On the road

My friend is still on the road, but moving closer to the end. Referral to hospice, now, though nothing is imminent. She is not home yet, though we hope to get her there. Yesterday another friend and I took her to see her cat. The cat is being cared for and is more social with everyone.

For the Ragtag Daily Prompt: end of the road.

Soft my heart

Soft my heart forgives and lets go,
lets go of reconciling. We won’t. I won’t.
I have waited long enough. I forgive all
and I am done waiting. I let it all go and
walk forward into a different life.
The Sufis lead me: the teacher must judge when
the student is ready. I am not a teacher.
I am always a student. I want to learn
always and change. I let go. Farewell, my dears,
you still have my love but you do not have me.
I no longer care, I don’t long for your love,
I let you live your stuffed and twisted lives
in peace, without me importuning you,
to listen to think to grow with me
and you don’t want to so I am free.

____________________________

Written February 17, 2024. As with most of my poems, I don’t know how it will end until I write it. Poem as prayer. The ending surprised me, too.

For the Ragtag Daily Prompt: reconcile.

I don’t know who took the photograph. From left to right, my sister, cousin, me, cousin, taken at Lake Matinenda in Ontario, Canada.

Stitch

I like to play with word cliches
Geraniums red and chrysanthemums white
As I wander busy through my day
Delphiniums blue, all are dark at night
Least said, soonest mended
Except for murder, rape and pillage
Loose lips sink ships, war ended
Sinner gossip round the village
Time will mend a broken heart
A stitch in time will save nine
You’ll never finish if you don’t start
Mend that heart and change the rhyme
Absence makes the heart grow fonder
Your love grows daily, what a wonder

For the Ragtag Daily Prompt: absence.

Elder Care: Goals

I really enjoy elder care in Family Medicine. Mostly. Even some of the very difficult or very complicated people.

One thing I would try to figure out is what is the person’s goal? This can be quite funny at times.

“Can we talk about what you would want if you got really sick? If you were too sick to talk to us?”

“I don’t want to talk about death.” Ok, this person is in their 90s.

“That is fine, but if we don’t talk about it, your daughter and I have to guess what you want. And we tend to do more when we don’t know.”

That person glares at me. “Oh, all right.”

Sometimes a person says, “I don’t want to die of cancer.”

It turns out that this is an opening. “Ok, what DO you want to die of?”

“I don’t want to die!”

“Well, me either, but I can’t fix that. There are at least three “ideal” deaths that the Veterans Administration talks to people about. Maybe we could go over them. You could put your request in with your higher power.” I have written about the three here: https://drkottaway.com/2023/10/06/an-ideal-death/. The “Hallmark” or hospice death, sudden death and fight it all the way.

But, other than not dying, what is the goal? To stay in one’s home? To move to a retirement organization that has a nursing home and care until death? Home care insurance to stay home? I do have people imply that they will go into the woods or crash their car or something if they get very sick, but not very often. They are usually aware that I have to respond to any suicide threat. How much care do they want? People often say, “I wouldn’t want to be disabled,” but it turns out that life is often worth living even when very challenging. Most people want to be treated for cancer, for heart disease, for congestive heart failure, to go on.

Sometimes death comes from a cumulative load of chronic problems. We had a gentleman in his 80s in the hospital ICU many years ago. He had pneumonia, congestive heart failure and bad kidneys as well as a host of other problems. I sat down with him. “We are treating you, but when we give you enough medicine to help you breathe, your kidneys are getting worse. This is a small rural hospital. I could transfer you to the Seattle hospital, 2 hours away. You would have a cardiologist, a kidney doctor, a lung doctor. Here you just have me and the nurses. Either way, I do not know if you will live through this. What do you want to do?”

He chose to stay. “My family can visit me here.” His family was visiting daily. “I do not want a breathing tube. I do not want dialysis. If my kidneys go, let me go.” We discussed this with the family.

