Luck is relative

I am watching a programme on organ transplants. A suffering family is told that their beautiful son was brain dead in 20 minutes, and I find myself screaming enviously at them all as they grieve, “You are so fucking lucky!”

They don’t have to watch their love’s brain dying year by year month by month, while he no longer knows what is happening. My love struggles gamely on but the confusion is almost universal and the moments of joy are dampened by the dullness in his eyes.

Death is our part to play in life. Fair enough – but this is slow-drip torture.

 

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Tonight

The music had already started when I got there after a couple of hard days’ work. He was sitting securely in the front, with no real expression in his face. No real recognition either. A bowl of ice cream was devoured in globs, and then I coaxed him up to dance. Never had to do that before.

Occasionally a big smile would cross his face and once when i did a twirl away he quickly grabbed my hand and gathered me into an embrace, saying, “Don’t leave me.”

The singer played “Can I have this dance for the rest of my.life,” and to.my embarrassment in the middle of the special care ward full of folks having a good time, I was suddenly brushing away tears.

They got chased away by a few fast dance tunes, and Happy Hour at the care home was over.

“Come with me,” I said. By now he was happy and agreed. “Where will we stay?” I suggested supper was coming soon and he thought that was good but on the way back to his ward he asked, “will we stay together tonight? where will we sleep?”

Somewhat later, a little unquiet, he held me and stammered, “Forget me.”

I don’t know if he meant: don’t forget me; or forget me. He sometimes thinks long and hard to deliver messages in the rare moments when the clouds clear a bit. But I hugged him and assured him I would never forget him, and, although there was confusion his eyes, it seemed to be good.

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Lucky man?

I get in on a rainy Saturday afternoon, after a stretch pruning last year’s raspberries, feeling pretty good.

I have new zelcrow closing shoes for him – he’s been wearing them for years and likes them, takes them on and off at will, not necessarily to the joy of the care staff.

To my surprise he was up and fairly … amiable. He had no idea what shoes or new shoes were, but sat down and let me make the switch, talking a mile a minute.

But in that strange way, not as out of it as he seems. At one point my hand collided with his, whereupon we had the full scale collapse, leaning back in the chair moaning, eyes closed but zero anguish on his face. I laughed and called him a great actor and he sat up immediately and said, “well, yes!”

Such a confusing state of mind.

I also brought his ipod and popped the headset on to play Robert Plant Band of Joy, one of our old favourites.

He said oh that is so beautiful, and started to dance. We played the whole CD and he was joyous.

Me I had to be very stern with myself not to get dragged into grief remembering all the times we listened and danced…Music mostly makes me cry now.

After awhile he leaned over and asked demandingly, “But Who are you?”

I started out with my name but it was ringing no bells, so I said, “I’m your wife.”

“Really? I never heard of any of that.”

I smiled my hardest. “Well here I am. Aren’t you a lucky man!”

And the smile crept into his eyes and he agreed.

Later he took the headphones off and pulled my hand to his ear to hear the music that way.

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What just happened?

I have always had a suspicion that we were deeply in sync, with no words. Often Don would answer a question I was just thinking about to myself, and not out loud. Or I would suggest something that he had just been thinking about.

But couples living together, especially as intensively as we have, in the bush or working together 24/7, can expect to develop a closeness.

Yet this deeper communication was so elusive, not exactly cryptic but under the surface, that I have never been sure exactly what it was or if it was.

Take today. He was pretty dozy when I got there after lunch, but we chatted and talked a bit, neither of us understanding any words, just body language.

After a while he stood up and clearly  and pretend casually –  asked, “So how long will you be gone?” The question he always asked, in exactly that tone, when I went away.

My jaw dropped. By no means verbal or physical, had I told him I was going on a mini-holiday the next day.

“Oh” I said, recovering from the surprise and wondering if I was crazy to take a gamble on the truth but in a kind of magic zone, “3 or 4 days.” He nodded.

 

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Speedster!

He’s had 2 falls that I know of lately: one on the 12th which led to a skin tear on his elbow and one – more a tumble than a fall – today. In neither case was I informed, which is very disturbing.

