Fin

Thursday afternoon in the community library during my respite period.  I had contemplated staying home up in my office to either write or begin the odious chore of getting my tax material in order for my appointment next Thursday with my new tax preparer.  Because I am really not in the mood to confront that necessary chore today, and because I am pulled to continue writing my way through this extraordinarily difficult period, and because getting out of the house is always a way to recharge my batteries a bit, I am here.  The tax material will still be waiting for my attention.

Hanna has been coming almost daily, but she is skipping today. Yesterday, Nic, the hospice social worker visited.  I was glad he did.  I was going to call him to invite him out but when I came home from shopping Tuesday afternoon, I found a message from him on my land line phone.

I had been thinking about talking to him as a follow-up not just to all that had been happening over the past week, but specifically as a result  of a suggestion that my brother-in-law Ward had made.  He called me as I was on my way into town to do my shopping and we wound up speaking for close to half an hour, much of it while I was parked in front of my first stop at Burritt’s meat market.  What stood out in that conversation besides Ward’s very welcome supportive comments was a particular, very practical suggestion: I should now make sure whom I would call when I would be facing Carol’s lifeless body.  I’m expressing the idea more bluntly than Ward did, but that is what we were talking about.  You would not want, he had said, at that stressful, emotionally wrought time, to have to figure out how to deal with the practical necessities, specifically the person or agency to call. And beyond that to at least have some idea of how I wanted to handle the final arrangements.

I had thought, if I had thought about that unthinkable yet inevitable, moment at all, that I would call hospice.  I believe my Tuesday aide had suggested that idea when I told her about Ward’s conversation. That seems and seemed reasonable but would not have sufficed because at that point I would still have to figure out who should be contacted to perform the necessary end of life service of collecting the body.  Contacting hospice would, in effect, just transfer that decision to it. It would be well for me to have researched possibilities and, if possible, to have made a decision.   I surely could still call hospice, who could then take over the necessary calls, including the one to the funeral parlor service I had chosen.

Ward’s suggestion turned out to be prescient.

From that point in my conversation with Nic, and being absolutely without any experience organizing a funeral, and never really having given that process any thought, I asked him to provide me some basic information.

Which he did, including, at my request, some estimates of cost, as well as possible services that would be offered.  He asked if I would like to have more specific information.  I said yes, and he agreed to call several places of good reputation.  I had told him that my preference, as far as my thinking had gone, and although it hadn’t gone very far, it had been abundantly clear, was that I wanted something simple, small, and private.  I also intended within those boundaries to respect Carol’s family’s wishes as well as I could.

This morning, I received an email from Nic reporting on his research into the several companies he had mentioned.  I am now prepared to make a decision.

A decision that is crushingly difficult to contemplate.  I have acquired retrospective respect for all those grievers who organized the funeral I in the past have so mindlessly attended.

I have been keeping Carol’s siblings and my daughters informed.  I asked the siblings to communicate these sad tidings to the extended family.  I am aware that Danielle, our daughter, now intent on leaving her current job as well as the state of Minnesota, is in the process of long distance interviewing for a new position in Pennsylvania.  She said she would find a way, whether or not she gets the new job, to spend some time with me and her mother.

I also, in the context of pursuing my intention of getting Carol’s story collection published, contacted friends at Mission Point Press, and informed them of the turn Carol’s condition had taken.

I might send separate emails to particularly close life friends, and perhaps a few writers who knew us as fellow practitioners.

As devastating as all of this has been, as emotionally overwhelming as it no doubt has been, and will continue to be, I find a little relief in brushing off my ancient administrative tools to work my way through this uncharted territory.

Doing that, and finding the time, energy, and inclination, to keep my writing career going by producing columns, keeping this journal and from it creating blog posts, and occasionally, still, marketing my work, all of that is necessary to keep my equilibrium.

Time to leave the library.

Friday afternoon, eight days after the above.  I am in my office at my desktop, and will summarize those intense eight days.

On the previous Friday, Carol’s swallowing difficulties had increased. I stopped trying to feed her nourishment. Hanna and I talked about transferring Carol to Munson Hospital Hospice on Monday. I agreed with Hanna’s suggestion to hire a private duty caregiver, who arrived in the early evening. She was willing to stay around the clock until Monday morning although she was not sure we had that much time.

She would keep Carol comfortable, her mouth moistened, her position changed, and any pain deadened by a steady dose of morphine.

I told Danielle that now was the time for her to come for what looked like a last visit. I also kept daughters Tracy and Kerri in New York informed. Danielle set out from Minnesota and arrived Saturday evening, a little after Allison, the private duty caregiver had arrived and had taken over responsibilities.

On Sunday evening, after what were now regular visits from the hospice nurse, Danielle and I went out for dinner after waiting for the hospice grief coordinator who was scheduled to come. She was delayed, and so I informed hospice to tell her we were going out and she could visit tomorrow.

As we were about finishing our meal, my phone rang. It was Kristi, the grief coordinator. I began to apologize for postponing her visit until tomorrow.

As soon as I got those words out, she said, “Carol just died.” She asked if I wanted to stay at the restaurant while they took care of things. I said we would be home in a few minutes. Once there, when the workers from the funeral home came, I talked with them as to the best way out of the house, and then sat in the green room until they were gone.

I did not want to witness the removal itself. I had said my good-bye with a kiss on Carol’s still warm forehead, looked for as long as I could tolerate, only a few seconds, at her still very pretty face.

