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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Ruined

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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Separation

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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Some days are diamonds

What a lovely day today. I had lunch with a dear sweet friend who always makes me feel comfort and a calm joy.

Then toddled over to the care home where we met with Don’s son and his wife. Things were a bit uncertain at first, Don in a bit of a vague mood. He would have been perfectly happy to sit on a bench in the ward and snooze holding my hand.

But then magic started to happen. A musical group including a caregiver friend of mine set up in the lobby and we had an hour of singalong. And of course, Himself started dancing, to the encouragement of the band. He danced and got me up and dancing — I no longer care what it looks like, I only seek that happy smile on his face when we lift our arms up together, or when he murmers, “You are so beautiful today.”

Our family had a good time, the audience enjoyed the music, and I think the musicians did too.

At the end, more magic. Don turned and looked at his son,  and said “Wait, is that… ? …Well I’ll be damned!” Breaking into a huge grin with a big hug of joy and happiness to see him.

Shortly after, the realisation was lost again, but once more regained – another moment of joy – before we said goodbye.

A clear demonstration of the power of music and dancing to re-activate the ailing brain.

And to give us a happy day.

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What is it?

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.

 

 

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The Village mourns

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.”

 

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