I wrote most of this from the hospital, I was there all day yesterday. Two days running actually. Being at the hospital is way different from being in the hospital. You see I am the caregiver. I am at the hospital. It is my elder, the woman I care for, who was once again, in the hospital.
Is this uncommon. No - it is not.
I am recording this on Saturday. Out at the farm. Before it is time to go back into Town to begin again.
You see, recently I have taken over the care of my Mother In Law the Matriarch. After a mild stroke her plummet into dependency has been swift. I have had a little nursing experience ( way back in my youth) focused on geriatric patients. (This experience is one of those little gems we stack into our pockets to pull out and use again later). Plus I have known her since I was a teenager. So I was a natural choice to be the lead in my mother in laws care.
Though choice is too considered a word. This role is more assumed than chosen. My assumption. My choices.
In this family they call me The Handmaiden. Which was amusing years ago - not so much now.
And just so’s you know the number of unpaid family caregivers in the United States has increased to 53 million caregivers in 2023. At least. Experts project that more than 1 in 5 Americans will be 65 and older by 2030, and 70% of these people will require some form of long-term care and support.
Thank you Aunty Google.
And most of that support will be from people like me, the caregivers out there - an unacknowledged army of unpaid - invisible workers. Whose lives and the lives of their families are turned inside out by the cracks developing in their old peoples lives.
We spend literally half our time traveling to or from or with our beloved elders. Shepherding them and feeding them and getting them in and out of bed. Gently washing their worn out bodies and dressing them in soft clothing. Monitoring exercise and diet and blood pressure and rosters for the minders.
Anyway. Let’s go back to the beginning of this episode.
Back to the morning before yesterday morning.
Thursday morning.
It is Thursday morning I am sitting in the dark writing.
I am writing on my phone. Because I left my laptop out at the farm. My mother in laws house is in a little town in central Illinois. I am at her kitchen table. It is 4.30 am in the morning. Dark. One light above me. Once again I was trapped here (in town) (last night) by a change in her condition that indicated I should stay the night to support the night minder who is her grand-daughter. Usually I manage the days. But I need to stay in here maybe two or three nights a week.
I have a bag just for this kind of event so that was not a problem.
I have been up and down five times tonight getting her out of bed to the toilet and back in. We have a routine but she is a heavy lift tonight. She seems very weak these last few hours so I am taking her into the doctor this morning. Something is not right.
She had a change in medication yesterday that I think is the culprit. We are trained to trust doctors implicitly but I don’t believe in that - I think every patient needs an advocate with a healthy dose of skepticism. Especially pertaining to drugs. Doctors are detectives they employ a process of elimination and we can help them with that by staying vigilant and speaking up every time we get the feeling that the drugs are wrong or a symptom (a clue) has been missed.
She has been complaining of a post nasal drip which I am not sure of.
I am trying not to blame the pills. But my elder The Matriarch was a robust quick witted woman until they began her on these chemical interventions after her mild stroke. And we all know how unscrupulous pharmaceutical companies are. How they seem to have influence in what a doctor prescribes. How one drug causes a problem that only another drug can fix. Which seems suspicious.
This of course from someone (me) who doesn’t go to the doctor therefore is on no pills at all. But I am a writer - I am trained to observe.
This latest drug change has knocked her about. This old lady in my care. So at the kitchen table this morning I am working my way back through the meds to see what the problem might be.
At the same time as writing to you I might add. Because - as you know - I write. Everywhere and on anything.
It is getting lighter outside - I can hear her stirring. I wait but she has gone back to sleep.
I read this article in the doctors waiting room the other day about us writers setting aside sacred writing times. I scoffed as I closed the tab, hearing the doctors tech calling to us.
I have no sacred writing time now. I steal time to write.
As I comb her meds and their side effects a sentence will come to me or a phrase and I will quickly jot it down. I develop content regarding sustainable practices. Not on how to regrow left over carrot stalks but how to re-imagine your life into a sustainable planet friendly form - a form that you could sustain. It is a wonderful rich full subject because I also run a sustainably managed organic farm. Sustainable is a key word for me but it is flawed because life itself - our lives - the life times of our bodies - by their very nature of tissue and bone and blood cannot be sustained. The old people teach us this. As the old codger said - we are none of us getting off this boat alive.
