Erin is not her real name. I’ve changed a few things for her privacy. That said, let me bring you to Erin’s house; come with me to sit with her, this woman caught somewhere in between life and death.

We’re going to start by knocking on a door, which as always triggers an absolute cacophony of high-pitched barking from upstairs. Despite my many arrivals, the unseen dogs remain vigilant.

Erin’s son lets us in and we enter through a sort of foyer which is open to the upstairs. Everything is briefly pure audio chaos as the dogs lose their ever-loving minds and then we go through another door into Erin’s living quarters.

She has a lower-level apartment setup in this larger home, it’s the only part of the house I’ve been inside. There is a bedroom with a hospital bed, a bathroom set up for a wheelchair, a kitchenette, and a small living room.

The living room is where we will stay. Erin is in her wheelchair and situated by a couch. Her son chats for a while then heads upstairs; this is the whole reason we’re here, so he can leave for a bit.

Otherwise, he is down here taking care of his mother. All day and all night (he has a monitor by her bedside that pings him if she wakes up), and he’s done it for many years.

We don’t know Erin’s full medical story or anything like that. What we do know is that she has Alzheimer’s and she’s had a debilitating stroke. One of her legs is amputated, there must have been an infection at some point.

Erin sits in her wheelchair and she does not speak. She does not follow us with her eyes, she gazes up and to the right. There are old paintings hung on the wall she is oriented towards, her son tells me she likes looking at them.

We’re here for three hours. Upon trial and error, I have settled on a sort of routine: I watch vintage shows on the TV (Benson, Magnum P.I., Flipper, Leave it to Beaver), occasionally chatting to Erin about random things: “Gosh, I forgot all about the snarky German lady on Benson!” During commercials, I sometimes read poetry to her from my phone, or I just turn down the volume and let the room be … well, it’s never really quiet, there is a radio forever playing classical music and everything upstairs is largely audible in her area, but I let it be as quiet as possible.

I’m not going to lie, these are three long hours. Very occasionally Erin’s eyes close and her face softens into sleep, but mostly she is awake, she is here but not here. Sometimes she grinds her teeth, there is a terrible and helpless squeak of enamel as her jaw works. Sometimes her throat rattles moistly because she cannot clear it, sometimes she coughs a startling choking sort of cough and I say something dumb like, “Oh, I hope that feels better.”

Her hand clenches, she often has a rolled-up washcloth in her palm to protect herself. We will have to replace it many times when it drops. Her hand is like a fragile bird, can you feel the papery softness of her skin when we peel back her fingers? She has such a surprisingly strong grip. Her bones feel so breakable. We have to open her hand like a delicate, resistant flower.

We will gently wipe her face when there is saliva from grinding. We will carefully smooth her hair away from her eyes.

I have to tell you a secret that I am not proud of: I have really struggled with these visits. I have spent time in this room counting the minutes until I could leave. I have been deeply spooked by Erin, by this poor woman who is so damaged it has sometimes been hard for me to see that she is still a person.

This is not how anyone would want to die, and maybe that is what has been so upsetting to me. Or maybe it’s that I have no way of knowing what is happening inside of Erin: the possibility that a non-broken part of her might be trapped in a broken body is almost too much to think about and of course I think about it all the time.

I don’t know if my presence makes any difference whatsoever to Erin. I do know that it makes a difference to her son, though, and that’s what eventually helped me shift my own perspective.

My god, how he loves her. He is so tender with her, his voice and his hands. He has been caring for her in varying capacities for twenty years.

He sometimes sits and chats, and he tells me about her, what she was like before. Erin was one of two women in her medical school. She did two residencies (!), emergency medicine and psychiatry. She was described by a fellow medical student as the most forgiving person he’d ever known; she had been treated very poorly by the male students yet had always taken the high road.

She is so precious to him. She is greatly diminished but she is still his mother, she is still a person. She has medical problems and she requires care. She isn’t scary, she is dying.

