CaringCV

It has been two weeks today since our caregiver and I delivered Don to the care home, and fled, stunned and shocked. Doesn’t seem like long but changes are afoot.

When I ran in to visit today, carefully planned for no more than an hour, my love was committing complicated walking spirals in the hall with another woman 🙂

Later as I talked with a darling aide who gives great hugs, he wandered off and I saw him in discussion with the other men. Who knows what about. One of the aides said the men will put their heads together about how to fix something (that isn’t broken) and try this and that and then the group will dissolve off and away….

The staff remain concerned about how often he asks for me but the response is now, Your wife is at work, and that seems to satisfy. They don’t understand how much improvement there is, if he only asks a few times a day, instead of dozens of times an hour – even when I am sitting right next to him. The staff also asked about the things he sees running around and I explained they were dogs or children, which seemed to reassure the aides.

And me? I spent the evening hemming up spare pj’s and pants, because it seems about 9 of them have disappeared into the laundry or the labeling room or somewhere. Seems like a lot of accidents, and rather scary although I must admit I am so glad –and sad– this is not happening at home anymore. Hopefully those pants will re-emerge tomorrow, but I have a whole bag of the second set ready to go in the morning.

And me? Pretty hard to give up caregiver mode when it has been your whole life, albeit unwillingly, for years. So now, I am feeling calmer, dreading the future and afraid to allow my emotions to awake.

As one woman said at my caregivers group a few days ago, “I just feel numb.” She said it over and over.

A line in an AD interview rang true: “I liken it at times to being a victim of domestic terrorism.  You never know what’s going to set an Alzheimer’s patient off. You have to have an inner resource to keep yourself from getting to the precipice and wanting to jump.”  I was on the verge of a complete breakdown when the system finally swung into action.

It echoed what another friend said about the feeling after the patient is admitted to care, “It is like being a survivor in a war zone.”

And that is how it is. I am still, inside, cautiously waiting for the next dreadful barrage.

Oh yes PS – it appears that Don’s Veterans benefits might help with this expense because his care fee, although as low as possible at $1000 a month was going to squeeze our income beyond belief, especially since continence aids, clothes -all those extra pants – and everything else under the sun still has to be provided by me. Anyway, the fact that my sweet love went off to join the Korean War and save the world from communism might be our financial grace now.

So Don heard me mention Vets to the staff, and he asked,  excitedly, “The Navy is sending for me?”

Oh my sweet dear heart.

Yesterday was a busy day for work, preparing for changes and then shopping for more pj’s for Don. Seems he is a bit heavy on the laundry.

After a pleasant evening, as I turned to go to bed, I was overwhelmed. I started wailing, imagining Don lurching around the empty halls of the care home, looking for me in the middle of the night. The agony was unbelievable.

Eventually the wails subsided and I phoned the night nurse, who was pleasant and said Don was snoring peacefully. I thanked her and fell into a deep calm sleep.

But remembering that pain brings tears to my eyes again.

Went to have dinner with Don on Sunday night, and he was scarey bad. Could barely open his eyes or hold up his head. I checked and no extra drugs were causing this.

A few toileting accidents the last two days apparently,  but worse than that, mumbling, trying to drink his fingers, slumping dangerously and unable to keep his eyes open but there was my poor sweet – couldn’t talk or hold up his head but kissing the aide’s hand to thank her. Vital signs were checked and uti was ruled out yesterday by the staff, and the only option tonight was to get him into bed before he fell down. Making silly jokes when he was able to hold up his head momrntarily as two aides walked him, hunched over almost falling and oh so frail, to his room. Terrifying.

Terrifying fast decline. However the nurse said maybe he was just tired because he was up most of last night – oh stay away guilt – looking for me. (No. I will not spend my nights in the care home because he momentarily remembers me -NO)

I left, scared and relieved that people who knew what they were doing were taking care of him.

About 3 hours later I phoned,  and the nurse said he was snoring peacefully – what better evening can any of us elders hope for? And how wonderful to be able to phone and get that instant reassurance.

On reflection, I am not sure that skilled staff knows what to do with this decline – or else they are not telling me, because they sure know more about what is going on than I,  even as they continue to ask questions about what is normal for my dear heart.

New chapter indeed. There is a care conference scheduled for Feb 1, to check that he is getting best care.

Oh yes– as for me I had a lovely weekend being cared for myself by water women, Celtic fans and other loving friends. Learning slowly to take care of myself … not easy but absolutely mind-blowingly luxurious when it works.

This morning I awoke rational, clear headed  and even making lists! Sounds like a silly way to.measure well-being but I haven’t been able to think clearly enough to make a planning list for at least 6 months.

Then I remembered this sense of awakening well-being had occurred at the end of each week-long Respite (mmm maybe not the first one) during the winter but each time I had been re-immersed into the nightmare. And each month Don was worse and so was I.

