Category Archives: death and dying

The Deathwatch Diary (Two)

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Go here to read Deathwatch Diary (One)

Every day, a fat seagull spends the afternoon sitting on the roof outside my mother’s hospital window. A nurse told me that, several years ago, a woman staying in the room next to my mother’s would leave some of her food outside her window for the birds. This last one is still hoping.

My brother thinks that my mother could beat the odds and become aware and pain-free enough to go home to live out the rest of her hours (or days). He wants a miracle.

This morning her blood pressure dropped and her pulse quickened. By her bedside, I sit and watch the read-outs for the meds that are keeping her comfortable and pain-free. It’s all about the numbers.

It’s all about numbers.

“You can never know for sure,” the doctor tells me this morning when I ask him how long she might have. The turbaned doctor is very kind, compassionate. Even his handshake is gentle. He is angelically patient as he answers the endless questions that my brother has in hopes of being able to have my mother wake up and see him one last time — see him so that he can say goodbye. When I am not angry at him I see that his constant arguing is a way to keep himself from feeling overwhelming grief.

I tell my brother about an “Allie McBeal” episode I remember in which an elderly dying woman on a sedative wakes up and asks to be put back on the sedative — because, while sedated, she is having an extended dream that she is living her young life, that she is young and alive instead of old and dying.

I ask my brother if it might be that my sedated mother is dreaming she is young again instead of old and dying. His answer is that maybe she’s not.

In reverie or not, I don’t want her disturbed. He wants a miracle.

It’s all about numbers: 94, 88/55, 1mm, one or two days. I watch the second hand move around the clock. I count her breaths — 18 a minute.

The Deathwatch Diary (One)

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My mother’s room looks out over a roof with the HVAC and other protuberances. But over the left corner of it all, I can see the Hudson River and the Palisades. I can see it, but my 94 year-old mother can’t.

Day by day, she grows smaller in the hospital bed on the oncology floor with the patients who are at the point at which “Comfort Care” is their last best option. My mother doesn’t have cancer, but, with advanced dementia (can’t swallow) and renal failure, “Comfort Care” is her last option as well, and this is the best place for her in this hospital. (At least I think so; my brother doesn’t agree.)

I have blogged about my mother’s condition before, and you can read those posts by searching this blog for “dementia” and/or “caregiving.”

For the past ten years (which, not coincidentally, is when I began this blog) my brother and I have disagreed about the effects on my mother of her journey into dementia. What he insisted was her usual stubbornness and feistiness, I believed, from my own research, was that insidious deterioration that had begun in her brain and would end just where it is ending. I had read The 36-Hour Day, I logged onto online forums on the subject of symptoms and care. I subscribed to Care ADvantage magazine to get tips on what to look for and how to help her manage the changes I could see in her behavior and her perceptions of what was going on around her.

My brother and I brought our mother to the emergency room last Sunday, after she had refused to eat or drink for several days, was obviously dehydrated, and had begun to tune out the world. In retrospect, perhaps we should have let nature take its course, and she might have simply gone to sleep at some point and never woke up. But she seemed in severe distress — couldn’t find a comfortable position to lie or sit in, and finally, unsuccessfully, tried to sleep sitting up. She had stopped communicating and kept rubbing her legs. We couldn’t tell if she were suffering, and so we took her to the hospital,

She is sedated, now, as “comfortable” as possible during this time when her body is shutting down. Her awareness already has, except for brief and seldom moments when she is physically disturbed and then responds with wide-open, red-rimmed eyes and an unearthly howl that resonates with a primal fear.

I have slept in her hospital room every night since she was admitted last Monday, listening to her labored breaths and getting up to check her when her breathing stops for several seconds at a time. When my brother comes to stay with her during the day, I take some time and slip away to shower, change my clothes, eat something other than hospital cafeteria food, walk in the crisp fall sunshine. The time drags while I am sitting in that room with a partial view, and so I knit, read, play games on my iphone, check in with FaceBook and my son’s Twitter, check my email.

But this isn’t about me.

Or is it?