Erin has lived 90+ long years and I hope that if there is awareness left in her, that she is forever visiting her favorite memories. I hope she is holding her babies, laughing with friends, treating her patients, walking in a strong and healthy body.

I also hope that you don’t mind coming here, this one time. I wanted you to know about her because she feels so disappeared, but she had a whole life. She’s still here, and we can’t know the why of it, why she has to stay in this suffering body, but she is here and no one is going to leave her to die alone.

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Stacy
Stacy
2 months ago

This is indeed a tough read but I love these stories you post about your work with Hospice patients. I played the role of full time caregiver to a grandma of mine abut 20 year ago, aided by hospice and I will never forget their style and the dignity, and peaceful stillness they brought to us, the patient, in particular, at those moments. That is where I learned that the end of life can be beautiful, if it’s allowed to be. You are truly doing the work of angels and I hope you continue to do it and share the stories. It is weird and uncomfortable but it’s a part of life and we might as well normalize and humanize it.

Amy
Amy
2 months ago

What a beautiful and painful read. But so important. Thank you for sharing the story.

Being asked to consider the questions, the situation, is heart-softening for me.

Suzanne
2 months ago

This is so beautiful and I have tears in my eyes.

Catherine
Catherine
2 months ago

Thanks for sharing that story – your presence (despite your discomfort) must be such a help… And it does lead you – and us – to good hard questions about life… Thank you!

Christine
2 months ago

Thank you. This is beautiful and you are an amazing person.

Anna A
Anna A
2 months ago

This brought me to tears. Your writing continues to be wonderful. End of life can be so very hard and I’m glad Erin is not alone.

Jess
Jess
2 months ago

Thank you. Just… thank you for this visit.

Jill
Jill
2 months ago

I am also crying. My grandmother was in a home for nine years. NINE. YEARS. Seemingly unaware of her surroundings, and that was only after she got too “bad” for in-home care. My other grandmother needed in-home help but mercifully never needed to be in a home. It is such a shocking and sad state to see people like that; women who were always so loving and capable reduced to staring and barely remembering how to speak. I admit I am afraid I will be like that at some point, seeing as both of my grandmothers did, so thank you for being a caregiver, and acknowledging the lives well-lived, and providing the families with badly-needed and sometimes unmanageably-expensive help. Thank you.

barbara
barbara
2 months ago

Beautifully written. Thank you.

Kimberly
Kimberly
2 months ago

Thank you for inviting me in.

Lisa
Lisa
2 months ago

Thank you, Linda. This is beautiful.

Donna
Donna
2 months ago

Oh, Linda….😪❤️

Mary Clare
Mary Clare
2 months ago

Thanks for sharing a little window into Erin. Aging provides a new perspective (for me) on these kinds of illnesses and end of life occurrences. We’re all going to get there someday and its important to shine some light on the topic.

Becky
Becky
2 months ago

I read but almost never comment — I just wanted to say thank you for sharing this beautiful snapshot into your volunteer work. Erin is lucky to have both her son and you to care for her so lovingly.

Stephanie
Stephanie
2 months ago

This story absolutely wrecked me. Thank you for sharing. Just a beautiful, heartbreaking story.

Barbara
Barbara
2 months ago

Thanks for sharing this. I love how you talk about the minutes ticking by, and all the complicated feelings you have while doing it. Also, do you happen to remember the video for Elvis Costello’s song “Veronica”? I used to love it and it reminds me of your Erin.

Erin
Erin
2 months ago

Thank you for this beautiful story. Like many others, I am also in tears. My name is Erin, and my mom has been suffering from early onset dementia for 15 years. Your story touched my heart deeply.

Alexa
Alexa
2 months ago

This was beautiful. Thank you for sharing.

Alexa
Alexa
2 months ago

what a stunning piece of writing. Thank you.

