation for my ability to look out for him. Once early on we went to a movie about Alz which showed a man being admitted to a care home – i had thought it might be a way to tell him about the diagnosis – and his reaction was,”If i ever get that bad, take me out behind the barn and shoot me.”

Other times he assured me that the best thing i could do is put him into a care home and go find another man. For a little while, thankfully a short phase, he assessed all the men we knew for their worthiness, despite my protestations. That project too was soon forgotten.

As his disease “progressed,”-more Alz talk- his awareness mercifully became less and less. In the last year i don’t think he knew he was ill, has no idea where he was living, as far as i know – has lost all sense of time and place, except for occasional queries about his mother or the son who still visits.

So today it was a bit of a shock to find him standing in the middle of the lounge area, crying, saying “I don’t know what’s wrong with me. I can’t. … I can’t. ..”

He couldn’t formulate what was wrong but he knew it was not right and it was very confusing. He struggles and struggles because he senses the world should make more sense but his finest tool, his mind, the one attribute he always relied on, has failed him.

It was an insight I would give anything to take away from him again.

Eventually he pulled together and said “C’mon babe, let’s look around –maybe my son is up now.” And so he resumed the endless walking, endless searching – for what he can’t remember, except that it has been lost.

I realize that when people ask, How are you? I do always forget that it is just polite conversation.  I try to instantly evaluate the last few days to answer.

I forget they don’t necessarily know i live a double life, part in this world, and part behind the locked doors with my love, my destiny.

It doesn’t work for me because the sole moment is exactly where my emotional space is. Maybe a better question would be, How are you right now? Because 4 hours ago i was weeping in the parking lot of the care home; yesterday i was walking on air from some worldly accomplishment; but always, if i stop to think before i answer that question, my heart flies to the empty vessel of my beloved.

But that answer is not true to the slowly waking, fragile, unsure joy i find in life, the seasons, my work, and heartfelt friends.

My love is still there, very much himself to him and others around him, walking and talking – incessantly – although spoons and food make less and less direct sense.

One day last week i walked in, and somehow that barely firing brain realised me and remembered. The joy was explosive and unforgettable as he held me.

But for me the memory of his joy brings grief again and again, while for him it is as if it never existed.

Another day when i went in he was vague and babbling, stopping after about 30 minutes to look and say, “Oh is that really you?” When assured that this was the case he burbled, “oh i am so happy. ”

So ask, – thank you – but know that I don’t know which moment in time i will be able to answer from.  Take the reply for the moment it came from.