Memorial Day is for the Dead

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I invite you to link here and read my son’s post, entitled as above, which begins thusly:

It says so right on the tin: “[Memorial Day] commemorates U.S. soldiers who died while in the military service”.

The key word in all of this is “died”, not “served” or, for that matter, “serves”. This day isn’t for anyone who ever found themselves in the military of the United States, or for those who find themselves there today. None of these truths dishonors living veterans (who have a day) or active duty personnel.

Death is different. Death is singular. Death is separate. Death is final. The point is to set aside a day in which we remember those whose service took them all the way past that final line. Whether or not they died for a just cause, they died in our name……..cont’d

And while I’m on the subject, I offer for your illuminination Mark Twain’s “War Prayer.”

Betty rules the age; Dixie dies too soon.

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At 88 years of age, Betty White still rocks and rules, and she demonstrated on Craig Ferguson’s Late Late Show the other night. I hope I can be a sharp as she is in another 18 years.

At exactly my age, Dixie Carter succumbed to cancer earlier this week. I never missed a performance of her Julia Sugarbaker on Designing Women.

Dixie Carter and Julia Sugarbaker. Gone but not forgotten.

Buddha waits for Spring

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buddha

Until the snows came, Buddha rested on a tree stump in the corner of our yard. Now he waits in the corner of the porch, along with bike helmets and what will be the starting of seeds.

I wish I could wait like Buddha, without anticipation or expectation. Waiting in stillness as lives begin and end, as the first butterfly finds its way to our doorstep, as somewhere on a mountain, an old woman cries for stillness.

an open letter to pharmacology professionals

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I need your help. Or rather my mother does. She is 94 and living in a personal demented hell where she is constantly besieged by overwhelming fears and anxieties. She lives with my brother, and their local family doctor is not very knowledgeable about dementia issues like my mother’s. None of the meds that he has prescribed have helped at all.

An acquaintance who trains nursing home staff told me that nursing homes bring in a pharmacologist to do an assessment and suggest a pharmacological treatment plan for dementia patients. Often it is a combination of drugs, and the process is carefully monitored and the drugs adjusted as needed.

Where can I find a pharmacologist who will come into a home and do a similar assessment??

After this weekend I will begin calling local nursing homes to see if they can recommend a pharmacologist that they use. I also have emailed national pharmacological organizations and associations to see if there might be a list somewhere of pharmacologists who specialize in doing those kinds of assessments.

No one should have to spend her last days in the kind of agony that my mother is in. I don’t know where else to go for help. Please leave a comment if you have any advice.

Vaya Con Dios

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It was 1953. I was thirteen and feeling my burgeoning hormones. I would tell my folks that I was going to confession and, instead, meet my friends at a soda shop with a juke box, located a few blocks away, where the owner let us get together in a back room. We closed the door and played “spin the bottle.” That was where I got my first kiss from a boy — to the music of Les Paul and Mary Ford.

Mary Ford passed away in 1977, and by then I was listening to the Moody Blues and Judy Collins. Mary Ford and Les Paul were divorced long before then. I don’t remember hearing anything about her passing, but

Les Paul died today.

Moody Blues and Judy Collins. Here no longer young, but, like Les Paul did until age 94, they can still move an audience.

when sleep won’t come

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I’ve tried just about everything herbal and homeopathic and over-the-counter. I’ve tried relaxation CDs and guided imagery. The only thing that works is a sleeping pill, and I will have to convince my doctor to prescribe some more. But I wish I didn’t have to.

I can’t fall asleep for one night, and my mom can’t fall asleep for good. And I think it’s all tied together.

I am helpless to help her, and her distress surrounds me even long distance, follows me into my own darkness.

I can’t bear to be with her and helpless to ease her distress.

Although yesterday, before I left to return home after five days trying, I sang to her, and she stopped her constant moaning long enough to try to sing with me.

“You are my sunshine,” I sang, and her straining voice joined me, mostly wordless, but struggling to carry the tune.

Down the street from where I live now, a teenage boy with some sort of autism sometimes sits outside and “sings” along with his audio player. The sound is haunting.

