The Reluctant Caretaker   

The Portal, watercolor on paper by Marcella Simon


For two years now, each morning I wake up, struggle to open my eyes that are filled with crusty residue, and slowly make my way down the stairs. There I cautiously peek into my dining room, which has now become a hospital room for my husband who has been diagnosed with terminal Parkinson’s disease. As I peek in, I’m not sure if I’m glad to see he is still breathing or disappointed that he has not yet found some peace.


This time in the morning is his best sleeping time; therefore, it is also the best time for me. It is a small respite from the endless bathroom journeys each day presents. His pants go down, his pants go up. Are they soiled? Are clean pants needed? Did the sheets get soiled? They too will have to be laundered again.

And of course, there is medication to give him: carbide, amlodipine, Lisinopril, and more. I have become a pharmacist. There are days when I panic. Did I give him his meds today? Were they the correct pills in the right amounts?  Good Lord, I don’t remember. Oh well, I’ll try to do a better job tomorrow.

His false teeth need to be cleaned. Polident—where did I put it? I clean the dentures and return them to his mouth. I have become a dentist.

Each morning I put milk and banana (I hate bananas) into the blender, adding some sugar and vanilla to try and make the concoction taste better. He needs his protein. What can I make for lunch? I have become his chef.

Will I have to change the sheets again today? Please no…I am so tired of laundry. But for now, he is sleeping soundly, probably till noon or so.  Ahh, time for me: a cup of tea, read the paper, call a friend.

I don’t remember ever entertaining the idea that one day I would end up being his caretaker. We married when I was twenty and he was almost thirty. Did I not realize I might end up taking care of him? The words better or worse: Did I not remember saying them? At twenty you don’t understand what they mean.

Fifty-four years of marriage, three children. I thought I had done my share. Am I the shallowest person on the planet? Too selfish, self-centered?  Maybe so, but I will still do what needs to be done for this sweet man, to keep him alive, to keep him comfortable.

My life has changed dramatically. My bathroom tub now has a chair sitting in it and the toilet seat has been replaced with one with bars on each side to make it safer for him to use.

Some days I look at him and wonder who this man is. So frail, so dependent on me, to walk, to eat, to live. A man who once was such a positive influence in his children’s lives. He was always there for them, so independent, healthy, and vital. Where did he go?

  I can’t even recall what he used to look like when we were young and active. Seems like centuries ago. This sweet old man thanks me at least a hundred times a day for every small thing I do for him.

I never saw myself as a person who could or would ever take care of someone else. I knew there were some who loved taking care of people, but surely I was not one of them.

I cringed at the thought of bowel functions. I was totally embarrassed by nakedness. And never ever did I want to see any old man’s genitalia!! But look at me now. I clean him, bathe him, dress him, and change his soiled Depends, and each time I try to ease his embarrassment with a joke and a kiss on the cheek

I have found in myself a person I never knew existed. But there are days when I feel so trapped, so angry that I have this responsibility. Should I consider a nursing home?

How could I do that to him?

He has always expressed how he wanted nothing more than to die in his own home, the one where he finally paid off the mortgage, the one he was proud of and comfortable in.

 He had always been a saver through the years, buying bonds every payday and putting a few bucks away for our retirement and for our children to inherit. I knew a nursing home would wipe us out financially and leave nothing for my children, while not giving him the care that I could.

Ironic how the government tells us to save our money for our retirement and then penalizes those who have a few bucks in the bank by taxing it again and again and providing no financial help for nursing home care.

The system has it so you hope that this person that you love so much dies before every drop of your savings ends up in the coffers of a nursing home.

Well, the day had finally come when I was told by hospice that he would be dying soon. The hospice people call it transitioning, but dying is what it is. I was told to stop all food and drink (one of the hardest things anyone has to do) so that his body could dehydrate naturally and he would have a natural and peaceful death. In truth, to watch him over the next seven to eight days with labored breathing, turning a foreboding shade of gray, might be considered natural to some, but I would never consider it again for someone I cared about.

Day and night I hovered over him, wiping his face with a cool cloth and swabbing his dry lips with a wet sponge. And I prayed to a God I do not believe in to please take him and let him be in peace.

Finally, on the eighth day he died, and instead of grief, all I felt was relief.

The funeral director came by and took him away.

The hospice people came and took away the hospital bed

The health care people came and took away the wheel chair, the commode, and whatever else belonged to them.

All gone in an afternoon as though it had never happened.



Editor’s note: The Institute on Aging estimates that 75 percent of caregivers are women.

Author's Comment

I wrote this daily diary almost eight years ago and until now I just couldn’t read it. But time heals and I thought it would help the many women and men who are now going through the same thing: they are not alone, and life propels you forward.


Phyllis Todisco is a mother of three and grandmother to four who lives in the seaside town of Winthrop, MA. She has been writing poetry and prose for as long as she can remember. She gets most of her material from her own life experiences.

Marcella Peralta Simon is a retired Latinx grandmother, splitting her time between Cambridge, UK, and Kissimmee, Florida. She has been a diplomat, university professor, and instructional designer. She writes poetry and short fiction. Her artwork has been featured in Smoky Blue Literary and Arts Magazine, Beyond Words Literary Magazine, Tofu Ink Arts Press, Persimmon Tree, and The Acentos Review.


  1. Phyllis Todisco writes with the grace of a heart that knows love is honest, love is truthful, love is gritty. I am stunned by the beauty of this piece. Thank you, Phyllis Todisco, for the gift of your words.

  2. The power of this piece is in its honesty, its focus on the challenging particulars of care, and the love that shines through. Phyllis Todesco was a brave woman who didn’t know she had it in her until she had to find it

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