He just left his body

This is about memory loss.

One of my patients eventually had to have her husband admitted to memory care. He was falling, he was angry, he outweighed her by 50 pounds and he was incontinent. When he fell, she could not get him up.

She went to our hospital Grief Group and came to see me, angry.

“They said he’s still alive!” she snarls. “I got mad and said, no, my husband is gone! He just left his body!”

“I’m so sorry.” I say. “I am sorry that they don’t understand.”

“I’m selling his stuff.” she says. “I don’t have any use for Ham Radio equipment. And HE doesn’t EITHER, now.”

She stomps out. I am sure she cried too.

That is how I think of Alzheimer’s. Neurons burning out from the present to the past. When the person can no longer talk, they are close. Then they are in the womb and stop eating.

Let them go, let them go, god bless them. Where ever they may be. You may search the wide world over but your memory person is free….

Songs to raise girls: Bessie the Drunkard’s own child

I am posting this from another site, originally posted November 2016. I am posting it because of a comment on a paper in my town about “homeless drug dealers”. It’s not the drug dealers that are homeless, it’s the addict. Ok, you can definitely have an addict dealer… But I worked hard to treat any kind of addiction, not only because of the patient, but also the family and especially the children. And every patient was a child once….

This is another temperance song that my mother taught me, learned from her father. Both of my mother’s grandfathers were Congregationalist Ministers in Iowa.

Out on the stormy night sadly I roam.
No one to love me, no dear pleasant home.
Dark is the night and the storm rages wild.
God pity Bessie, the drunkard’s own child.

Chorus:
Mother, O why did you leave me alone,
No one to love me, no dear pleasant home.
Dark is the night and the storm rages wild
God pity Bessie, the drunkard’s own child

We was so happy til father drinked rum.
Then all our trials and troubles begun.
Mother grew weary and wept every day.
Brother and I were too hungry to play.

Barefoot and hungry we wander all day
Looking for work, but “too small” they all say
On the damp ground to lay my head
Father’s a drunkard and Mother is dead.

Thus the two wandered, ’til one stormy night
Brother and sister both faded from sight
Then gazing at them, sadly I said
“Father’s a drunkard and Mother is dead.”

Cheerful, right? Again, I know the tune and only have the chorus memorized. My parents quit singing it in front of me so that I wouldn’t sing it at Show and Tell.

And small children shouldn’t hear this sort of thing, right? I don’t know. I learned an awful lot about the dark side of the world and danger from these songs. I found them helpful. I think they influenced me to be careful….

And think of the refugee children and children everywhere. This is still happening.

here: http://www.pdmusic.org/1800s/66fadamid.txt
and here: http://mudcat.org/thread.cfm?threadid=57166
The tune I learned is slightly different and darker than this: http://mudcat.org/@displaysong.cfm?SongID=6196
And some overlapping words with a different tune: https://www.youtube.com/watch?v=7ooDfYaH08E and https://www.youtube.com/watch?v=9KGiFkcxOus

The photograph is my maternal grandfather, F. Temple Burling, sitting on his grandfather’s lap. His grandfather was Morris Temple. My grandfather taught my mother this song and she taught me.

tubing

The oxygen tubing follows me everywhere.

I have a large concentrator for inside the house. There is long green tubing that I plug into the pale tubing that goes to my nose.

When I go upstairs, it’s a bit complicated. I have to unplug the pale tubing and plug the upstairs long green tubing into the downstairs long green tubing and the other end into the pale tubing. Then untangle it and I can walk around upstairs and still breathe.

To go outside, I have small cannisters. Unplug from the big concentrator, plug into the small cannister, turn the concentrator off, turn the small cannister on. Get purse and whatever the heck else I am carrying. Try to remember if the small tank is close to empty. I am carrying an extra small tank in the car. I have to turn the tank off to change the respirator, then bleed the remaining pressure, then take the respirator off. Yesterday I put the respirator on upside down. The tank hissed at me like a terrifying snake. I have warning signs in my front and back windows now: do not smoke, oxygen in use.