Four days later it was clear that without dialysis, he was dying. Dialysis might have slowed it, but he may still have died. He was no longer waking up. We withdrew the antibiotics and removed most of the monitoring and switched him to hospice. His family continued to visit and he died a few days later.

He did die in the hospital, and yes, we used some machines up until care was withdrawn, but this still seems like he got to make choices and his family understood. It can be much harder with memory loss when the person really can’t make choices any more.

He was complicated. To keep him breathing well without a machine, we had to give him diuretics, that were eventually too much for his kidneys. A bad heart, lungs with emphysema and pneumonia, and bad kidneys. Sometimes the liver is not working either, and then what is there left to work with? Nearly all drugs are broken down by either the liver or kidneys. Simethicone is not absorbed, so that’s the exception.

Sometimes people get along until too many things accumulate and then they end up in the hospital and on multiple new medicines. It can be very confusing. Regular maintenance is a good idea.

Sometimes the family wants something different from the patient. Or there is an elder parent and three adult children, who all disagree. My job is advocate for the patient. But this is Family Medicine, so I have a responsibility to the patient but also to the family. The person, the family, the community, how is it all fitting together? Sometimes functional, sometimes not.

I had one person who called me when he had been flown to a Seattle hospital. “I have to get home.” he says, “Can you release me? I have to take care of my wife!” I panicked for a moment. “Is your wife bedridden? Where is she? Why are you in the hospital?” She was not bedridden and she was fine. He was being more and more behaviorally squirrelly. He could no longer drive, but drove anyhow. His wife disabled the car, because he would disappear. I sent him to a neurologist for memory testing. The neurologist said, “Hmmm.” and sent him for neuropsych testing. The neuropsych report said dryly that his memory was fine, but he had certain long standing behaviors related to past heavy alcohol use. Oh. He was quite proud of not drinking and going to AA, but he also triangulated with his family and me. I sat him down and said, “Ok, I am not going to talk to a different one of your five children every time you see me in the clinic, because you’ve said, “Don’t tell mom I called you.” Pick ONE person for me to talk to and now you have to have a family member with you when you come to clinic.” He grinned and chose his wife. He had certainly fooled me about his memory, because he blamed his behavior on his memory. The neurologist was not quite fooled. The family calmed down and he did not drive any more, thank goodness. He was not an easy patient, but he was entertaining and educational too. And I felt that I had helped both him and the family.

Sometimes families fight. Sometimes a dysfunctional family will get way worse when someone is sick or dies. Sometimes families go on fighting. Other families are so kind and so good to each other and their elders. Every family is different.

For the Ragtag Daily Prompt: concentration.

Delicate

I think of what is delicate in all our wide wild world
Our world itself? Yes, but more. Peace among people? No, peace
is strong as war, peace lifts my heart and roars, hoping others hear.
Most delicate is the human heart, all humans. Covid has damaged
the human hearts, we fear, we grieve, we stress and lash out
and so we go to war and wars and argue with each other.
Human hearts turn outward, we cannot see the virus and feel helpless
as the subtle battle is fought and doctors and nurses and scientists
research and die. Human hearts want an enemy they can see, they can fight
and what is better than another human? Every human is different
so there are many choices, to fight over the differences. Let us stop.
Gather our wounded, clear the rubble, find the dead and bury them.
Let us stop and cry and weep and tear our hair.
Let us mourn as a world our dead and the damage to the human heart.

___________________________________

For the Ragtag Daily Prompt: delicate.

Mortal

I am feeling mortal.

I am in my post-pneumonia phase where people say, “Well, you LOOK great.” This is round four, so it’s not a surprise. It just took two years this time, instead of two months. In 2003 it took two months.

