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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The Moaning

Time slips by and we stagger, sometimes literally, on. Don remains on his feet but is sleeping much more and both allowed and encouraged to do so.

Fatigue makes him wobbly. A few days ago I was there just as he woke from an afternoon  nap. He was sort of in shock, a bit desperate, shaking, and said, “I’ve got to get out of here.”

Then he started The Moaning. ‘Tis a dreadful fearsome thing. He gets into a kind of evolving moan which takes over his whole being. And nothing breaks through the rhythm into his consciousness.

Even in the face of its piteousness, I cannot help but recall the time at home when he was going on and on… and on.

No diversion worked. Finally I snapped, “Oh Stop that ridiculous moaning.”

In the sudden silence I bit my tongue.., too late, and waiting for the explosion.

“Oh!” he said, “Well, okay.”

And that was that. Silence.

I still laugh. Just one of thousands of delicious memories.

This time however we went out to the nurses station where it was quieter and I got a flannel sheet from the warmer where there is always comfort waiting.

I wrapped him and cuddled him and we sat together until he quieted, then cheered up and agreed he surely was ready for supper.

But what never seems to change, no matter how hard I try, is a secret hidden hope each time I go through those locked doors. Hope that is dashed each day when I see him, tall and skinny, often dressed most peculiarly, as he gets more and more frail and less able to understand this daily world.

“Who are you?” was his affectionate private joke to me for 25 years, but now he really doesn’t know. And the answer makes no sense.

This grief must surely bring some strength, some bonus, some tempering in the fire, but for now all that remains, all that is evident, are the many broken hearts who visit the dementia ward.

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A hard decision: help needed

So we have come to a point where my love is walking…meandering, staggering…  around with his eyes sometimes closed. His legs are buckled, he leans sideways or backwards and it is truly scary. It looks like he could fall any minute, and he could. Not all the time but a lot. And he sometimes does fall, and quite often nearly does. He usually won’t sit down for long.

The care home aides and nurses want….or suggest, that he needs to be strapped into a wheelchair. To prevent falls. They are as terrified as I am when  walking beside or behind him. He could hurt himself or them.

And he has fallen a few times …kind of sliding to the ground in confusion when his legs don’t work. No injuries yet. “I don’t know what is wrong with my leg” he says.

Neither does anyone. It is a guess but probably it is a possible bout of sciatica, part the pain meds, possibly the dementia closing down another segment of the mind, but mostly because he can no longer orient vertical, up and down. That was an early problem. Now he doesn’t know where is upright and can’t tell his legs what to do. The dementia is taking away even that.

So it is a safety issue. But I cannot see the advantage or the care in strapping him down like the worst kind of tortured prisoner and I am refusing to sign the paper.

It is illegal to restrain him without my ok.

And I am NOT ok with this.

Over the 2 and a half years we have been there I have seen this. The patient starts strapped down for safety but is taken out and up on their feet for a walk 20 minutes a day. At most. Soon of course they can’t walk at all and life becomes a Brody chair. Where they lie swearing and trying to get out,  while the care machine rolls on around them and staff gossip and go for breaks.

Then, unlike when they were mobile,  the patient-victims really ARE swiftly parked and ignored. Oh fed and cleaned and cooed at from time to time  but that’s about it. No interaction except with family. Even the recreation aides don’t have much to offer once they are parked.

I want to puke. This is not humane.

Many of the parked recognise that I am a friendly face and make some kind of happy contact. But like everyone, I walk on by, with other things to do.

Part of me thinks wildly that i could bring him home, transform our house… foam on the floors and clear out the furniture such as it is, and extra care aides. Let him wander and fall safely in his strange fragmented world. Bring him home.

But foam doesn’t clean well and it is not that simple. It is the 36 hour job.

We don’t have family willing or able to take shifts and we don’t have that much money to get a suitable house, transform it and hire help. That is for the 1%. For us, we are beyond lucky to have public care. Many don’t.

There is also my own slowly eroding remnant of a life to consider – although at moments like this it doesn’t count for much- and those who depend on my work. That must count too.