Our bodies wear out. It is a given. This headlong rush to put off death clouds our thinking. Taking drug upon pill upon intervention. The cycle of life is too precious to waste time trying to out run death. We need to Love it. This is what we can sustain - rolling with change and loving the ride. We caregivers know this. We do not have a lot of time. If we are lucky we will leave behind words or images or children or dynasties. Or land or trees. But let’s not rush to bat off death until we get to that bridge and cross it.
But I digress. I don’t have time for content now. I am writing this piece in snippets. Because I have a person who is in trouble and I am sitting here at the kitchen table trying to work out what is amiss with my elder.
This morning I feel the weight of the responsibility of keeping this woman alive for her children and grandchildren and great grandchildren. We ask a lot of our caregivers. Especially a caregiver who is a family member, unpaid and untrained.
Putting their passion aside to help. Some people don’t see writing as real work - they assume we have lots of time on our hands. We write in the night like elven shoemakers. The majority of us writers are not even well paid. And badly paid jobs are lesser somehow in the grand scheme of things. And so I manage the affairs of this elderly woman, who has been a surrogate mother to me since I was a wild 16 year old girl. She is important: all the ones we care for are important. Their end is important too.
Do you remember what Mrs Mooney said; write what you know. So here I am writing about elder care, it is all that I have in my head right now. Not long ago, the other day, I felt long and lean and sexy and wild - this morning I just feel tired - a bit drudgy. And hungry. Always hungry. Caring for the elder plus her house and family plus managing one’s own life and farm and house and family does not leave a lot of time for food. She is the best weight loss program so far.
And I bet this happens to lots of other caregivers too. You?
I hear her in the hall. She has come out to visit the bathroom. I need to write down how she walks I think as I hold the door for her. The walker gives her a defeated hunch, she is almost but not quite in control of her body. Slowly losing that confidence of movement. Her arms and legs are off kilter. Lurching. But in a considered way. She pauses before each turn as though reconfiguring her compass. She is on an angle somehow, crouched listing to port over the handle bars of this ridiculous walking frame. Her mind is totally focussed on not falling. Not falling has become our whole life.
I was away two hours yesterday. There was no one else to help do the haymaking. So I tucked her up for her nap, checked in every half hour on the phone which drives her mad but I was driving a tractor so what can you do. I finished, left the rest to the men, rushed from the field to the kitchen to get the makings of her dinner and by the time I arrived back at her house in town she was noticeably weaker. Where had this weakness come from?
She was trying to text on the home phone. I took it out of her hand and gave her the cell phone. Tell Danielle I can hear her tapping, she said. Tell her I am coming.
Danielle died maybe thirty years ago I think. This old lady was her caregiver. Danielle would tap her fingernails on the bedside table when she needed her carer to come.
I’ll go tell her, I say. I’ll see what she wants.
I feel like a night moth trapped in a moving car in daylight - flapping at this problem. Wanting to write it out. Why is she so weak all of a sudden. When did this confusion begin. Certainly with the latest stroke.
And it has only increased overnight.
She is back in bed, and now I sit at the kitchen table again, after a night of really heavy lifting and try to take stock.
What changed -the medication was changed when we visited the doctor yesterday. They increased the BP medicine. They told me the adjustment period would have her tired and maybe nauseous.
But this tired? This weak?
Thursday Mid-Morning
We are in the ER now. My patient had a nose bleed while I was writing at the kitchen table. This is not unusual, we live on the prairies - we get bloody noses. But this one was different. The Matriarch is on a short course of blood thinners after the latest stroke so a nose bleed has turned into a major event. The bedroom looks like a crime scene, she bled for a long time - the blood unable to clot because of the blood thinners they have her on.
I decided to drive her into the ER. I call out the her granddaughter who we call the Night Nurse to help.
So we dealt with all that going through pages of paper towels and cold cloths and ice packs until the bleeding stopped and she decided she was strong enough to get up. But almost immediately she collapsed, hard (I called out to my night minder to call an ambulance) then she went tacky, febrile and grey, then unresponsive- I put my mouth close to her ear and called to her, she came back hard, rose up like a ghoul, a huge woop of air then proceeded to vomit blood a lot of blood, more than I ever want to see again in my life. I grabbed the trash can to catch it. The night nurse handed me the phone to answer the dispatchers innane questions - the dispatcher was apologetic- I am sorry I have to ask. I hold my old friends hot wet forehead in the palm of my hand as she vomits dark blood, the phone tucked into my shoulder, as my elders condition rapidly deteriorates - her forehead turns cold, her whole old worn out body was focused on breathing then that stopped too, again, I had my fingers on her wrist and literally felt her heart stop. The artery under my fingers went soft and still. I won't go into details but I got her breathing back again and then I had a hall way full of first responders. She held on. Speaking a little. Fading again. Then the ambulance team crowded in. I had two teams.Altogether there were 6 tall healthy highly trained medical professionals and a gurney. The hall was packed. I had dropped the phone, the blood filled trash can was taken from me and I just held her there.