Lisa
Lisa
2 months ago

Beautiful essay. You have inspired me to inquire about hospice volunteer opportunities in my city – so thank you.

Laura
Laura
2 months ago

So,so sad and yet you made it so beautiful too.

Lisa
2 months ago

So beautiful. What you are doing is so meaningful- never doubt it. My dad became critically ill in February and the nurses allowed me to come join my mother during the last hour of his life. Though he was unresponsive I know he knew I was there. I know he waited to go until I got there so Mom would not be alone. He slipped away silently as Mom and I sat there talking. It was such a profound moment that I am still processing it months later. There is so much about life that is mysterious. Thanks for sharing this.

Pat Birnie
Pat Birnie
2 months ago

Thank you for sharing her story and for being someone who will sit for these hours as painful as it is. I really admire you for this.

Elizabeth_K
Elizabeth_K
2 months ago

Sometimes … I struggle with this … as it is not her deep and wonderful son and deep and wonderful life; but my own mom, who was not as wonderful in my lifetime, and who I struggle to love, and who is disappearing mentally, but SUPER strong physically. And I just … struggle … to love her as we all should be loved. So thank you for this reality, thank you for this amazing son, and … thank you for knowing sometimes we all fall short (me, I’m talking about me here). You are doing wonderful work, even just sitting there.

Sally
Sally
2 months ago

Beautifully written – this evokes some strong feelings, as it should. It also begs the, exceptionally convoluted, question of whether we are doing anything like the right thing in our treatment of our elderly…

Jenni
Jenni
2 months ago

In this already shit-tastic year, I lost my husband to a brain tumor (after 20 years of being his caregiver), and had a stroke myself (at age 41 – zero risk factors). I can tell you, that while not trapped inside – I didn’t have cognitive complications, only physical – I was SO SO SO SO appreciative of every person that crossed my path that treated me like ME. Not the wife of, or the widow, or the patient, or the person they were helping to wipe their ass. Those that talked to me about MY life…my kids, my work, my interests. I’m fully recovered; however, those visitors and medical professionals have a giant piece of real estate in my heart.

You just being there, both for her AND for her son/caregiver…good, good work.

Jessica
Jessica
7 days ago
Reply to  Jenni

Thank you for sharing your experience. I spent 9 years with my beloved mother as she tried to recover from a massive stroke. And the people who knew her and loved her and respected her were the greatest treasure imaginable. Hearing your perspective helps me.

Cara
Cara
2 months ago

I have learned that sometimes the most important job is to hold space and *see* the other person. I am not very good at sitting quietly, so in those situations I bring knitting. With my hands busy, I find I can stay present.

elyce
elyce
2 months ago

Thank you for continuing to share your writing and experiences with us. This one hit hard in the best way.

Leona
Leona
2 months ago

Thank you so much for this post. I didn’t mind coming at all, helping the elderly sometimes doesn’t feel rewarding when you are the one doing it. You have made such a difference though, that man will be forever grateful to you. I used to volunteer with helping elderly people and you have inspired me to sign up again.

Nine
Nine
2 months ago

I am thankful for you. <3

Also: I have no way of knowing when I saved this link but I found it again today and it is 1000% true and worth knowing again, and again.

https://medium.com/the-archipelago/not-everyone-feels-this-way-7e21574a2dfd

trackback
2 months ago

pacanele online gratis

All & Sundry

Erys
Erys
1 month ago

Compelling and deeply moving. Timely and timeless. Thank you for sharing your work.

nerr
nerr
1 month ago

Thank you. This is beautiful and i think we need to know this. this is about us in the end too.

Abby
Abby
1 month ago

Oh, wow, Linda, this is beautifully written and very moving. Thank you for this window into Erin’s world.

Rachel Pomeroy
Rachel Pomeroy
12 days ago

So very profound and well written. Some days like today I sit and catch up on your writing and I can go from crying from laughter to crying from sheer awe in the beauty of what you wrote from one entry to the next. Thank you.