CaringCV

Oh there you are. You come every day don’t you?

Yes I come to see you every day, because I want to be with you.

Will you always come?

Yes I will always come (mentally crossing my fingers behind my back, since i don’t come every day, but usually 3 or 4 times a week).

It will be you and me together.  Forever, even after I…..?

Yes. Forever.

Good. That’s how it should be. That will be alright.

Often unnoticed i am doing things differently since Don “moved out. “

First of course, the wording. He didn’t exactly choose to move, but on the other hand it was his disease that caused this cataclysm. In any event, those are the words i have found myself using.

But here’s more of the things i notice. Not things i am doing from deliberation.

* Making my bed every morning. Where’d that come from? Never since i decided girl guides was not for me have i made my bed every morning. Now it just seems like a good thing. Huh?

* Buying original art – not going nuts -only 2 pieces – but just buying stuff i want in my life. Never ever would have thought of doing that. Just suddenly happened.

* Singing aloud little chants and tunes. Suddenly i am living alone and the neighbours can’t hear with the windows closed. Who knew i was a secret bluesy rappy poet?

* Accomplishing large amounts of work in publishing without even noticing. And saying No to much of the endless make-work — the pointless petitions, meetings without purpose, indignant junk news —  that seems to be a hallmark of our times and used to dominate mine.

And, of course, sleeping in until 9 or 10 in the morning, partly because i seem to still need a lot of sleep, but mostly just because, for the very first time in my life, I can.

I hope there is more to come, because surely the price of all this pain should be some great flowering, enlightenment or more! But for now I am feeling the sun come round again and watching for the green shoots to emerge from the thawing ground.

4 months after i first wrote this post, i notice i am now calling it, “since Don left,” which seems satisfyingly accurate … he left on his life journey. I still visit him most every day or two but it is clear this is only a shadow of my man. Still him. Still trying in his totally impaired way to look after me. But he left on his journey – the one trip  we can only do alone.

His care for me is still evident. Questions about money, about the car, about the men, “Are they grabbing at you?” Not jealous.

And today, out of nowhere, playing with the forks and spoons, not interested in the food, but momentarily intent, “Are you feeling stronger now?” to which i answer, honestly, a bit surprised, “Yes, yes I am.” “Oh good, i knew you would.”

And we go back to playing with the soup and sandwiches, me blinking at that same strange intercept we have always had, for 35 years,  where the words seem as if they were random but they speak to what matters. The feeling of being in the presence of something, of the universe shifting into focus for those brief moments, an enormous syncronicity, and gone as my mind, agape, wanders weakly back to lunch.

I bounce down the hall and into the special care ward, practically with a song in my heart, feeling good. The place is pretty quiet, and I spy my love sitting firmly in a chair.

This is good because for far too long he has lurched along on aching feet. I approach, as he sits motionless. Not agitated, not sleeping, not talking to himself as he often does. Just sitting, thinking, I guess.

“Oh look at that beautiful face,” he greets me. “Who are you?”

We get through the preliminaries and i don’t know if he really remembers who i am, but he is happy to hold hands as we talk. “I guess we’ll being heading to Ontario soon,” he suddenly says clearly.

“Yes,” I reply. “But not right now.” I feel my heart begin to tear apart but try to ignore it.

“Do you have enough money?” he asks.

“Yes, there’s lots of money.”

“Oh good, I was thinking and thinking to see if we had money. I love you all the time. ”

By then I am shattered and tossed helplessly in grief again. “I’m sorry I’m crying.”

“Yes,” he says calmly, “I see that.”

And, with much deliberation, some apparently aimless fussing, and a lot of confusion about the tea, the spoon, the food, we eat lunch and I come home until the next time.

Don today pretty calm. Very interested in hanging around the nurse and the med cart. Pretty good for 4 pm when he has been usually sundowning. Happy to sit down and rest. Asked me who i was and where delores was. Having trouble pronouncing my name. Asked me at one point, “You’re Jim aren’t you?”

But overall he seems to be a bit more content, more bemused than frightened, and that has lifted my own spirits too.

A tiny tiny tiny touch of anti-anxiety med might be helping him. Time will tell but it has been 3 weeks since any paranoid expressions. Just hoping, because to lose him,  have him confused and ill AND in fear is more than i can bear.

