I sat alone in a quite basement, the sound of Dad’s oxygen machine, rhythmically going in and out, in and out, as I cried, and tried to stuff my feelings beneath the surface.
It didn’t work very well.
In the medical field the roles don’t often converge. Caregivers don’t often become patients, and patients don’t often become hospital staff.
In my home, the roles converge so often, that I have been both caregiver and patient several times.
Both are hard.
It started when I was born, a very sick baby, that was diagnosed as “failure to thrive”, which means “I don’t know what’s wrong with her, and I don’t care. Take her home, so it won’t be my problem any more.”
My mother, thankfully wouldn’t accept that diagnosis, and took me to a series of doctors until I was diagnosed, and eventually treated with surgery.
The daughter whose live a mother saved, grew up to save the mother’s live.
I noticed something was terribly wrong with my mother, when she got lost coming home from the store, which is only 2 blocks away.
Thus began the same desperate search for a doctor to diagnose Mom. By the time she was diagnosed, a year had gone by and she couldn’t get out of bed, role over by herself, or have a conversation beyond bathroom needs.
That winter was a cold winter, but both Mom and I missed it. Homecare people came and went, complaining about the cold as they did, but neither Mom or I noticed it, because she was consumed with illness and I was consumed with getting her better.
Dad, who traveled for work, came by every two weeks for a weekend. Sometimes he’d stay longer and sometimes he wouldn’t.
In the end, he took a leave of absence, and stayed home all of the time.
We finally got a diagnosis and surgery, followed by time in rehab to learn how to walk again.
She was still recovering when she got home.
Just as she got almost completely recovered, I had an allergic reaction to something I didn’t know I was allergic to, and ended up in the ICU. In the ICU I got sepsis and pneumonia and crashed twice. Once on Christmas Day.
It’s been almost 2 and a half years and I still am not fully recovered.
A month after I got home from the hospital, Dad got sick, and ended up in the hospital. Thus began a two year battle with his health.
He is now dying.
There is a hospital bed, in the living room. It mostly likely will be the bed he dies in. There is an exercise bike in the office, making it very hard to write. Right now, I’m on my bedroom floor, surrounded by both clean clothes that haven’t been folded yet and dirty clothes that haven’t been washed yet.
The basement is a huge storage room, where everything that can’t fit up here anymore has ended up piled up. It used to be a furnished basement, but as our family gets mired more deeply into Dad’s illness, the basement gets more and more stuff, to make way for new things like hospital beds, and bath chairs, and medical supplies upstairs.
Just as our house is in disarray, I feel like my life is in disarray. Because we are in the middle of a pandemic, Dad’s care has fallen on us, and us alone. Family can’t come over, although slowly we are breaking the rules more and more, and maybe they will end up completely broken. I don’t know.
I haven’t had a chance to emotionally heal from any of this. One thing happens, so suddenly that the emotional healing from the last thing hasn’t been completed. Wound after wound piles onto my being, creating guilt that I am inside yelling “what about me”, as my father lays dying in the living room.
That is what live in like for your patients and their families.
Before they even got to the ICU they may have had problems caused by prolonged illnesses, or things completely unrelated to medicine.
And then the ICU brings with it all the things I’ve described in this blog under the “chapters” tab and the other entries. For the family it brings fear of death and the unknown.
It can be pain added to already broken people.
If Dad ends up in palliative care or in the ICU, I will already be broken before he gets there, because right now I am very broken. I cried much of yesterday, and today seems like another day of crying. My eyes are swollen, I haven’t bathed in several days, the house is a mess, and I’ve been displaced in my own house. I don’t know when it will ever end, because even when it does end with Dad’s eventual death, my pain won’t end. It will only get worse.
Please see your patients and their families as potentially broken people? Don’t judge their actions as people who are completely in control of their lives, actions and emotions?
For you, each day in the ICU is a completely normal day. For your patients and their families it could be the worst day of their lives.
If they need things repeated, if they seem in a fog, if they snap at you, if they seem just “off”, it is because they are under stress. They could even be in shock.
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