I took care of a man in the hospital overnight once who HAD smoked on oxygen. The ER doc called me to admit him. “He lit his oxygen on fire with a cigarrette.” “And how bad is he?” “We need to monitor his lungs.” “IF HE HAS LUNG BURNS SHIP HIM TO SEATTLE, HELLO!!!” “Well,” says the ER doc, “Ok, he’s probably fine, just burned his nose. But I am not quite comfortable sending him home.” “Oh, well, then, geez. Okay, whatever.” Wimpy ER doc. I didn’t mind once he was honest. The patient admitted that he did not want to do THAT again and yes, his nose felt pretty burned.

No smoking at my house. I am not tempted to smoke ANYTHING. When I was twelve, I smoked pretzels with my cousins and sister. They do not stay lit well but we laughed a lot. It was really fun.

I don’t have enough green tubing for the basement. So there are monsters and I don’t go there any more. No, I can use one of the portable cannisters to start a load of laundry. I am supposed to only use the portable cannisters when I leave the house. Used one yesterday to go in the front yard and garden. Stomped the spade in, levered up the grass. Wait and breathe. Wait. Ok, stomp the spade in the next place. Wait and breathe. Wait.

I get more oxygen on Wednesdays. Tomorrow. If I BEHAVE then after a month, I will get a small concentrator that I can walk around with. Then I won’t have the bloody tubing tail. I am seriously looking forward to that. I still will have the tail some of the time because the concentrator will have charging and a battery life and AUGH MY OXYGEN RAN OUT WATCH OUT WORLD I AM HYPOXIC AND DANGEROUS!

I trip over the tubing and it gets tangled and I get caught on things and it yanks at my head. My dance skills and balance are way better right now ON oxygen than OFF it. I am not nearly as neurologically whacked out when I have the oxygen. Makes me wonder… I don’t feel nearly as much OCD/ADHD/oppositional defiant. Well, ok, the oppositional defiance is rather baseline for me.

Makes me impatient, but then, whatever. I will still get stuff done. You are only as disabled as you decide to be and this will barely slow me down. Hope I get off oxygen eventually, but that is not clear. With repeat infections your lungs can scar. Hope not. Time will tell.

And donate to something to get oxygen to India. I can hardly bear to look at the news about it. I felt so awful with just mild hypoxic, that went undiagnosed for 5 weeks. Dying of suffocation is not fun. Donate.

speaking up 4

For the Ragtag Daily Prompt: sequelae. We don’t know what the sequelae to the Supreme Court vote is yet. But I am not going to stop speaking up and I hope more women speak up. And girls. So here are two experiences when I was a girl.

I start grade school in upstate New York. I am at the Northeast School. I don’t remember tons about it, except that it has ramps instead of stairs. I am failing to learn to read with phonics, which make no sense to me.

In first grade, I need to go to the bathroom. My teacher gives me a hall pass. This is not a kindergarten privilege.

Outside the girls’ bathroom are two boys. They are older than me. I don’t know them.

“You can’t go in unless you show us your underwear.”

I am wearing a dress. I stare at them.

“Show us your underwear.”

I go back around the corner and wait. Hoping they will leave. They don’t.

I need to go. I go and lift my skirt for a second, humiliation as they laugh. I hurry in to the bathroom.

I go back to the classroom.

I never go to the bathroom during class again. I am careful. I go before class starts and at lunch.

And I’ve never told anyone until now. And this was a grade school. How were the boys acculturated to behave this way already in grade school? And does this still go on? All the girls in my daughter’s school quit wearing skirts by second grade. Jeans only.

We move before fourth grade to another town.

The boundaries for the school districts change before sixth grade and I am bussed to a new grade school.

On the bus, a boy starts harassing me. I don’t know him.

“Show me your underwear.” he says. The other kids are watching.

I don’t answer, glare at him with scorn.

Each day he escalates.

“Show me your underwear.”

I pull a pair out of my bag the fourth day. “There. Now you’ve seen some.”

The other kids laugh, but it’s not enough. He keeps hassling me.

He starts reaching for my skirt from the seat in front of me.

I’ve had it. I play flute. But I also play piccolo.

The next day he starts up, “Show me your underwear.” He reaches towards my skirt from the seat in front. I have my hard piccolo case in both hands. I smash his hand as hard as I can, against the bus seat.

He screams and pulls his hand away, clutching it.