On the other hand my own mother was strapped in a chair because she kept trying to walk when she was totally paralysed on the left side, with resultant dementia. And there was no other choice. But she was not drugged and never parked. She had my father with her 24/7. I have no idea what kind of love and determination that took. After she died he regained a huge amount of mental capacity and resilience. He did see what was coming for my love and me and told me not to do as he had done.

Comments and advice are welcome,  here, on Facebook, or by personal email. I need some help with this.


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Well, he said, holding me as we looked out the window, “I don’t know what happened to us, but now we’re stuck here, aren’t we?”

“Yes.” I wonder why the few coherent words he utters have to be such painful ones. But we are partners and we share our thoughts when we can.

It’s been a rough few weeks, as Don developed pain down his leg, as well as the back. The nursing staff said the tylenol wasn’t touching the pain anymore, so he got switched to stronger pain meds, some of which did put him in a very good mood!

The leg pain seemed to be sciatica, but there is really no way of getting a diagnosis, since  even if one could get an MRI appointment, he would be terrified at the whole experience, and, in any event, treatment is also impossible given his precarious mind.

So he got a nerve pain medication which made him very sleepy (as in walking around with his eyes closed – rather dangerous for all) as he adjusted, but after a couple of weeks he seemed to emerge cheerful and pain-controlled.

He still is talking a mile a minute, with very rare moments of lucidity. He constantly sees things no one else does, and i think usually has very little comprehension of what is said to him. The words don’t make sense, but he responds to calm, love, and gentleness.

Occasionally, in the middle of the jumble, sentences and sense emerge, before he gets lost again in his broken mind. I think of it like the ruins of bombed cities we see on TV — a jumble of building stones, crumbled walls, and rebar, parts of structures, some bewildered and tattered survivors, all thrown together with just faint indications of what the original structure was.

I should add (now that my tears have dried – again) that I know for sure that he was so tired this afternoon because he had been dancing that morning — a care aide told me how much he reminded her of her dad, and her dad too loved to dance. I also know that another one of his favourite care aide friends came on duty while he snoozed, so he will forget all about anything else and just have a good time hanging out for the rest of the day.

I intend to do the same.


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Well, I did it. Two years, three months and 13 days after my love went into residential care, mostly because I couldn’t handle his needs anymore,  I filled out the government form.

It allows the feds to assess our incomes separately for the guaranteed income. I have been making enough more money lately that it could affect his GIS which would affect the monthly care bill.

Anyway after resisting for a long time I filled out the form: Statement of Involuntary Separation. It is different from a marriage separation and is a mechanism the govt has invented to recognize the growing reality for elders. In some provinces I suspect this could even save the remaining spouse from having to sell the house. Great blessing that in BC that at least is never what the system requires to pay those hefty care bills.

But facing the reality is easier for the govt than me. I think this was triggered by a talk with the doctor. He had come to assess Don’s pain which has been increasing over the last month. Probably sciatica but without tests who knows. A frank talk revealed that I did know –  no matter the cause – curative treatment was not an option. My poor wounded man could not tolerate it mentally. His remaining grasp on “reality” is fragile and only the consistency at the care home keeps him relatively even.

For example this morning when he got up he wouldn’t let the staff take care of him – wash and dress – So they just left him alone to re-arrange his room until his mood changed. Otherwise there would be problems.

And treatment would do no good, only push him deeper down the rabbit hole. (Hard to imagine but every step along this disease I have underestimated the mental destruction that was coming.) So pain control is the only option.

I never imagined that our lives would end like this. I always figured one of us would just get totally and finally pissed off and leave! Heaven knows we battled enough.

What I know is that the form sits on the table, waiting to be mailed on Monday.



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The mills of the gods

The mills of the gods grind woe, And they grind exceedingly slow (with apologies to Longfellow).

Today he was not well. In some pain and just…not there. So bad that I returned to check again later,  and he was indeed a little better.

But tonight all I can hear in my brain is his voice, “I trust you. I trust you to make the right decisions for us.”

He said this over and over in moments of clarity as the dementia gnawed his fine mind.

And I did the best I could, but – gods – the woe is unending and a slow dance. Into death. But  i will not leave him alone. My life lesson.

The guy I thought would be a 7 year fling! Going into 38 years … and counting. Grinding out the good times and the bad, but slow.


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