“Somewhere over the rainbow,” my mother sings with me, hauntingly, and for a few minutes, perhaps whatever mental and physical pain she’s feeling fades into the background of her distressed mind. We take the best cbd oil for anxiety to be able to feel better because we have tried many pill and none of them work as well when i go to sleep.

But not for long.

mom

I wish you could slip into that long sleep of peace, mom.

We both need some rest.

look for me at TGB

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I’m Ronni’s guest blogger today at Time Goes By, as she spends a couple of weeks in NYC at work and play, including participating in the Age Boom Academy.

From an 04/02/09 Time magazine editorial:

For the past several years, I’ve been harboring a fantasy, a last political crusade for the baby-boom generation. We, who started on the path of righteousness, marching for civil rights and against the war in Vietnam, need to find an appropriately high-minded approach to life’s exit ramp. In this case, I mean the high-minded part literally. And so, a deal: give us drugs, after a certain age – say, 80 – all drugs, any drugs we want. In return, we will give you our driver’s licenses. (I mean, can you imagine how terrifying a nation of decrepit, solipsistic 90-year-old boomers behind the wheel would be?) We’ll let you proceed with your lives – much of which will be spent paying for our retirement, in any case – without having to hear us complain about our every ache and reflux. We’ll be too busy exploring altered states of consciousness. I even have a slogan for the campaign: “Tune in, turn on, drop dead.”

Read the whole piece here. and go over the TGB to get my take on it.

the letting-go dilemma

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Stories begin somewhere in the bowels of truth. Do these things happen or do they not? Who is to know what is true? I only know my truth. And so I tell my story.

It is two days ago, and an April morning the likes of which we had been waiting for. I am sitting in a sun beam, leisurely eating a corn muffin, sipping a cup of green tea, and waiting for my mom to wake up. I am supposed to be in Albany, attending my friend’s quilt show and then getting together for mine and my women friends’ combined annual birthday celebration. But my mother is catching a cold and is feeling more miserable than usual.

He walks in, waving two different socks of hers, angrily accusing me of losing their mates in the wash. Later, I find the mates to those socks stuffed into the pocket of one of her jackets, along with balls of Kleenex and a comb. It doesn’t matter. As far as he’s concerned, anything that’s “missing” or “broken” is my fault. He will not let go of needing to blame me.

The newly hired live-in aide arrives the next day. She is a perfect “Mary Poppins” to my mom’s now childlike persona. She speaks Polish. She is kind and gentle and understanding. I wonder if he will wind up letting her go. Or, perhaps, like me, she will finally do the going.

My mother is more upset and upsetting than usual. Her nose is running. We think she has a fever. I catch her trying to bite into a paper plate and later find a wad of Kleenex in her mouth. She goes through boxes and boxes of the stuff — folding, shredding, tearing, and, apparently, trying to eat. She lashes out in frustration, smacking her hand against the wall, causing a wash of blue skin — just one more place on her body that will now hurt. Sometimes, when she’s quiet, when the air around her is quiet and we sit side by side on the edge of her bed, rocking and humming, she asks “What is happening to me?” “You just got old, mom,” I say, and start singing “Pack up all your cares and woes, here we go, singing low. Bye, bye Blackbird.”

And so I finally go, tired of the blaming, realizing that now he will have to find a way to coexist with the aide. She and I have similar approaches to caring for a frail, usually demented old woman, although she has a lot more practical experience than I. How will she deal with his enforcefullness (yes, I made that word up, but it says it all)? Will he let her do what she is there to do? He will need to let go of his need to control. I wonder if that is even possible.

My grandson’s cat Cuddles has not come home. It’s been two weeks since he escaped out the back door. They know he shows up in their yard at night because they have set up outdoor cameras. They leave food out for him. They bait traps with his food and their smelly clothes. So far they’ve caught a possum, a raccoon, and two tabby cats. But no Cuddles. My daughter goes out in the middle of the night and sits in the shadows, waiting to see if he might venture near. She said today that she just might have to let go of the idea of catching him. He will either come home or he won’t.

And my mother will either let go or she won’t.

And all I can do is tell my story.