The bus driver looks in the mirror. He doesn’t slow down or stop.

The boy never bothers me again. And neither does anyone else on that bus.

____________________________________

I took the photograph when school started this year. This is our “city” bus. The Redhawks are our football team. I can’t think that football is good for us, but I thank the adults for this support for the high school students…..

Music gives me hope: this.

crossroads

Regardless of how the vote goes, I will keep speaking up.

It is so painful to have woman after woman saying, “I have stories too.”

And to the “nice” men who say, “I can’t believe that sort of thing. I can’t read about it. It hurts too much.” YOU are silencing too. YOU are part of the problem. As long as YOU refuse to listen, refuse to speak up, refuse to read about it: YOU PRETEND TO YOURSELF THAT IT IS NOT HAPPENING TO YOUR WIFE, YOUR SISTER, YOUR MOTHER, YOUR DAUGHTER. YOU PRETEND THAT IT ONLY HAPPENS TO “THOSE” WOMEN, THAT THEY ARE FEW, THAT IF THEY HAD TAKEN PRECAUTIONS IT WOULD NOT HAVE HAPPENED, THAT YOU ARE PROTECTING “YOUR” WOMEN.

Speak up, “nice” men. Are you ASKING the women in your life? Or are you silencing them?

Sweet Honey in the Rock: Joanne Little.

 

Speaking up

For yesterday’s Ragtag Daily Prompt: justice.

I keep hearing “Why didn’t she speak up sooner?”

I spoke up. I was 7. The abuser was a neighbor. Nothing was done. I thought it was my fault, that I was not a virgin, and that at age 7 I was pregnant. I did not understand puberty. I spoke up to my mother, who dismissed it.

So I did the only thing I could: I tried to protect myself and my four year old sister. I told her never ever to go near that neighbor. And I never went near him again.

I was taken for a well child check a month or two later. I didn’t say anything but I thought that surely the doctor would have noticed if I was pregnant, so I must not be.

I grieved on the school bus, thinking that I was the only girl who was not a virgin. I was wrong about the not a virgin, but I also was probably wrong about being the only girl.

I didn’t even realize that hello, I was seven, it was not my fault, I didn’t even understand what was happening. I didn’t understand until I was in college and heard a radio program about how women who are raped feel guilty. Here is a poem about that realization: The bacon burning.

So do you think I spoke up after that? Why would I? No one helped me and I was silenced. I learned this lesson: no one will help and I am on my own. I did speak up in medical school: Make a difference.

Where is justice? And do you really want us ALL to speak up now? About ALL of it?

When I was in my early teens, a friend of my parents french kissed me. He said, “I wanted to be your first french kiss.” Hello, I avoided him after that and did I want a french kiss from an old friend of my parents? He had a PhD but no boundaries, no emotional intelligence and poor ethics.

Shall I go on? In college I worked in two labs: both fruit fly labs. In one the graduate student was professional, courteous and quickly gave me a raise. In the other, I never saw the professor again and I was ignored. I went to resign from the second. The PhD professor said, “What do you plan to do after college?”

“What do you mean?” I asked.

“Do you plan to get married and become some man’s cow?”

Oh, really? Do you Mr. PhD professor refer to all married women as men’s cows? Would you have the same conversation with a male student? I quit. I don’t like you or your lab and that sort of comment reinforces my dislike.

In medical school we had two female physicians on the faculty. One was married but no children. Residents joked about her, that she had the balls in the family, because they were both physicians. The other was not married, an OB-gyn. We asked her to speak to our Women in Medicine group about children and career.

“If you want to be taken seriously as a physician, you should not have children.” she said.

I asked, “What if we have a house husband?”

“No man’s ego could stand up to that,” she replied.

I have children and a career.

I had worked in a clinic for a year and another provider talked to me. “Do you know that they are paying the other physician (male) twice what they are paying you?”

Oh, really? I set up a meeting with the administration.

“Oh, the male physician is the clinic director, that’s why we pay him more.”

This was a lie. I had been in the clinic for a year and there had never been one word that he was clinic director. The next year they standardized paying us by RVUs: his salary went down and mine went up. And so justice was done, right? No, the male physicians are given jobs such as head of hospice or medical director and extra money. Do they work harder? The jobs are not offered to the women physicians.