In both cases he sustained only minor injury. Once he got up in the night and they found him down the hall, probably searching for a bathroom ( yes there’s one in his room but his sense of space is pretty well non-existent.)

As for the one today, I suspect sleepiness as a contributing factor since he is often needing a nap and not getting it. And this evening he showed signs of back pain and was barely walking, very crooked, although he was in a good humor.

In any event one of the caregivers brought out a wheelchair, and I said, They tell me he won’t use that.

“Huh? sure he will-  I use it often with him when he’s unsteady. You just have to jolly him along and stay with him” — which of course is a terrible problem with 2 caregivers and 17 patients most of whom would benefit from extended human contact beyond the physical necessities. The allotment, I have heard, is 15 minutes a day each.

In any event he sprawled on the couch with me for awhile, snored a bit and chatted a bit, and got lots of love talk and happily appreciated hugs and kisses. Then he decided we had to go and struggled up, with evident pain.

I pointed out the wheelchair and asked if he wanted to sit there. To my surprise, the answer  was “Sure,” and he did.

Then to my delight we tore up and down the halls, round and round, at breakneck speed, himself gripping the sides of the chair like the steering on an airplane, controlling where and when we went by paddling with his feet and only pausing in momentary confusion when I pointed out an alternative to a narrow passage. Even did a couple of wheelies which seemed quite intentional to me.

As we barrelled down the hall he was singing. I said, “Hey, slow down, you’re going pretty fast,” to which the response was a cheerful “Yep, at least 60!”

 

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Sweet sadness

When I came into the care home he was standing by the window, not enjoying the wind in the trees outside, just wavering back and forth, almost buckling at the knees.

It took awhile to get his attention but even then it  was vague. He knew me not. But I persisted and a full body hug got him focused (yep that’s my guy!) and then a tender mouth kiss. He went with me 12 feet and collapsed on the coach. Some kind of garbly conversation followed, then he leaned back, I put my arm around him,  and almost immediately he started to snore.

And we both rested, enjoying the sweet comfort of our familiar bodies, safe and together for an hour. Until my arm fell asleep and I gently slowly extracted myself, and tiptoed out.

When I returned later, needing just a little more contact, he was bright and smiling, welcoming me as someone he knew.

The rest gave us both sweet goodness.

For the first time in a week, emotionally satisfied, I did not choke back tears as I left, having handed over my smiling “shadow” to a caregiver.

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Into another dimension

These days it is pretty well essential to phone before you go to visit the care home.

He is sleeping a lot, sleeping in, and sleeping at any time. Last week, one day he slept for about 30 hours out of 36. Then he was up and active for a day or two, then next, lay abed until 2 PM.

Often he is just lying there, sleeping, then moving his hands and talking. He is almost never unhappy.

The last few days I have sat with him, when he was up but not really awake. He talks, he sings, his eyes are closed but he sees things he tries to catch or follow or describe. He asks if you have seen them. He asks incomprehensible questions, and nods sagely at my carefully neutral replies.

Sometimes I stroke his cheek and he starts to smile, to laugh and grin, then make funny faces because he always did that when he didn’t know what to say.

Other times he play-snarls and waits for me to respond. This is actually an old game we played decades ago – Don’t mess with the hound and his food!

Not too long ago we talked entirely in growls and yodels and assorted noises, and I think we both found satisfaction in the fun and the closeness.

I am sure that he is exhausted just existing, even in the super simplified – almost barren to tell the truth – atmosphere of the dementia ward. Everyone resident there is pushing themselves everyday to make sense of simple things, to eat, to find a place to sit, to understand the act of sitting.

I am pretty sure he sleeps, and then bounces back, because it takes all he’s got to survive.

And still he keeps trying to use his mind, once so strong, to create order of his visions. He is cast adrift but still paddling, still singing, Still searching incessantly for a harbour that makes sense.

The places and people of his life have almost entirely faded away, vanished in the mist, although sometimes he starts the old ritual of naming all his brothers and sisters and his children. For years we did this every morning, his insurance, but now that safety net which meant everything to him, his identity,  is gone.

Every action, every word, forgotten about 10 seconds later.

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