This is a personal story about caring for a dying parent. The death of a parent is inevitable, but we don’t talk about it. So let’s do that. Let’s talk about it.
My name is Sher Bailey and I’m going to share with you what it feels like to care for a dying parent at the end of their life. This will be a painful post to write, and it may be painful for you to read. But it’s an important conversation to have with yourself before it happens. If you’ve already lost a parent, I encourage you to read on and share your personal experiences if you’d like.
Caring for a Dying Parent In Their Last Days
There is no guidebook here. There are no rules a dying parent has to abide by, and none for you either. Death is a very personal experience between the dying and their loved ones. This is my personal experience. I hope you can take something from it that will help when you walk this path.
Before I begin, I want you to know the last thing my mother said to me as she was moving from consciousness to unconsciousness. “I wish I’d been happier.”
Without question, those 5 words are some of the most painful, life-changing things anyone has ever said to me. I hope you’ll remember them, as I do, and take whatever action you need to take in your own life so that they won’t be your last.
Their death process is your experience, too.
Your parent is dying, but as you walk with them you’ll realize it’s almost as much about you as about them. Your parents brought you into this life and so as they leave it, you will undergo a change that gets to the very core of who you are. Be attentive. Listen to their stories. Commit their words to heart.
There will be things your parent says or does during this time that will come out of nowhere and break your heart. It could be a sweet story they remember, or it could be something completely honest and raw, like my Mother’s words. The filters we all try to have as we walk through life don’t matter to the dying. If you’re afraid you’ll forget, write them down.
You become the parent, and they the child.
I took care of her, changed her, bathed her, fed her. I stroked her forehead and calmed her anxiety. I gave her medicine and held bottles of water while she sipped.
The circle of life is never more evident as when you become the one your dying parent looks to for comfort. When they are afraid, you are there to comfort them. You’ll say a lot of things you’re not sure about, but you do the best you can. You can’t get this wrong if your choices come from a place of love.
You’ll find yourself watching them as they sleep.
Mother slept while I sat at her bedside. She liked knowing I was there, I could tell by the look in her eyes. Honestly, I was afraid to move for fear she’d wake up. It was as though I was back at my daughter’s crib in that respect.
Watching her chest move up and down was comforting to me. I wouldn’t have been anywhere else.
Their confusion will be hard.
There were strong meds which caused her confusion, but it was more than that. Mother’s mind was elsewhere. Sometimes she knew where she was, and others she didn’t. I went wherever her mind went. If she was in a garden, I went with her there. If she was talking to my brother who hadn’t yet arrived, I confirmed to her that he was in fact in the house. I never tried to correct her.
Your dying parent will move back and forth between this world and the next.
Dying is work, and Mother had a lot of work to do. I would see and hear her talking to people not meant for my eyes. And then she’d be present with me again, but only for brief interactions.
Sometimes she’d look in a particular part of the room and explain what was there. “There is a pretty lady with lights all around her, ” she told me. “There are lights everywhere!” she said as she waved her arms around to show me how many there were.
It becomes plain to see that a body is only a vessel.
As her body weakened and stopped functioning normally, I had to come to terms with what that looks like. When you sit with your parent as they are preparing for their journey, there are almost imperceivable little changes that happen to their physical body. And then suddenly, you see what’s happened in its entirety and it takes your breath a little.
You may have relationship issues to deal with.
Our dynamic was not good. I was a great disappointment to her, and it was easy for her to tell me so. I remember the last time she sat in her wheelchair. I put my head on her lap and sobbed harder than I’ve ever cried or seen anyone cry.
My sobs were guttural and uncontrollable, and she put her hand on my head to pat it as best she could. In the midst of my anguish, I cried out to her again and again, “I’m so sorry, Mother. I’m so sorry I was a bad daughter.”
I continue to struggle with this, to be honest. I wish I had a checklist of good things I’d done alongside the “bad” things. Truth is it probably wouldn’t matter. When your heart breaks, you can stitch it up. But, the scar will always be there.
When an estranged parent dies, they get to leave the demons that haunted them on Earth behind. Ours stay with us, always at the ready to come out and force remembering.
When your parent is dying, you realize you are not immortal.
I watched death come for her, settle in her room, and wait quietly until she was ready. It didn’t wrestle her life away from her. Sometimes I hoped my death would be like hers. When it got more challenging, I hoped it wouldn’t.
