Tag Archives: palliative care

Blake No More

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Blake 2 days before he fell off his perch

Sunset and evening star
And one clear call for me
Let there be no moaning off the bar
When I set out to sea.

Tennyson

Blake’s last day was devoted to breathing. Three, sometimes four, of us sat beside his bed listening to his breath. We told Blake stories. We laughed quietly. How amazingly, infuriatingly complicated this man had been. How persistent he was even now in spite of agonizing pain that fentanyl and morphine could not entirely subdue, in spite of his failing mind and his inability to communicate.

The nurses came often to keep him comfortable. The doctor came to talk to us. The Salvation Army Chaplain stood quietly with us. We took turns going out to eat. We told more stories.

Blake’s breathing changed. There were long pauses when we thought the worst – or the best depending on your point of view. As the light began to fade over Bloor and Church, there was one last breath. We waited. We nodded to each other. We put comforting hands on his body. We wept silently. After a while one of us went for the nurse.

6:45, Monday, March 19, 2019

There was a glorious red sunset as I rode westward home.

Other posts about Blake and his relentless efforts not to fall off his perch are available at 115journals.com

 

Blake on his Sad Height #2

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And you, my father, there on your sad height
Curse, bless me now with your fierce tears, I pray
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Dylan Thomas

Here I continue the story of my ex-husband Blake’s fall off his perch. See 115journals.com for previous episodes.

Alice just called. Should Blake have blood thinner shots?

I am known as the Alice whisperer now. Like Blake, I am old enough to be her grand parent, so what the hey. The younger members of the family are more familiar with being the target of Alice’s angry shouts to get out of her house and leave Blake alone. That would actually be Blake’s house of course. But that chapter’s over and done with.

After Alice broke Blake out of Toronto Western Hospital, things went downhill on the home nursing front. Mercifully, I was left out of the loop at 1 a.m. when, once again medics trundled Blake down the narrow stairs from his third floor bedroom, and took him to Mount Sinai Hospital.

Alice just called again now. The doctor says Blake’s hemoglobin is so low, blood thinner may cause a bleed. So no.

Yet another day of sitting beside his bed and talking to the palliative care resident, the palliative care doctor, the nurse, the pharmacist, the social worker, the resident internist, not to mention the diaper changing crew and the meal shleppers. Hard enough to answer questions without Alice asking complicated meds questions of the social worker or hospice questions of the pharmacist. Always Blake was consulted on decisions. Did he want to continue treatment with Zolodex. No, he didn’t. Two interviews later, by a different expert, well, yes, why not. He’d been taking it all along after all.

Daniel and I are silently shrieking, “Stop. Stop. It’s over.” Alice is buying even the smallest unit of survival time.

The Zytiga costs $4,600 a month, but all Blake has to pay is $600 for one last bottle before the drug insurance runs out. I have no luck contradicting that decision. Alice has POA. (Yes, I had to look it up – power of attorney.) She gets to make decisions.

Alice takes it hard when the resident explains that a hospice makes the patient comfortable, but does not treat the underlying disease. By the end of the day, news arrives that Blake will be moved to the hospice unit of Sally Ann’s Toronto Grace in the morning. He is there now and that is where Alice has been calling from.

It took me the usual 2 hours to get back out of the city. I was so shattered, I took a short cut which turned into a long, long cut. At home, I showered, brushed teeth, gargled and made plans to burn my clothes. Then I fell into the unconsciousness of sleep at 6 p.m. Spending a day trying to keep Alice from messing things up and countering her rude cracks at the staff has that effect.

But Blake!

He is completely changed. He doesn’t care who helps him sort out Mr. Peepee and the handheld urinal. I say, “Good boy” and he’s satisfied. He snoozes and wakes up to ask questions. “David’s Savings Time?” “Air bubble?” Some I can’t decipher. “I need to borrow a lot of money,” he announces. “Why?” “To solve this problem.” We skip the obvious. The problem will be solved soon enough. “You just got your pension cheques,” I say. “I’ve paid your property tax,” says Alice, “and you still have $80,000 free in your line of credit.” But he has actually read the family’s mind. We thought we would need to pay for private hospice care. “I can hear phones ringing and somebody saying, ‘I’ll transfer your call’.” The nursing station is far enough away that I certainly can’t. I feel sorry for the young man in the next bed who is recovering from orthopedic surgery. How hard this must be to overhear.

Blake is listening when the best news of the day comes. His prognosis is down from 6 months to 3, and that is why he got a hospice bed.

I rub his feet. I touch his forehead. I do not allow myself to grieve. I can do that once I get out onto the Queen E. where the freeway traffic thins and all the way up Erin Mills.

Once I got rested, I felt how sacred it was. He looks like one of those elongated saints beside a Gothic Cathedral door. He has lost all his angry edge that made the last six weeks so hard. There is nothing left of the womanizing misogynist that wrecked lives. The essential Blake is there, just shining through.

 

Comedy is Easy. Dying is Hard.

