Author Archives: delores663

Don at his new care home

I know many of you lovely friends and readers wonder how things are going since, about 3 weeks ago, we, Don and me, moved to a new care home, one which has shown an interest in dementia care.

Moving a dementia victim is so very iffy, and leaving longtime dear friends behind is heart-breaking, but it does appear he is thriving!

Of course I have no real idea, except staff reports, what is actually happening in his life because i am locked out due to Covid. And I am afraid to get too comfy too soon.

BUT there are indicators. Apparently he rarely fights “care” and once apologised because, he said, “I’m sorry, I panicked.” Wow. Just wow.

By staff reports, he has only had one “bed day” in 2 weeks.???? That was yesterday, and i never expected him to be up today for our visit. 

But Yes, the person who answered the phone said, about an hour before that precious 30 minute visit: I saw him dancing with a care aide not long ago.

When i got to the visiting room, he was sitting very comfortably in a new “tilt” wheelchair, ordered for him.

He had a lot to say…

So I asked him, Do you like this place? and he said Oh yes. But once out of 4 over the 4 visits we have had, he said No, and by now he does not know it is a new place or what i was asking.

“I love you,” he said, and over the course of the 30 minutes, amid a whole whack of incomprensible stuff, he had somehow figured out that this was a good place and, authoritatively,  “I will sleep on that side.” On the side of me that he always slept on.

 ummmm just ummm okaaay,  my dearest heart. 

I stroked his cheek, and he snarled like the hound,  a long-standing character from his boyhood in our relationship.  I drew back, and he smiled and said, “I was just funning.” 

Very alert and active. He jerked his lovely new chair, with the brakes on, but no belt because i cannot bear him confined and his spirit broken, away from the table, determined to stand up and explore! 

Fortunately, it was hard to get his legs, the foot rests, and the table legs all disentangled, and i kept encouraging him to sit back. Had to push hard and stroke and cuddle a few times before he sat back, for 2 or 3 minutes before he was struggling to get up again. 

It was against The Rules for either of us to stand up and walk. 

Of course i would much rather walk around with him holding hands and hugging as we used to do, pre-covid. Or even in the other place where, as I was an essential visitor, we were allowed to walk around in a special room. 

But that is against the rules. Words fail, and i will say nothing, because these precious minutes are what we have. 

I think it is on Dr. Henry to figure out that these “health measures” are putting thousands and thousands of seniors through torture. 

But that is a bigger and different issue.

Here and now,  I will put on the record that he has seen, and I have talked to, more specialists, PT, OT, dietitian in the last 3 weeks than in the past 4.5 years.

And if the smoke clears we can go outside for a walk in 2 days, for the next 30 minute visit. 

 

 

 

 

 

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Sadly

The long awaited visit was a bit of a wash.

Almost a week after i moved my so-sick darling to a different care home, and after glowing accounts of how well he was doing, well, the social visit today was … not good.

He had, according to the phone reports, been up on his own for 4 days! extraordinary,  and usually that means he needs to sleep for many many hours, because it is exhausting for him. I would not have been surprised if he slept all day and night. I would have been very disappointed to not see him, but not surprised.

But the rec people said they saw him at lunch so he was up.

After some wait,  a very unemotive efficient young guy delivered him to the visiting room. He was in a wheelchair, as all the visited were, legs sticking out and diaper (i copped a feel) kind of weird.

Mostly asleep,  head hanging out of the back of the wheelchair badly, and then raving, …. gently…,  out of it. Even for him who is to be honest, actually always out of it. There are degrees of out of it.

At one point threw back his head and sang, gloriously. Had a lot to say, between naps, but so disoriented.

Without being able to hold and hug him, caress him, i could not reassure him and slowly ground him.

Not to judge this place, because i have not been able to do this crucial body language mostly for months now, due to the Covid imprisonment of elders.

We always knew care homes had big problems, but who ever imagined society would happily make them into prisons, pretending it was for the elders’ good.

He knows me, or knew me 2 weeks ago, with body language and a full body hug. And then he had that glorious smile.

Not allowed in this new situation. Not allowed to stand up and walk around, and then when it is right, hug properly.

That is how we communicate in his particular dementia, walk around a bit until he centres (well, as he can), hold hands, and then hug, touch, love for few minute or two, until it all passes out of his memory again. Or does it?

And the, even more worrying, 3 messages on the ward answering machine, unanswered. Very frightening.

I think he likes this new place, answered Yes! loudly when i asked, but whether he understood is a conundrum.

Tonight, fearful, i wonder, What kind of mistake did i make? Or did i? Is there any good place for dementia?