A partnership in lockstep decline.

I am so sad about this dreadful story. I wish the millions more who will face this, many with far less support, public or personal, than I, can be spared this torment or at least have an easier passage. Death is the end for all life but dementia torments all who come in contact with it.

It may be too soon, but I also rejoice that the system pulled me out before I too went down in those dangerous currents.

And the next day, the nurse reported a restless night later on, and the afternoon he spent happily with his friend Debbie, our caregiver. She cares for me too. What a breath-takingly hard job.

Feeling rather blue about some work-related issues, I took myself and a few extra items of clothing off to the long term care residence. I know my sweetie couldn’t understand the problem but I thought I might at least enjoy the comfort of his familiar hug and endless confidence in me.

When I walked in, he was happily eating a muffin and drinking coffee with the whole gang in the rec room area. I called, Hi Don, and he looked confused for a moment, then his face cleared and he said, “Oh yes, you’re… you’re one of our people, aren’t you?”

“Yes,” I said, smiling, because what else was there to do?

“So how are things back east?” he continued, conversationally.

“Oh fine,” I said, “everybody’s fine.”

“Well it’s nice of you to come all the way from down home,” he beamed.

“Down home,” I echoed, tenderly.

Later, after we walked awhile, he started fidgeting, almost knowing who I was, and said, “C’mon babe, let’s go.”

And I signaled to the care aide for distraction, and fled.

It is the beginning of the fourth day since I bundled my best friend off to the Special Care (aka dementia) ward of a local residential care complex. I don’t think I could have done it without the help and companionship of Don’s caregiver. Words cannot describe my anguish, which comes and goes in waves.

My friends have been very kind and encouraging, showering me with virtual hugs and real invitations. Dinner, a long walk, phone calls. Reminders that I am only as alone as I want to be.

But the house remains silent and empty, except in my mind, when I forget and start to look for him, or hear him talking.

I cannot go to see Don yet. He needs time to settle in and I need time to settle down. By the accounts of those who have visited, the care is outstanding and skilled. For example, the mirror in his room was covered immediately, but Don reported that “that guy” had followed him to the Village, so the staff covered over the mirror in the public area too.

And he has met some navy guys who were in Korea too. And there is music. In fact we are going to bring his guitar.

As for me, it feels somewhat like living in shock after extreme violence, and emotionally that must have been what it was like. Being a prisoner to someone else’s disease, watching and censoring  every reaction, every word, all the time.

Anyway, that phase is over now. Other people are taking over…many people to do what I did most of the time alone. Don’t get me wrong — the caregivers, the small breaks, the family visits,  the overnights, the respite weeks, all kept me going, but in the end most of the time we were alone and dementia was in control.

I have been pulled back from some awful brink. It is a gift of time and renewed life and it is now up to me to make what I want of the rest of my life. Who knows? I don’t, but I do know the first practice needed, the first step to recovery, is what my friend calls “extreme self-care.”

In my brighter moments, I am looking forward to it.

Went over to the Comox Valley Seniors Village henceforth known as CVSV, where the message said there was a room for Don.

Had the grinding familar tour that every commercial place does and I am gut wrenching familiar with them from my mom and dad  – and no matter whether the the place was good or bad- it did not feel open and welcoming to me. Nonetheless I have to admit the people seemed mostly to be smiling, which is quite an achievement on a dementia ward.

So…this is the only option now. Wait longer and wind up in another place the same, but further away.

I said yes, went out to the car and bawled, got a hug from my friends at the post office, and somehow got home, face red and puffy, eyes leaking memories all the way.

There were cheerful and supportive messages from my friends but more important, from that small circle of sisters n my caregivers group. They said it wasn’t all that bad…

I trust these sisters who know more about the guts of me, the ins and outs, than anyone else.

Later I understood that my reaction, certainly the depth of it, was one more indicator that I was burned right out, no resilience, no moderation only flight or fight, no sense of balancing reality.

My darling deserves better, and if it doesn’t work for him, I can’t pretend it works for me.

Suddenly, the phone message. The call came during a long morning meeting with the Seniors’ Health nurse, but ironically I left it to the machine.

“We have a room for Don.  Call me immediately. You have 24 hours to respond.”

Shock. Fear. Grief. Guilt. So much grief, especially as he murmured over and over, not knowing the situation, “I love you, babe. You will do what is best.”

As our caregiver friend and I sat drinking tea, she as stunned as I, and semi-out of a job to boot, it seemed to us, from Don’s disjointed comments, that he knew.”I don’t mind,” he said. “It is a good place except for the screaming.”

We just looked at each other. There had been a patient at the Lodge who screamed when she was being tended to.

But now, he is being assigned to a new different place, by all accounts good, and a special care ward, and here in the valley locally, after all.