There are various things feeding in to this. A friend my age has had a stroke. “NO!” I think, “TOO YOUNG!” The death of the actor from friends bothers me mostly because he’s nearly a decade younger. Drugs and alcohol shorten the lifespan by quite a bit. A study checking for five things: inactivity, drugs, tobacco, alcohol and very heavy weight showed that the people with all five tended to die 20 years sooner than the people with none. That study was at least a decade ago if not two. So cross off about 4 years for any of those, sigh. A cardiologist recently said tobacco is worse than alcohol and now I am wondering how much worse? And how do they measure that? Tobacco kills more but serious alcohol use is a lot faster at killing people. Both of them affect all body systems: GI, heart, lungs, brain, bone marrow, liver, kidneys, and so forth. Even skin.

Also, the last lung test was still abnormal even though I am off oxygen and feeling mostly good. I am having muscle trouble though. Every morning I wake with really bad pain in both thighs and whatever muscles I’ve been trying to build. This has been going on since at least August. Since I think that this is an antibody disorder, it implies that the antibody baseline has risen to the point where my muscles are grumpy and hurt. Alternatively it could be a Long Covid issue: microclots could be clogging the capillaries in the muscles when I exercise and causing hypoxia in muscles, which means they can’t build. Muscle cells are fascinating. When you exercise the cells need more food and build new insulin receptors in the cell wall. So exercise changes the individual muscle cells! How very amazing. My muscles are resisting the build and it is very annoying. There is research going on re the microclots, but there is bleeding risk from the anticoagulants including strokes. So, um, well, I seem to be stuck. It is not stopping me from hiking and dancing and being active but boy does it hurt in the mornings.

This is not very bucolic, is it? I am still attending the Long Covid talks and it is really fascinating and quite scary. It’s just a very very nasty virus. I wish it would calm down. The 1918-1921 influenza really calmed down after three years, but there are no guarantees. Anyhow, at least I can dance!

For the Ragtag Daily Prompt: bucolic.

The photograph is taken in Michigan in 2014.

Music to my ears

I grew up with lots of music. My father played guitar and lute and Segovia is engraved in my memory. He and my mother sang in large choruses: the Brahms Requiem, the Mozart Requiem and Bach. We had lots of classical records. I was born in the early 60s when my parents were in college, so they had tons of records. The Band, Bob Dylan, the Loving Spoonful, Joanie Mitchell, Oscar Brand and Jean Richie. I didn’t buy my first record until I was in my early teens and I bought ABBA. My father said, “This is POP!” I said, “I am a 14 year old girl. OF COURSE it’s pop and it’s really good.” He was mildly horrified.

We sang folk songs. My parents were editing them by the time I was three, because I was memorizing the words. They put the naughty folk song records away. They avoided sentimental songs. We learned “dead girl songs”, as my sister called them (Banks of the Ohio, Long Black Veil, Clementine, When I was a Bachelor, there are a lot of educational dead girl songs). We learned lots of comic songs. We also learned work and protest songs and absorbed our parents’ hatred of discrimination.

I set up a recording session for my father and sister and I after my mother died. I have a recording of us singing Long Black Veil and other songs. Here is The Band singing it.

Let’s have a band with women too, and for me that is Sweet Honey in the Rock. Acapella, with a sign language translator, and now they have been singing for ?forty years? They have amazing children’s songs and they are willing to sing about grief and protest. They have sustained me through the loss of my mother, sister and father.

And from one of the children’s albums.

The photograph is of my father at his 70th birthday in 2008. Malcolm K. Ottaway, with Andie Makie and Coke Francis. Andie is playing harmonica, my father on guitar. Malene Robinson took these photographs. The next is me and my sister at that party.

And one more of my sister, Christine Robbins Ottaway.

For the Ragtag Daily Prompt: bands. Wait, you said keep this light. Oh, well. Fail on that.