 

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Not Easy

Saying goodbye is hard. The staff where Don has lived for 4 and a half years have literally formed my Village.

Tonight i am grieving saying goodbye to some dedicated caregivers, and really decent human beings. We all know why it was time for us to “hit the road,” but the next bend is scary, of course.

And i will miss the sweet thoughtful kindness of those who looked after Don, and so many times held me as i wept uncontrollably.

The die is cast now, but it is a small beautiful Valley. My friends, be well, until we meet again, and I am sure we will.

Ciao.

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Hitting the Road

In 3 days, we, that is my love and therefore me, will move to a different long term home in the comox valley. It is very scary, and in many ways a great loss.

We have been at CVSV for 4 years and 5 and a half months. A very very long time.

We both have formed deep friendships with staff there and moving is scary and wrenching. Leaving home, leaving this village.

Losing those great caring caregivers could be the biggest mistake, among so many, i have made in this journey with Don. It is certainly painful to say, See you later. In my heart i deeply hope it is, See you later.

And we will see, or don will, i won’t yet due to Covid, the many talented caregivers we once knew and who moved. To a dementia-focussed non-profit home.

I know things go sideways in every care setting, so I am not expecting miracles.

I don’t know what to expect, except i think my live will thrive for awhile yet. And i remember how joyous he was in hospital last year. His spirit is strong.

But my gut and heart says, Now, and the opportunity is here.

I told Don in our last 30 minute meeting that we were going to move on. He seemed to have no comprehension – how could he?

But 15 minutes later he said, Is it time to hit the road, babe?

Who knows what gets slowly processed in these brains devastated by dementia?

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Learned

It is 3.35.

He comes slowly down the corridor, staggering a bit, hand held by the care aide, not distressed but not walking well, very distracted by all these new strange sights.

He is 5 minutes late for our 30 minute meeting twice a week. I am dancing on pins, wondering if i should bother the very kind folks at the front desk to phone back into the forbidden zone and ask? But there he is.

I come out to greet him and the care aide, facilitating, says, Oh look, here she is.

He says they left at 3.20. It takes a long while, and skill, to bring a severely handicapped guy through all these strange vistas he has never seen before, without triggering extreme fear.

As we go in to the visiting room, he has no idea who i am but i sound friendly and he takes my hand in his very very cold one.

We do stuff, and slowly his hands warm up. He happily sits (this sounds simple but involves a lot of suggestion, patting the seat, and him kind of roving around, finally asking, Sit here?) He looks and looks around the room we have been in many times before. More and more warily.

Now, my true love scared is a sight to beware —  even now i myself am slightly apprehensive — so I hand him the pool table wooden triangle hoping for a distraction, and he askes, To eat?

I say, er,

No, and try to interest him in making noises with it. No go.

He gives it back, not interested (that’s my guy!) and struggles up. We wander the room holding hands (yes same old room we have been in before, but each time new to someone with no working memory).

After awhile, out of nowhere, he stops and stammers, “i really really l-l-l-l lea-rned you” and bends down, holding me, quickly to kiss my mouth through the mask. Astonished, I turn my head and he kisses my cheek. For those 30 seconds he was intent, and then it was all gone again.

Disappeared into the dementia fog.

But for a couple of seconds, there was a beautiful happy smile in his eyes.

And so in my heart for the days until we are allowed to meet again.

 

 

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Passing strange

Lovely 30 minutes today. He was awake and in a good mood and talkative. The care aide who shepherds him said he had been up since 10 am! She knew he was ready to sleep for a few hours but was afraid he would miss our date.

Ironic but so dementia typical.  I had scheduled the date for later afternoon because he has usually been in bed until 2 pm.

Just gotta roll with whatever.

So we walked around, he kinda glommed on to a fake potted plant and i had trouble moving him away… maybe some slight disarrangement of the decor there.  Gotta roll….

We played with the shuffleboard for 2 minutes, his eyes widening at the clack when he hit a token.

Then on around and around the room again.

He selected a stacked up chair, not the ones set out and sanitised for us, of course, to sit down. I tried but could not steer him to those on this day. And he promptly, happily, started to dose off.

So i got him up again. I would be happy just watching him sleep, but it could be difficult to get him back to the ward. I even thought of calling the care aide to say, bring a porter chair in case he conked out. Even then it could be a problem. He can be a dead weight and too much for us.

After another round and round, each time a new exploration, it became clear he needed to sit again.

I tried the internet looking for music, and this week the connection to Shaw Open worked. Yay! And soon we sat and moved our hands to the music, all the while his eyes were closed. But he was not asleep, just resting. I tested by leaving my hand still, and over and over he picked it up himself to the beat. And he answered when i called his name.