Danielle stayed through Monday, and then got in her car to travel back to Minnesota. Tracy flew in from New York and arrived not long after Danielle left. She provided immense comfort over the next few days as I, along with Ward and Jane, met with the funeral director and worked on composing the obituary. When I wasn’t writing, Tracy was there to talk to or just as important to be there when we were both working, she on the work she had taken with her, and I on the obituary. When the funeral director called, I put him on speaker phone and asked Tracy to listen to what he said with her attorney’s head so I got things right. I was not thinking all that clearly.

Ward and Jane helped me disassemble the hospital bed and move the pieces into the garage. I did not want to see it.

I went about informing friends and relatives.

Arrangements that had to be made have been made. There will be a graveside service. With the help of the family, I have written the obituary, and made plans for a memorial reading of Carol’s stories.

This hideous ride is over.

Epilogue

At ten thirty at night, I sit in the green room watching a March Madness basketball game without much interest because one team is getting thumped and the outcome is not in doubt.  I think about finding something else to watch because I am an hour or two short of my usual bedtime.

But the clock turns my attention to the hospital bed in the next room. Isn’t it time, in a few minutes, to settle Carol for the night?  To make sure she is clean and comfortable?  To climb into the bed with her lying on her side and throw my arm around her, take her hand, feel, perhaps a responsive squeeze from her, stay there with her until her breathing announces her sliding into sleep?

But she is not there.

The hospital bed is disassembled and in the garage waiting to be disposed of some way, along with all the other medical equipment associated with her illness.

I realize that for the past two years or so I have been living a fiction of my own creation that I was still living with the Carol I had loved for almost forty years, a fiction fed by occasional real or imagined responses that encouraged me to continue talking to her, to tell when I was going out to get the newspaper or the mail or upstairs to shower or that we were going to move into the kitchen for breakfast or to the dining room table for dinner, what we would be eating at either of those meals, to sit with her while first I fed her meal to her, her own hands useless, watching her swallow and drink, finish meals with her meds in applesauce, and on days certain plan how to use my respite time whether shopping or having lunch with my buddies or working in the library, and then back home again to pick up the same routine from morning to when the clock reached just about eleven at night after which I would work on my laptop for some time and then settle down myself onto the couch  a couple of feet from her bed, where I could hear her restless movements and her breathing.

But not now.

That book is closed. 

I must somehow start a new one.

Later, upstairs in my office.

I reach over to my desk on which sits the ancient, manual perpetual calendar reading August 12th, the day Carol could no longer climb the stairs up to our bedroom and her long decline began.

I turn the device’s wheels to today’s date.

And so I begin.

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9 Responses to Fin

  1. Suzanne Kuuskmae says:

    Thank you for this description of what transpired and now comes the time to reinvent your life. We wish you all the best. Sue and Mati K

  2. Kathleen flores says:

    Tears. Thank you for all these articles . Good luck to you where ever you go from here.🌹

  3. Wendy Warren says:

    The obituary is a beautiful tribute to your lovely Carol. I wish you peace and strength in your upcoming journey.

  4. Trudy says:

    Yes. The end. But not of the book, Steve, the end of a full and devoted chapter.

  5. Kathryn Benjamin says:

    Thank you for your thoughtful portrayal of Carol’s journey and yours. I watched my father go through a similar situation, Parkinson’s dementia. He developed swallowing problems and stopped eating. The decision to not place a feeding tube was heart-wrenching for my sister and I. Three years earlier, my mother, Caryl, passed in my arms after fighting breast cancer for 12 years. Difficult and sad times. You have good memories to comfort you.

  6. Susan Cummings says:

    A fine, refined, strong, so curious, sensitive and creative, light has gone out. It is hard and very painful to grasp.

    Thank you so much, Steve, for sharing your writing–heartfelt, beautiful– all these months.

    I imagine you are in a daze with a million emotions floating around. I hope the spirit of Carol, her love for you, and yours for her, comfort you.

  7. Lowell Kleiman says:

    Steve,
    We are with you, knowing Carol and your fortunate life together, as the lucky ones of us who share your fortune. Yet there is a Yiddish story about Sam and his long-time loving wife, Sarah, who after 60 years of (mostly) blissful marriage, Sarah dies. At the funeral, the pallbearers accidentally bang the coffin against the turn in the wall leading to the exit. A ‘quafah’ is heard — she is alive! Miracle! Sarah lives for another ten years, but, as things go, she (again) succumbs to the inevitable. This time, at the funeral in the same chapel, Sam warns the pallbearers — watch out for that turn!

    We are with you.

    LK

  8. Pat Mattimore says:

    Steve,
    Your deep love for Carol was beautifully shown in your blogs over the last months. Carol was very lucky to have you in her life. May you find peace in the days ahead.

    Sincerely,
    Pat and Jim

  9. Sheila Fox says:

    Giving of yourself through your writing of the “On Dementia” blog has meant so much to Lowell and me. We were able to feel close to you and Carol and it is so difficult to realize that she is gone. I offer you this poem by W. H. Auden called “Funeral Blues” which he wrote after the passing of his friend Christopher Isherwood. We wish for you a way forward with strength, loving memories and peace.

    “Stop all the clocks, cut off the telephone,
    Prevent the dog from barking with a juicy bone,
    Silence the pianos and with muffled drum
    Bring out the coffin, let the mourners come.

    Let aeroplanes circle moaning overhead
    Scribbling on the sky the message ‘He is Dead’.
    Put crepe bows round the white necks of the public doves,
    Let the traffic policemen wear black cotton gloves.

    He was my North, my South, my East and West,
    My working week and my Sunday rest,
    My noon, my midnight, my talk, my song;
    I thought that love would last forever: I was wrong.

    The stars are not wanted now; put out every one,
    Pack up the moon and dismantle the sun,
    Pour away the ocean and sweep up the wood;
    For nothing now can ever come to any good.”

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