Fun in hell

Even when I go through hell on earth
mother dies, marriage crumbles
sister cancer, father cries
divorce, sister dies
pneumonia, pneumonia, pneumonia
can’t breathe and still have to defend myself
when accused of crazy and reported
Bitch is not a psychiatric disorder
hypoxia is not a psychiatric disorder
my cousin helps my niece to sue me
I never thought my family would have lawsuits
never
yet my sister sets them to explode
after she dies

I don’t quite die
though it is pretty rough
and grief tears at my throat
like a wolf, like a lion
like a hyena,
piranhas
I have two children and I stay
because they do not deserve this mess
I guard and fight and stay present

And there is laughter
even in hell
I time a comment and my daughter
snorts milk out her nose
I tell my children I shouldn’t handle knives
because of a meeting at work
“Five against one?” says my son
“Yes,” I say
“Well, they didn’t have enough people, did they?”
And I laugh and we go out to dinner.

Is this my fault?
Is it something I did?
The marriage was me, yes,
I do two years of counseling
trying to understand
I can’t change it
but maybe I can understand

A sort of a friend
ok
a false friend
a liar
says he never changes.
I say I always try to learn
I want to know
I want to grow
how can he not grow?
how can he refuse to learn?

he doesn’t talk to me any more
he stops speaking to people forever
but
there is no forever
there is now and the Beloved
and the dark and the light are united
after death
will you be a proton
or an electron
or gravity?

There are hells on earth
worse than mine
prayers
I send prayers
for the innocents
everyone was newborn
and innocent
once

An ideal death

Death is quotidian, isn’t it?

There is a movement to make death more ideal. I agree that we should talk more about death and find out what people want, but ideal is complex. The VA did a survey and found three ideal deaths. Which is your ideal?

  1. The Hallmark Death. In hospice, surrounded by family and friends, making peace with everyone, visitors from all over. My mother died of ovarian cancer. We had a hospital bed and a baby monitor and when she was awake, she would say, “I am ready to be entertained.” It lasted for 6 weeks and my grandmothers bones rose out of her face as her weight dropped. I was so tired by the end that I couldn’t see straight. She did not want us to cry, so my sister and I did not cry. Afterwards I wished that I had cried.
  2. No warning, sudden death. Take me, in my sleep, or suddenly, with little or no warning. The heart is the number one cause of death. My father went this way, in his home. I was the one who found him, though I’d expected it for over a year. He was a bit of a hermit and had horrible emphysema, was on oxygen and steroids, but he stayed at home. That’s what he wanted and I did not fight it. It was not much fun finding him.
  3. Fight every step. There are some people who remain full code, who have end stage cancer and want dialysis, who will not give in. My sister was in this category. She was a truly amazing fighter and refused hospice until the last week. This can be about believing that one can continue to hope for a miracle or it can be about social justice or about a promise to one’s family. Some families have said, if father had been able to access care earlier, he wouldn’t be dying, so he wants everything done. I can understand all of those feelings.

So which would be your ideal? Ideally we would talk to our parents and our children and explore these different ideals. I did that with people in clinic. There are interesting openings. A patient would say, “I don’t want to die of cancer.” I would say, “How do you want to die? What is your ideal?” They would be surprised and I would explain the three different scenarios above. “Put in your order, though we do not have any control.” I would say.

We do not have control. I did prenatal care and deliveries for 19 years and didn’t have control there. I always preferred to intervene as little as possible and only if I had to for mother or baby’s health. Once our surgeon went to take out an appendix and it turned out to be something else, so took three hours. I had called a cesarean section, but had to wait. The baby had a fast heart rate and it rose in those three hours. We finally did the c-section and the baby promptly looked completely fine. I have no idea why the heart rate rose from 140 to 180. We were all hugely relieved. Sometimes the cause was obvious: a short umbilical cord or a cord wrapped four times around the neck, but sometimes the cause is a complete mystery.

I talked to a person yesterday who has a frail 90 year old in their life. They said something about keeping them from dying. I said, “Well, they are going to die eventually.” Then I thought, I wonder if they have had the discussion: what is your ideal? Do everything, which may mean being in a hospital? Hospice? At home? And I sometimes see families fight, because siblings have different ideals and may not even be aware of it.

Blessings.

For the Ragtag Daily Prompt: quotidian.

I took the photograph of the neighbor’s flowers while I was walking the cats in the dark. I like it.