As for me, some heavy duty absorbing work, spring, and the tiny pea shoots in my small garden, along with knowing don is comfortable, have lifted my spirits.

Despite the odd diversion into regret and a more accepting grief,  I wake calm and happy, eager for the day. I have no grandiose plans or ambitions, but i am content with daily life. This is one of those periods when i count our blessings, and include our public health system among them.

Despite my anxiety and angst, The Birthday turned into another party, because of the great staff at the care home.

When i got there, Don was a little querellous, and not interested in anything much that i had brought – a balloon, a soft stuffed rabbit, some coloured papers and a card. He seemed to think i was up to something (hmmmm, i was sort of annoyed at the time, but come to think of it, i guess i was!)

But we moved into cake mode and soon almost every patient and lots of family were gathered.

Don joined in singing Happy Birthday as the cake was lowered in front of him, stopping and throwing his hands out in astonishment when we got to “dear Donald.” This led to general laughter and lots of sharing, with a few more cards and staff drifting in from here and there.

Later we went for a walk, garnering more well wishes, and he expressed a few thoughts.

First, “83. …. I’m old!”

Then, happily, “Did you see? All the people came!”

It was a lovely little joyous party.

With some shock i am coming to grips with realizing that Don’s birthday is in 2 days. And…so is the car insurance due! I have been avoiding all this and i don’t know why, really.

For years now i have been making a big deal of the day – parties, dancing, his children visiting.

Someone noted, when my own birthday passed almost unnoticed last month, “of course it was always don’s birthday we all celebrated .”

Yep. As I wanted it. And last year there was a nice party at the care home, but this year…i don’t know.

I don’t think Don understands a concept like birthday, now. Last year he was pleasantly surprised but this year? I guess i am a bit disheartened. One can only “keep up the side”(whatever that Brit expression means) for so long i guess.

All i know is that tears are creeping up and quickly dissipating. A campaigner phones for the election and i explain Donald cannot come to the phone because he is in long term care with severe dementia. I am almost casual about it, but later, once more, the tears come unbidden, and leave as quietly, because, perhaps, i am just cried out, worn out.

So what to do about The Day? (Ironically Easter Sunday this year). I am thinking to go shopping for cool stuff tomorrow – doodads that might amuse or entertain or enchant – i will look at the dollar stores (tricky because most of their stuff is not …. safe) and at the toy stores. And buy a soft chocolate cake for tea for everyone on sunday.

Don’t know what else to do. We’ll see how that works for him and for me.

The next day, when I walk into his room, still perplexed about the birthday issue, I had to say Hello several times, as he slowly focused on my smiling face. “Oh,” he said, “You’re lovely.”

As we hugged, he stepped back and looked carefully again, and asked, “What is your name?”

“Delores.”

“Yes,” he said, “She’ll be coming later this afternoon.”

Later as we walked he said very clearly, “I just want my life back. I want to go to Slate Falls and stay there and that will be the end of it.”

“Soon,” I answered, “Soon but not yet.”

And came home and cried and cried.

So today when i got to the care home after a satisfying day of geeking out on bookkeeping, my love, not standing too crooked for a change, had been dancing to the Beatles.

It was pill time and everyone was clustered around the cart with lots of opinions and viewpoints on. .. well, whatever was in their heads at the time.

“Dancing?” said Don, focused on the floor as he did a little demonstration shuffle.

“Hi Don,” i waved in front of his face. It took a little while and then we had our usual joyous reunion. The one i mean as much as he does. The one that succours me.

After the stroking and hugging were over — “Look at this.” He proudly showed me a …toy… a kind of rattle-looking thing (my heart dropped) but also a kind of light. When you pushed the right button -a very  tiny red button hard to find – a swirly light show started inside the globe.

It actually is a really cool thing. I loved it.

“You are such a sweet man,” I murmered, still under the influence of the hugging, but then cracked up when, shyly boasting, he said matter of factly, “well i’ve probably been like that all my life.”

He had gloamed on to this light thing this morning, the staff told me, and been very pleased with it all day long.

We went for a little walk down the hall and i asked, delighted  – where did you get this?

“Well,” he said laughing, “I expect I stole it.”