Over the years of caring for her I have got to know a few of the local rapid response team - we have danced this dance before but never this bad. Never this awful. They gave me wipes then gloves and I call out my observations, then my actions and her responses, all in chronological order, the tech writing fast at her clipboard, my own team mate brings my book and I hand them her drugs list, I answer each question in a clear strong voice. I know what they want. They accept me as part of the team as they circle my elderly charge.
Taking vitals - setting up a drip, bringing her back.
All caregivers do this at some time or the other. All of us have to deal with clear life and death decisions. All of us feel the weight of it. All of us deal with calling 911 and the weight of that decision.
Thank goodness I had got up to write earlier or I would not have seen the bleeding and at least I was dressed. No shoes. But dressed. Weird how we are grateful for small stuff amidst that knife edge moment.
Last time I called them I was in my cat nightie. Not my best.
Did you give her her meds this morning, the woman with a clipboard taking the notes, asked me. Well, I said, her bloody nose was not clotting because of the blood thinners there was too much blood and her blood pressure bottomed out to the point of unconsciousness just before she vomited, twice, so no I did not to give her meds.
Lucky. Said the tech.
I raise my eyebrow and we exchange a look. Indeed.
My old person moaned, she was still leaning right into my side. Heavy. I still held her. Her head wet with clammy sweat. This was not just an old person this is a real person. My old person. I had whipped a chair under her bum as she collapsed so her head was leaning into my hip, her fingers pulling at my knee. My arm was around her head holding her upright as they worked on her.
I’ve got you. I said. I’m right here.
Stop tapping on me, she said.
I need to tell you though that I am not prone to hysterics. I go very cool and quite calculated in a crisis. I take mental notes. I give quick strong directions. I think way ahead. I do three things at once. I answer every question fired at me quickly without embellishment and take considered steps towards a resolution of the episode.
Our night nurse the granddaughter was right with me the whole way. I am terse and fast but she gets it.
But the tapping. The tapping of the fingernails. I felt a chill run through her. I felt it too.
Once my old lady was strapped into the gurney, her hands folded still into her lap like soft forgotten birds, I let her go and moved with the response team. My night nurse handed me a bag packed for her and ready to go. I cast about for my jandals and throw last instructions to her family; apologizing for leaving them with such a mess. One of the ambulance team brushed his arm against mine - let’s go, he said. One of the first responders said do you have something to change into? I looked down - I was covered in blood. I pulled my arms in and yanked the t shirt off my body, holding it out from my face as I flipped it up over my head. Dropped it in with the bloody linen and darted into the spare room, grabbed another top from my bag, pulling it over my head as I walked to the front door.
Taking my hand at the door the tech walked me past my dear old friend, her face slack and grey, being loaded in to the back of the ambulance. She opened the passenger door and handed me up into the ambulance - her hand resting in mine for a moment longer than necessary, giving a little squeeze, you did good, she said. The tall ambulance driver took over, shut the door, walked around the ambulance. He climbed in his side saying “ let me know if you want to train, I would have you on my team anytime”. That smallest and most beautiful of comforts. A person who saw the real person in amongst all that blood and shit.
But he must have seen something else on my face. Shock maybe - fear certainly. I was already second guessing every decision I had made in the last 12 hours. What led us to the horror of blood.
The motor starts up and the lights begin to flash.
Betty Davis said getting old ain’t for cissies or something like that, I said. I lay my head on the window. Yeah, he said - flicking on the hazards. She was not wrong.
Once we were settled into the ride and out on the highway. I said. When you put the patient on the drip you should hook up the caregivers and hydrate us too. With coffee preferably. He laughed.