When a parent dies you can’t help but think of your own death someday. You wonder if this is how it will go for you, and what will happen with your own children if you have any. Will they be there with you? What can you do to make it less traumatic for them?
You’ll search for yourself in your dying parent’s face.
That’s what I did. Her nose was my nose. Her smile, crooked on one side so that lipstick never looked quite right, was my smile. Her small hands were my hands, although hers were painfully gnarled by arthritis and were adorned by a single ring she wore on her thumb.
I remembered being in church as a little girl, Mother holding my little fingers in hers as our Southern Baptist preacher railed against the devil from his pulpit. Her nails were always long and manicured and I loved running my fingers across them. I dreamed of the day I’d have long, red nails, too.
The exhaustion will be merciless.
My family and the hospice team were adamant that I eat and sleep, and they told me that as often as they could get the words out. That seemed impossibly ridiculous to me. How could I sleep? What if she looked over at the chair beside her bed and I wasn’t there? Even worse, what if she passed away while I was in bed?
I would tell you not to do what I did, but you will. People will want you to rest, and you should listen to them. But, you won’t. I finally made my husband promise he would sit by her bed, watching her chest rising and falling, so I could take a 3-hour nap. He was under strict instruction to wake me if the slightest thing changed. You should try and do the same.
Be still.
You don’t have to talk if you don’t want to. Your dying parent will feel your spirit beside them and know they are in a safe space and well-loved.
I spent time letting my eyes settle on everything about her. Her face, her smile, the way her hair looked. I knew it would be my last looks, my last chance to see her in life.
Afterward.
I did my best. That’s all I can say. You’ll do your best.
Remember, you were present. You were filled with love. You were patient. Still, it won’t feel like enough.
There is no shortcut to get through this pain. If you can get to a therapist, I encourage you to do it. Lean on your loved ones as much as possible. Accept help.
After two years I can still hear the way she said my name. I worry I won’t be able to hear it forever.
This is the obituary I wrote about my mother after she died. She’d want me to share it. Mother loved being the center of attention. 🙂 I hope you’ll tell me about your mom or dad. I really want to read about your journey.
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812 comments on “Caring for a Dying Parent In Their Last Days – a Personal Story”
My Mom passed this June one of the hardest deaths to deal with for me. I did take good care of her. She taught me that. I miss her so much it physically hurts. Our last conversation was….I laid in bed with her and she looked me right in my eyes. I said Mom I love you and thank you for being such a good Mom. She said I love you more and thank you for being a good daughter. Then we had to give her morphine. She passed a few hours after that. Man I miss her so much.
I lost my mother at 10yrs. old, and my father at 12….i miss them so, and I’m 58 now. But I know God has them, and they are safe and happy. God IS good
By age 33, I’d lost both of my parents. Funny, I’m 39 now and the feeling of being “lost” really doesn’t go away. I tell people I’m an orphan because….I am.
My dad died in 2010 from cancer. So I should have expected it and “at least he was sick”, right? Wrong. I recommend grief counseling because as much as you expect it, wait from the call from hospice in the early morning hours (oh I have an infant at home so I was unable to stay…he wouldn’t have wanted me too anyway) and want relief from their pain for them….you still don’t expect the feeling when it happens. The loss is huge, deep, a big black hole in your heart. I was finding myself inconsolable at the worst possible times..on the train coming home from work, at a red light, often times my husband would come home and I’d be in the fetal position sobbing in my bed. No way to live. Counseling helped. My mom’s passing 3 years later? Very sudden, terrible and on Mothers Day. The walls I built around myself emotionally were indestructible. I feel like there were silent alarms going off in my psyche. My brain just trying to keep me level headed so I didn’t lose my mind. Have you ever had to tell someone they were actively dying? I did. I would play this ICU shit show in my head from beginning to end, guilt ridden on what I could have done differently and that gets you no one where quick, just a lot of sleepless nights. I don’t wish losing a parent on ANY ONE. As unrealistic as it sounds, I pray that people don’t have to deal with the pain I have but it’s life I suppose. hmm and saying that doesn’t help either……
My my Mom passed on my birthday in January 24,2000 from a brain tumor. She had was bed ridden after her second surgery of April 15,1999 so it was long term death and you hate to see your loved one (with left side neglect paralysis) who was so independent being dependent on everyone for EVERYTHING! She was still mentally sharp but didn’t have the left side of her body to cooperate.