The rest of the visit was just as lovely and at supper i handed him into the capable hands of a lovely lady who invited him to his table.

When i got home I remembered how he always insisted flashlights (and clocks) would be wonderful presents for his grandkids. And remembered how his finger pushed up reflexively  to try to turn this new magic light on, as we did with our old flashlights.

Then i recalled how, about a year and a half ago, after his – no my! – first respite away, I unpacked his bag to find a remote control inside a sock. “Oh yes,” he said, grabbing it and  smiling proudly, “I made this and brought it home for you. Look!” and beamed as he pushed and the light of the remote glowed from inside the sock.

An hour later, i remembered he grew up in the deep country, in a childhood populated by ghosts and little people. In dark nights. How fabulous the flashlight must have been, and now, in sweet grace, another magic light has brightened this diamond day.

Maybe it was the sunshine, the spring starting to move, or maybe it was the energetic reminder from all the Chuck Berry music in the last day, or maybe it was just a good day. But today I have been strangely happy all day long.

Thought about politics, faced the liklihood of a new korean war, did chores, went shopping even for sanitary items for don, which usually puts me into grey or brown areas, had a nice visit with a friend and left when i felt moved to do so,  all with a smile on my lips.

Don gave me a huge lovely hug, but he was still wrapped in his fear, afraid to step out into the sunshine and we sat and talked… a tear or two crept down my cheeks as it has lately when i see him, but he was as fine as he can be, and i left.

Came home and spent some time investigating the chaos in the strawberry bed. Then i actually deliberately cooked a nice dinner for myself instead of the usual haphazard foraging.

A normal messing around the house happy day. No big deals, no treats. Just a normal happy day. I haven’t had a lot if them for the last…decade. Can barely verbalise the hope that life might have that fine savour for me again, despite the inevitable pain to come.

We all have to die to make room for the young ones and that too can be good.

A day or two later, after our uneasy nap,  I learn that Don was “quite agitated” and even aggressive with the care staff. He is still, despite his aged disability, strong enough – and in any event staff can’t respond to force with force.

They had phoned me to come help, faint hope since i could never calm him at home, just drug him and endure, trying not to aggravate his paranoia, alone in the house, afraid to move, in the middle of the night.

It reminds me how i sometimes – often – feared for my own safety. I went to the police and told them the situation -“if i call, i mean it, but there are no guns in this house.” They nodded and to my gratitude i know they took it seriously and remembered.

So now in the care home an uneasy few days got worse and they had to use more drugs. It might be horrifying to those who haven’t been captive to paranoid rage, who somehow believe the use of drugs is evil, but i know it is a last resort. To me, looking from the inside, it seems a mercy. I know all the staff are trying to figure out what the triggers are, as i, untrained and inexperienced, also did.

And i remember how he whispered the other day when i was hoping we would nap, “You don’t know if there are any guns here, do you?”

Only the memories of other paranoid breaks remind me now, a couple of days later, of those forgotten, despairing words and my strange drop of the heart, the dread, (oh no, not that again) as i answered cheerfully, No, no guns here.

Thankful, to be honest, that i would not have to lie awake and fearful beside him that night, in case i became the object of his fear. I don’t have to do that anymore.

It is an amazing  great relief. I am so thankful that i do not have to do that anymore.

Today my love was so confused and obviously exhausted that i lay down in his bed with him to try to get him to nap. But just like often at home, he was so wound up that he would sleep for a few minutes and then start talking, “Guess i better get up, guess it’s time to go.” … Looking in surprise at me, “Oh who are you?”

Those were the coherent comments among a stream of consciousness. He barely knew me, took no or very little comfort from our old ritual of lying down for a nap

He looked more debilitated than ever. I quietly wept as we lay restlessly together.

Even though the care home is doing their best, nothing but nothing can stop or change or reverse this slow motion tsunami that is sweeping away his brain and sweeping him away from me.

I try hard to choke back my wails (there are neighbors) but nothing can make any difference now. My love is most unwillingly deserting me. This love has been at the core of my being, gave me the loving encouragement over almost forty years to be me.

My world is ending in slo-mo, as it has over the last decade. I mourn alone at night, and smile in the day.

But everything is not okay. And the one i go to for solace cannot help me anymore.