Now what? What do I tell him? How do I stop my heart from breaking over and over again?

How could it come to this?

And then, as if to remind me that this was the only option to save myself, we went through a good 3 hours of discussion about whether it was OK to stay in this place tonight, whether there was enough money, where the car was, and whether we should just take off and sleep in the car. Despite my grief, I was again just about ready to blow a gasket, except of course that would do nothing except make a bad situation worse. I think perhaps people under-estimate how much discipline it takes to answer the same question 30 or 40 times a night, night after night.

Sufficient unto the day is the evil thereof. Tomorrow will come.

Ooookaaay.
This is the third attempt to write this post, due to the usual techno learning curve, so I am going to skip all the nostalgic bitter-sweet poetry about what a tender renewal every New Year’s kiss used to be for us. I wrote it twice and that is enough. It is in my head and heart.

SO I will just skip to this year’s New Year Day which will surely be one I remember, I don’t know in what way.
This year I forwent (think that works with forgo?) the loving kiss of renewal we have shared for decades – last year I sneaked over and kissed him as he slept beside me – but this year there was no point even mentioning the solstice season. All that conceptional framework has vanished. And I had no loving pledge to give.

This New Year day is surely another one to remember, but I am leery of what feelings will rise in the future.

In the last week after several conversations I have learned:

• that there are hundreds and hundreds of elders waiting for placement in long term care in this Comox Valley. (Pop 65,000). The social cost, judging from my own life, is hideous, but as one health care worker said, the system is in shambles and it is people like you who just go on until you give out who hide how bad it really is.
• that there is a committee of some sort in Victoria allocating beds on the basis of urgency- criteria unknown but with a rule of thumb of 3 from hospital one from the community. These “beds” are divided up on a regional basis.
• that “solitary caregiver” burnout is 99% inevitable and that I have held out for longer than most folks have to. I think by solitary caregiver they mean, when there is no one else 21 out of 24 hours a day.
• that the crisis people and the case manager understand that respite breaks do not relieve the unrelenting pressure of the demands of care and the assault on one’s sanity.

Because of that, and because the holidays, with the added bonus of press time, have driven me babbling screaming crazy – ( and because those of Don’s children who are involved agree) I have decided to widen the search scope for a placement outside of our local area.

But there are some hard questions to ask in the coming days about why the north island is so poorly served.

A whispering in the night, somewhat disturbed. I lean over and stroke his cheek and say “It is all right” and he subsides.

A hand holds mine and he whispers “love you.”

Later whispering passionately, “I don’t want to leave you.”

I roll to him and say quite emphatically, it being 4 in the mornng, “So Don’t!”

“Oh!” he says, relieved. And we fall asleep holding hands.

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All that sweet and true psychic state is one level of existence, but life works on many levels, and so does truth as we humans experience it.

I had spent the two days before he returned from the Lodge – where as before he fit in,  made friends, did the activities, was his sweet self with the other patients – I had spent those days in fear and tears, dreading his return.

Having survived that inevitable doom, I spent the next week digging into the placement system to see how bad my fate was. I was pretty serious about a drop off at emergency and a quick flight out to wherever , if my sentence looked to be more than a couple of months. That was the optimist in me trying to imagine a better future.

Anyway, tonight it seems I am making some progress on deciphering the care system. It is going to take more research to sort it out and I will post when I actually have some information.

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Quote of the week:

Me – to the “more information” person about residential care – “I just am trying to figure out how many people are on the list for placement.”

She: “There’s no list….”

I will spare you the ensueing round and round the mulberry bush, but it ended with me saying …Oh you are telling me there is no bed shortage and all those folks on the Second Floor (St Joseph’s Transition ward), there are beds for all those folks right now?

She hung up on me, but what could she do — we had just boldly ventured beyond her talking points.

Duh!!!! Of course there’s no list. If there was a list we the public would be able to see how bad this health care crisis is.

After an overall easy day, with little going on. The caregiver, right on the ball, actually coaxed Don out for ice cream. Things got a bit touchy for awhile after they came back but settled down with some lame but successful diversion.

We heard him say “Hi” quite happily to the guy in the mirror.

I knew we were fine when, as I started to dish out dinner, Don suggested haltingly that it would be nice if we filled a plate for that fella in there (nodding at the bathroom).

Oh, I said, thinking fast, I think if he wants supper he should come and sit at the table with the rest of us.

But the harmony was not to last. As I was writing this post, I had to stop, due to the familiar but increasingly urgent refrains of Let’s go, I want to go home, Where’s the car, etc.

By the time we got to bed, Don was literally jumping up and down in and out of bed, saying, I have to go, I have to go talk with Delores. I tried everything, but it took three hours and several pills to settle him down.

I haven’t seen that level of delusion and aggressiveness in a few months. Sigh.