It reminds me of how much he always wanted to share music, and how sometimes I was not gracious.

Oh no no no! not Kris Kristerstoffison for the 9th time straight! because he didn’t remember the other 8 times and i already, 8 or 9 or more years ago, did not realise the depth of the memory loss. I am sorry to say we – well i –  argued. He just thought “crazy woman” and mostly reluctantly humoured me.  The ipod I got as a compromise was not really sufficient for him, because music is for sharing.

So today we shared this Creedance Clearwater music with our hands. Once upon a time we would both be up and going crazy with joyous dancing, but that was not this time and maybe….. he doesn’t dance the way he did just a few months ago? A few months – going on 5 months – is a very long time as this disease progresses.

Before Covid we danced.

Slowly getting the beat and doing fancy moves with his feet, showing off, and being so happy when i twirled away and came back. Not for a long time have i seen that. No dancing now.

I don’t know how much he dances now, or why or why not, or if there is even dancing music ever in the ward  – no live music that i know, no happy Friday parties i know, under Covid. And under Covid,  i cannot visit his daily life. I am not allowed to know what is really happening with him.

When the aide came to take him back to the ward,  we chatted and he at first objected.

Since he got sick he always hated people, especially women, especially me, talking when he could not understand. So we slowed and lowered our voices and our pitch, and soon he was joining in. In what sounded kind of like complete sentences. Not too sure just what he was saying in particular but he was very satisfied to be a part of the conversation, and listened to.

When we got him standing up, and as he walked out of the visiting room, with the aide holding one hand,  me the other, he started singing. As i slipped away,  he sang down the hall away from me.

 

 

 

 

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Careless

Tonight a light story from …oh 8 or  10 or 12 years ago… one that still makes me laugh.

We had a plot at the co-operative  Anderton Gardens near Comox  – a magical space i highly recommend – although for some reason my love buddy never took to it wholeheartedly.

One day we went to watch the extraction of honey by the bee keeper there. I thought that might interest my bear and it did. We bought a jar or two that i gave him to hold.

Then, wanting to go see our plot which was probably 500 feet away, and knowing that getting don up and moving in the right direction would be a major chore, I asked *S* who happened to be there, to keep  an eye on him. She was leading the dementia caregiver support group i went to at the time, and i knew she knew what to do.

I slipped away for 10 minutes stolen peace with the plants.

Next thing i knew he was hobbling, furious, up the path, clutching his honey and his walking stick. S trailed behind, somewhat apologetically because she knew how precious those moments were, but guiding him.

At that time we had no home support, no respite, it was all on me 24/7 …

“You are too careless with me!” he shouted and accused, very indignantly. “I didn’t know where you were!”

I tried to pour water on the fire. Oh Yeah.

“But I knew where you were, with S and she is our friend who would always look after you.”

The embers glowed for hours after we made a hasty retreat to our apartment. I felt bad for S but there was no time for conversation. Getting him out of there was the best option to avoid the full volcanic eruption.

Looking back, still chuckling, because he was so very indignant and it was so funny,  i understand now finally that he was already much more impaired than i realised.

I needed time and space to not feel personally more imprisoned before i could hear. He wasn’t being selfish or stupid or possessive. He just didn’t know where we were and he was terrified.

The story of the dementia caregiver: Your person has already gone 3 or 4 more steps ahead of your comprehension into that long travail. And when you get a chance to look back, after time passes and maybe you get to catch your breath, you see.

“You are too careless with me!”

I didn’t know how bad it already was for him, because i held him steady in our daily life and did not understand how much i was doing. I did call myself his guide dog, but did not understand the depth.

In that angonished bad moment 10 or some years ago, he told me. I did not know how to hear.

Later, in one of the many care workshops, i wrote a message to myself for the future: “Listen to Don, he will tell you what’s going on.”

Eventually i could do it no more, and he was placed into care which is another whole exhausting story. But better than him shadowing me, albeit happily, all around the house.

Oh i had limits! i made him sit on the bed watching the bathroom door until i came out. Which reminds me of all the times he burst in while i showered, “Are you alright? i didn’t know where you were.”

Listening is harder now because of the Covid lockdown. And because he is much more away from me as the disease progresses and i have not been able to follow day by day.

(Talk about an epidemic by the way. Dementia qualifies.)

It might be a mixed blessing because i know the end of this long and twisted tale is inevitable. It might be good for my health to have more enforced distance.

But of course, i worry. If he had enough mind left to think about it what would he have to say?

The other words that echo and sting are ones from about 3 years ago in a rare moment of clarity.