A male physician at the hospital was made chief of staff. He asks me in the hall, “Do women physicians just quit because they want to stay at home with children?”

“Do you want a serious answer?” I said. He looked surprised. We went to an office and I discussed that almost all the hospital staff were women at that time and that they have a different relationship with female physicians than male physicians. Most of the administrators were male, white males.

So really, do you want all the women in the US to speak up? Maybe we all should. The above is not anywhere near an exhaustive list, it is a start. This is just from thinking about it for two days. I can fill pages…..

 

 

 

 

freedom

For the Ragtag Daily Prompt #76: freedom.

Immigrant children separated from parents and placed in “camps”. This is concentration camp, jail. They have not been returned to their parents: https://www.npr.org/2018/06/19/621065383/what-we-know-family-separation-and-zero-tolerance-at-the-border. This is a horror committed by my country. Return the children to their parents.

The deer were in the empty lot across the street from my clinic yesterday. Both fawns went to check in with their parent when I got out of the car with my camera. Imagine the terror of a small child whose parents have been taken away.

Stages of Grief: anger

I am thinking of the songs that comfort me in grief.

And thinking about the stages of grief. Five, right? Denial, Bargaining, Anger, Grief and Acceptance. My sister said, “They left out Revenge and Acting Out. ” She died of cancer in 2012 at age 49. Six days after her birthday and the day after mine.

Anger songs for grief. But denial is first, right? Not necessarily. These are not stages you move through in a certain order. This is more like a spiral, where you go from one to the next and back to the start, from day to day or even hour to hour.

I’ve already written about My Name is Samuel Hall. That is an angry song, unrepentant, that my sister wanted the last time that I visited her. I knew that she was furious about dying and leaving her husband and daughter. And me and her friends.

My mother sang:

“Nobody loves me, everybody hates me, I think I’ll go eat worms. Big fat slimy ones, little tiny wiggly ones, see them wiggle and squirm. Bite their heads off, suck their guts out, throw the skins away. I don’t see how anyone can live on three meals of worms a day… without dessert….”

She also taught us this:

“I don’t want to play in your back yard
I don’t like you any more
You’ll be sorry when you see me
Sliding down my cellar door”

My parents had songs for every mood I can imagine. There were moods they would not speak about but they sang them.

My favorite angry groups are The Devil Makes Three, Hank Williams III, The Offspring, and Sweet Honey in the Rock.

Sweet Honey in the Rock? Yes. They sing about death a lot. This song is not about death: it’s about a “bad” woman, wanted dead or alive. But listen to the song: they are singing about a real event and a woman who fought back against a rape. On the thirty year album of Sweet Honey in the Rock, the group says that their first “hit” was this song, played by news stations. “It was a hint that we were not going to be top 40.” The song is Joanne Little.

So here are three songs by the others:

The Offspring: Why don’t you get a job?

The Devil Makes Three: All Hail

Hank Williams III: My Drinking Problem

And how do families show anger? They fight. They fight with each other. They fight about how someone should die, what should be done about mom, whether dad can live alone any more, about the right way to grieve. They fight about small things or big things and they even sue each other. Before you wade into the fray, step back. Remember, families grieving are always a little bit insane, very stressed and it’s all grief.

Hank Williams III: Country heroes

Blessings on the people I know in hospice right now and on their families and loved ones. Third one today. Sending love.

 

 

 

Mundane Monday #166: parent and child

My theme for Munday Monday #165 is parent and child.

I have this small statue in my clinic. I have a small collection of parent/child and mother/child art that I have collected for years. I was separated from my mother at birth, from my father and his family at 4 months and back to my mother and father at 9 months. I was sure that adults loved me but I did not trust them: they kept abandoning me.

As an adult I understand that it was because my mother had active tuberculosis and that the first separation saved my life. But…. I can love people, but trust must be earned.

A patient said last week that I had a political statement in my waiting room. “I do?” I said. He was talking about this statue.

If this is a political statement, I stand by it.

Attach your parent child picture, political statement or not. And much love and hope for every parent and child and love.

One entry from last week, Mundane Monday #165: sand:

KL Allendorfer: Sand.