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We were bird people as a family. Too many allergies for furry creatures. There were usually two budgies in a large cage, with names like Pip and Midjbill. And God help the unlucky child who pulled off the cover to find that one of these beauties had fallen off its perch.

As constant readers know, my ex-husband Blake is about to fall off his perch. https://115journals.com/2019/01/26/go-gentle-or-rage-two-ways-of-saying-g

https://115journals.com/2019/02/08/place-your-phone-in-your-shoe-and-move-forward/

https://115journals.com/2019/02/23/blake-there-on-his-sad-height/

He has had an ample allotment of borrowed time. He was diagnosed with stage 4 cancer nearly nine years ago, at the same time as his much younger second wife, and has outlived her by eight. Now that time is running out.

I know about living on borrowed time. I am mostly grateful to have had so much of it myself. Mostly, I am grateful, but possibly, like him, I will not consider it ample when the time comes.

Meanwhile, I have a bit part in Blake’s last great adventure. The experience veers between tragedy and farce. There are heart-rending moments, followed by down-the-rabbit-hole moments, involving, for example, shoe phones.

Stories of families gathering before or in the wake of a patriarch’s death have a common theme. Revelation. Family #1 meets family #2 and all is revealed.

We did that on such a brutal winter night that we were the only people in Milestone’s dining room. All three children were beautiful and bright, mine considerably older than the step-daughter and daughter-in-law. Once they got going, trading stories, I had to put my hand up to get a word in. Blake had changed settings, but not much else. “He did that to you too?” was a common refrain.

Since we were all now having to beg permission from his latest live-in lady to visit him we had started out a little testy. Since we had also spent a week trying to clean up the squalor of their home, we were seriously aggrieved. We didn’t want him to spend his last days like that. On the other hand, we didn’t like being screamed at to leave now, nor to contend with Blake’s desperate cries that we didn’t understand.

At least, I concluded from the family revelations that Blake had risked his step-daughter’s life less often than ours as he sailed Sirocco, the red hulled Northern 39. And anyway, we were willing participants in those cross-lake races through 20-ft waves. Or willing to risk our lives for Blake’s approval at any rate.

For a week, a kind of peace descended as Blake’s grandsons sat with him in his third floor sort of clean room.

Then they were gone. Our son Daniel and I found ourselves beside Blake’s hospital bed with his companion Alice, trying to understand proposed treatment and to inject logic into choices. Pretty much to no avail. Blake intended to go back up to his third floor. It would not be possible to equip it with a hospital bed because of the same narrow stairs that had prevented the paramedics from stretchering him down. He had had to walk down with 10/10 pain. But once his hydro-morphone dose was right, he would go back there and if he chose to, he would drive his car. This last decision led to hard feelings. Daniel and I did not agree that persons on opiates with a weakened back bone should drive.

As a result, Blake and Alice slipped out of the hospital last Saturday and ubered home. (Sans driver’s license, which the doctor had had withdrawn.) She watched him climb back up to his eerie. She reckoned he could have a few more weeks there in the company of his cats, warming his creamed soup up in his microwave and snacking on smoothies from his little fridge.

Until. Until the pain got up to 10 again on Sunday and what should she do. And he wouldn’t get off his wet bed so she could change the sheets. And he was cursing the doctors for not getting the pain meds right.

And I was saying, “Call 911!”

I was trying to shop for groceries. It was the second time in 10 days that I had tried to buy groceries while Alice shouted in my ear buds that she couldn’t handle things.

For the next 2 hours, I fielded phone calls -Alice, Daniel, Julia, our California daughter, Georgia, my sister – all of them several times, each call interrupting another. Texts dinging in as we talked. Daniel was about to go over to Blake’s home and call 911 himself when the palliative care nurse arrived at the house. The last I heard, Blake was allowed 2 more short term hydro-morphone when necessary. He hadn’t taken them. He was sitting up, his pain was 0, and the bed was only a little damp under the clean sheets.

The comic who says, “Dying is easy. Comedy is hard.” hasn’t died recently.

 

 

 

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Blake: there on his ‘sad height’

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Blake, on his perch

So the family has come and gone, daughter and grandsons from California and Texas. It went well. Blake basked in their affection.

Now he is in bed #3 on the Elder Care floor of a Toronto hospital, bombed out of his mind on hydro-morphone and offering acute observations: the doctors are being much too cautious; this is a total waste of time; they are not managing his pain – he can still feel it, not a 9 anymore, but even so a 3. In short, he has better things to do.

He sleeps and startles suddenly. “I’m awake,” he says. “What happened?” I ask. “I don’t want to lose control,” he says.

On Monday, the Palliative Care Team will come to assess his needs between 10 a.m. and noon. We will be there – Alice, his friend, Daniel, his son, and me, his ex-wife.

The traffic on this Feb. 23rd, 2019 was brutal. Two hours each way from my western suburb. I listened to David Bowie as I crawled along the Lake Shore. And cried.