“Oh i don’t mind staying here, it’s ok, so long (stern emphatic look) as you visit every day.”

And now covid cases rise again and i think, Oh my love, we have all been too careless with you.

 

 

 

 

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Sob sister

i can’t begin to imagine the life (or to apologize for my own hyperventilating) watching cbc national on the opening of a tiny bit of day care for parents and their kids who are disabled and need 24 hour care from parents who have had no respite —  for either parents or kids – during Covid so far.

And i am also thinking of ALL those thousands and thousands of caregivers, of loved ones with dementia and all the other needs, who have dealt for the last 4 months without home care, without day care, without a break. Unbelievably hard.

I want to eat, walk back, all my bitching and complaining because my pain, much as it did hurt and does hurt, is a silly blip in the wind to those in the daily struggle to stay sane and care. I know, because i was also there for years.

I am awestruck by those parents especially who have chosen to give up.all their life to their child … forever.

But also all those home caregivers who have been cast aside by the Covid winds. You have a harder row to hoe than we can imagine.

All Respect.

And please get in touch if there is something i can do to help. Yes I am a wounded one, but nothing heals more than helping.

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I’m Ok but this lockdown is not

I am sorry I caused extra concern with my post from yesterday.

To be clear, I am just fine, and (almost) over my Mad. Might take a day or two more.

I am going to (hopefully) get another visit next week and we will go from there.

I am still convinced that these visiting regulations and the entire extraordinary lockdown of the care homes (to all but the couple of hundred staff who come and go every day) is as close to medieval barbarism as you can get, and as illogical as the witch trials. But that’s a tale for another day.

And hopefully some lawyers, lots of lawyers! because this cannot be allowed to continue indefinitely: https://www.jccf.ca/family-members-to-launch-lawsuit-against-ford-government-for-violating-seniors-charter-rights/

See also the letter to Nanaimo Seniors Village  https://www.jccf.ca/legal-warnings-issued-to-long-term-care-homes-who-continue-to-isolate-seniors/

 

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Serious fail

Just saying, not being melodramatic, just factual.  If suicide was available, i would consider it. Start planning options. My preferences, like no drowning, no hanging, do limit the field and that is probably good. Maybe. I guess. 

My close friends and my doctor know i have struggled with this for years and especially since Don got very ill.

In bad times like tonight, one thing holds me back. I promised myself i would stay while my dad and my love were here – in this particular time/space – because i knew it would hurt them too much.

My dad is long gone, and relatively peacefully. He was ready to go and advanced cancer and a whack of sedatives set him free. My long-serving caregiving sister is beginning to reclaim her life and i rejoice for her.

I have been so often tempted to cheat and i say to myself, well your love knows you no more, you are free.

Strangely,  I am almost eager to see what i will do and feel when i am actually free of those moral bonds. The real test. Will I decide to leave, no regrets? Or, an enormous weight of trama resolved, will I live the last few years of my life with the joy i feel just outside the reach of my soul?

I am so curious to find out. The inner me has been so stripped by my love’s dementia, anything could emerge.

But so much for if and when.

He sometimes, given time and space, does know my being, of course not my name and not who-in-the-world i am, — no relational structures, human or spacial,  of any kind, mean anything now –  but once in awhile, after time to sort things out, he smiles in his eyes, and holds my hand and sometimes hugs or kisses me, when possible.

Which brings me to today’s epic fail. A faulure of system communication, a failure of compassion (well that would be the health system’s management of long term care in bc altogether) , a cascade of issues including a failure of the unit LPNs or care aides to answer for 2 hours my repeated fail-safe phone call to alert my pending visit.

(All cool nothing to see here All reformed and good to go. Oh yeah,  except the day shift staff have been unable to answer the phone, for hours, for days and days. Short staffed or just ignoring family calls?)

All this, AND he is delivered 15 minutes late on a 30 minute once a week date,  the 4th precious 30 minutes in 10 weeks. It takes my love 15 minutes to recover from the journey from his safe ward to strangeness.

All this leads to emotional catastrophe for me, and maybe a bad day for an inexperienced rec aide who was just filling in.

My love will remember nothing, not even the part where, after  sitting at the table, and calming down from that long journey through various locked doors, and us playing games with a stuffed toy he pushed toward me, me carefully not touching it because of the rules,  after 10 minutes, he slowly shakily  reached out for my hand and i stretched a tiny finger to him…

He will not remember. I will always wish i had died before i was forced to pull that finger back. “Ma’am that’s against the rules, Ma’am you will have to leave. Take it up with Bonnie Henry.”

Care? Compassion?

All I can think tonight is how i failed to protect him.

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