He was not a talkative man that ambulance driver. Tall in this large cab. Good looking in a familiar kind of way. It was pouring down rain. A cocooning rain. A rain that settled me as I relinquished control. Raining cats and dogs as my own grandmother would have said. Though I never understood that expression. He drove at speed, my ambulance man, but with care. His hands confident and sure on the wheel. We proceeded to the highway through the gathering gloom of morning in a kind of comfortable strong silence. I could hear the murmur from the back of the ambulance but I did not hear my mother in laws voice.
I have never been in an ambulance, I said after a while, by now we soared along the highway through the sodden landscape of abandoned fields. It is harvest time and the monster machines are standing cold and forlorn in the open wet fields, waiting for the rain to stop. I never even go to doctors, I say. Not for over thirty years, I say to myself. I am my own experiment.
He took his eyes off the road and said adamantly maybe a little too adamantly Don’t say that. You should at least do your yearly check ups. People need you. His words were fast and strident. Almost over the line. I laugh out loud then he turns his face directly to me - catching my eye for that moment and I feel bad.
You know how sometimes you connect absolutely and truly with a stranger.
After a while he said - you always were a bit of a rebel.
Did you know me? I said. I went to school here for a year in the 70’s - more people remember me than I remember them.
He just smiled. Nodded. Forty minutes to destination, he called back. His voice professional.
I thought about who he might be for a while. I will ask later I think. I am too tired, now. I drift.
Oh, wait I say. Once. I was in an ambulance, once. But it was a transport - I smashed my face and broke my jaw in a car accident when I was really tiny- a bad car accident - I flew through the windscreen, bounced off the road and rolled into a ditch and the ambulance crew did not know I was there. So they took the other kids and my mum and dad and left without me.
What happened, he said.
Passer by found me, and took me to a little country hospital, I said. Then a couple of days later my uncle tracked me down and I got to ride in the ambulance to the hospital that had my family. It’s a funny story, I say. But not for today.
He nodded. Then told me about the three times he had ridden in an ambulance as a kid.
It was quiet in the back.
Thursday Lunch-Time
It is later now. We are still in the ER. My elder has gone through a myriad of tests. Her eyes firmly closed the entire time. Her querulous voice calling out to me. Are you behind me, she calls. Yes. I say, I am always behind you. I’ve got you.
They ask her what my name is - she can’t remember. The handmaiden, she says. She remembers the month though not the year.
Thursday Early Afternoon
Waiting for the results of the endoscopy.
Thursday Late Afternoon
The family are in her room in the hospital. She is stable now.
I am in the corridor with her doctor and nurse and my notes. Piecing together why she was vomiting so much blood. Where it came from other than the nose bleed. Why she lost consciousness. I will tell you why I say - one doctor who has never even met her before, prescribed an increase in her BP meds, the fall out from that- the weakness and nausea - masked another change. I missed signs. The blood thinners exacerbated an ordinary bloody nose. We see a lot of them at harvest time said a local doctor.
I think she swallowed a whole lot of blood before I got her sat up. I said.
Then her blood pressure bottomed out before vomiting, her nurse added. I nod. If she had taken her Blood pressure meds that would have been very bad.
Because I was writing at the kitchen table, I said. I did not see the bleeding start.
You could not have known, they said.
Friday afternoon
It is Friday now and I have brought her home. The doctors have reconsidered her drug regime after I said I refused to give her blood thinners anymore and would take her blood pressure daily to create a fuller picture. I have thrown out a bunch of pills. She is fed and in bed with her night nurse across the hall.
Her blood count is not quite right yet, but we will do more bloods on Monday.
I am back at the farmhouse 6 minutes away and ready for my own bed.
My bag is packed in case of another emergency. My head aches. Too tired to eat now. Maybe tomorrow.
Saturday Morning - early.
It is Saturday morning now. Soon I will drive back into town. Chores first. Her son is on the early shift.
Do you have caregivers in your family? Go give them a hug from me. Kiss them on each cheek hard, or straight on the lips if they say that’s ok, and say thank you.
Tell them they are our unsung heroes. Our invisible invincible army who usher our precious elders across the bridge.
Tell them to get in touch with me. We need to support each other.
Build a team around the caregivers in your family. They need you.
Cecilia
Below you will find a couple of the stories I have referenced here.
The story about my first ambulance ride:
Looking down from the clouds.
PS The first person I was ever a caregiver for was my own mother, she died when I was in my mid-twenties. She would kiss me in the middle of my forehead every night, as she thanked me for the day. But that, as they say, is another story.
Cecilia
Getting old ain't for Cissies I say to the ambulance driver.