We wasn’t always an I love you bunch of people, but once you get a death sentence that kinda changes things! I told my Mom on Thanksgiving night that I would be away for a long weekend but not for her not to worry that I hadn’t forgot about her and that I loved her!(I Worked nights and would go and take care of her when I got off from work, my Aunt would do the afternoon shift, and my sister did the night shift. While we had a friend that lived in the house that did the cooking. My Dad was bipolar but that’s another story!) she replied back “I love you too even though you are a pain in the ass!” I said Momma why do you say that she said “ YOU JUST ARE!” We laughed and said ok I guess you got me on that one.
When I got back from my trip first week of December she was wasn’t responding eating or drinking or having any output so we had to take her back to the hospital and her and I was in the room and a gentleman from hospice came in looking for my Dad wanting to talk to him, I told him that they had stepped out. He ask if me if I knew what hospice did and I said kinda so he elaborates and starts telling me that my Mom needs hospice and that I need to tell her that it’s ok to go and that I’ll be ok without her,And to give an open apology and to ask for one! KEEP IN MIND MY MOM HASN’T BEEN RESPONDING TO US AT ALL VERBALLY OR PHYSICALLY and I’m having this conversation with this man in her room next to her. I told him telling her those things was easier said than done but he said it was important to ease their mind!
So this guy leaves the room and my Mom ask who were you talking to? I was shocked dumbfounded I said do what? She said,that man ..that man that was in here. I said you heard us talking she said yes so I asked her if she knew what hospice was and she said “YES AND SHE WAS READY TO GO“ she asked me to take care of my Dad and I told her I would if he would allow me to help him..I told her if she was ready to go I was ready to let her go and that I loved her and told her I was sorry for not always being appreciative and that I would miss her
Something my sister did that was nice she recorded conversations with her asking her how she came up with our names asking different questions. We did videos of my Dad asking him about dating my Mom telling stories and we played it back at his funeral..
I’ve held both my parents hand as they took their last breath, if you can handle it no loved one should ever have to die alone. I have a friend at work who’s lost both her parents and she asked me do you feel like an orphan? Thank goodness someone else does too.
Im crying my eyes out this is so true ive been in bembo with her im scared to say things im scared to ask cause she gets angry i no this is not herself as we speak shes in hospital with kidney failure again for the 9th time in 2half months i know her time is coming im so scared
It was heart breaking loosing my mother. It was all on me. Others couldn’t handle it. Later I hadn’t done enough. I miss her
Wow,seens like my experience with my mom,she was a potter all my life and her love for creativeness and livin in the moment was her style, but life gets long and she could no longer do want she loved, i watched her chest goin uo and down my life is just a time frame,live all u can tell everyone that u love them every time you see them,she was big on graditude sayin thank you always, askin how are u doin,she passed into heaven and i know she is waiting for me there i have no worries i will hug her again, i see her signs every day that her lov lives on ,mainly in shadows i see the letter A for her name is Audre love u mom!
As I read this I too sit by my Dad’s bedside as we wait for him to leave this life. He too stares at the ceiling and reaches out but is too weak to tell me what he sees, who he sees. It was the most difficult thing to tell him to leave us and to be with his heavenly family.
Thank you for your words, all is so true. I am so afraid to leave his bedside for fear he will die alone. But my family forces me to leave, sleep and eat.
We prayed several weeks ago to save him, we pray now that the end will come soon.
Your words were divinely brought to me at this exact yime.
Thank you for your words!
I went thru this as well, some words that will always remain with me she said was one night as I was preparing to leave her room for the night another sibling had arrived to take over being with her. As I gathered my things I said goodnight to her as I kissed her & asked her if she needed anything before I left her. She with complete clarity reached her hands out to hold my hands and gently whispered just my daughter. Leaving that night was the hardest thing I have ever done. My beautiful Mother passed the next day.
I was with my Mom every day the last 2 mos she was alive. I was with jer the moment she passed and I coulsnt breathe I cried so hard! It was easily the hardest thing I have ever done to date. i wouldnt change it dor the world.