The Caregiver Blues: Living in Limbo

Loving and Waiting with my Mom

As my sunflower still hangs on to life. So does my Mom. We all will get old someday and we all need to have the dignity and a pain-free ending to our lives. There are so many challenges in the medical world and I’ve experienced them all too often; with my daughter, now with my mom, and with my dad several years ago.

Here is a poem that I wrote one day, about a month ago while in the throes of feeling deep caregiver blues. This is what came to me. I wrote it in a stream of consciousness. It is awfully personal, but I felt like I should post it anyway.

Maybe it will help others in similar situations.

Let’s all shower my mom with lots of healing love and prayers.

The Caregiver Blues: Living  in Limbo

(written on October 13, 2024)


She’s calling the shots. She’s holding the reins, hoping to keep away the pain.

She’s in the drivers seat.

She’s got the wheel.
She’s  steering the ship.
She’s running the show, despite what she doesn’t know.

She woke up one day in writhing pain.
“No, I won’t go to the hospital, I will not concede. To stay in my home is my mission. It’s all that I need.”

She held on tighter to the wheel.
She strengthened her grip. For four whole days, she would not take that dreaded trip.

Her adult children gently nudged, then hounded, and scolded.
She would not be pushed.
She would not be told what to do, no matter how much she endured of her childrens’ talking to.

She had raised four children, lived through a divorce. She earned the right to do what she wanted to.

She made her own decisions. She was not giving in.

She loosened her grip. Her denial unfurled.
Too sick to stay home, she called the ambulance herself.

She was met by kind faces, a stretcher and needles; ones to take blood and ones to give fluids.

She arrived at the hospital to exams, x-rays, cat scans, and ultrasounds. She was told she had back fractures, edema, and pleural effusions.

She was given Lasix to drain fluid and Oxy for pain.

You can stay here and rest a kind nurse declared. She waited for over 24 hours in the ER till they found her a room.

Her grown children accompanied her from home to ER.
She woke up alone. Her solo journey begun.

The days became longer.
The silence became quieter, only broken by cries and coughs from roommates and  beeping machines.

She fumbled for the remote hidden under the sheets, just to hear some sounds and voices from the TV.

She held on very tight to her small black purse and the iPhone with her four children’s phone numbers programed in- her only life line to the outside world.

Days, weeks, and months have passed; one month at the hospital, two months in the rehab.

Time has slowed to a miserable enduring halt.
Time is standing still and time is slipping by.

She dreams of going back, back to the way life used to be before she took this journey into a life of misery.

She’s waiting to go home. She wants to leave.

Back at her condo, life was okay. She could sit on her couch, make a few calls each day.
She could walk with her walker to heat up some food, pour a drink for herself, wash up at the sink.

She yearns to go back to life in her home, to life from her couch, to life on the phone, where she awaited her children and resturant dinners they would bring.

Her name is Midge. She is 91 years old.

She has lived a lifetime of moments, times that felt like heaven and times that felt like hell.

She is waiting to get better or she is waiting to die.

She wants to go home.

In rehab, she’s working hard to sit, stand up, and walk with her walker so she can go home, to more life ahead or to go home to die.

She is holding onto the reigns, hanging onto to wheel.
She is of sound mind. She can ask for what she needs.

She calls her children on the iPhone when she wants to talk.

She keeps the ringer silent, so her children must wait for her to call.

She is calling the shots from her inpatient bed. She is holding onto the wheel, holding onto the reins.

She’s running the show, despite what she doesn't know.
She is in the driver’s seat with no place to go.

Midge, Mom, Ga Ga, Gram is waiting to live or waiting to die.
She does not know, which it will be.

My Mom is in limbo. I stay by her side.

I bring her key lime pie, clean clothes, Good and Plenty, and tales to entertain.

On her good days I watched her sit up, and walk with PT.

I watch her become bedridden and in greater pain. She has more spontaneous back fractures, we are told, and the edema came back.

I watch her grimace in pain.

I ask her what she wants.
One day she says, “I think I could go home.” On another day she says, “I want to go to hospice.”

Every day she says, “I don’t want to go to the other side.” She means the nursing home side of rehab.

She asks why God has not taken her yet. “I want to go to heaven. That’s the ‘other side’ I will go to,” she says!

She hoped she would die at home in her sleep. That’s what she ordered up for her end of life.

She has no health care proxy.
I live out of state, so my siblings get first calls.

I am desperate to help her.
Midge is holding onto the reins, holding onto the wheel.

She will not give up being in the drivers seat, though she does not know, where she will go.

I want to take the reins gently from her, and help her to a peaceful and pain free place.

I want to call Hospice or get her better care. I am helplessly looking on. My hands are tied.

She is holding on tight to control.
It is her life after all. She is of sound mind.

I pray, wait, agonize, and worry.

All I can do is sit and wait for her phone  calls, sit by her side, be present to love her, holding deep destress inside.

We are living and waiting in limbo.

We are living in a medical world with scenarios of kindness and scenarios of neglect.

All I can do is sing this caregiver blues.

Addendum:

A month ago (right after I wrote this poem) my mom was transferred from rehab to a hospital due to lack of pain management, still with inconsistent medical care. When in the hospital, my Mom finally allowed me to do a healthcare proxy and a POA for her so that I could get her out of the hospital. Mom was inpatient at medical facilities for almost 4 months.

We took her home to Hospice on November 17.  Midge is now surrounded by family and the love that she needs. We are now keeping her out of pain.  We are all there for our Mom, hoping to give her the dignity and love she deserves at the end of her life.

The painting I made for my Mom, hanging now in her ‘ hospice at home’ room.

Please excuse any typos! Sent from my iPhone