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.
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.
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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797 comments on “Caring for a Dying Parent In Their Last Days – a Personal Story”
Well written. Thank you for sharing. I just lost my dad Jan 2023 after his battle with cancer, he was 63. I took care of him the last two years as my mom died in 2021 (58 years old) to a different cancer. It’s been the worse 3 years of my life. It’s been so heartbreaking. I have 3 young children and I grieve the memories they won’t get to make with them. I miss my parents so much.
My mom died 5 years ago from lung cancer. I was her caregiver. My siblings wouldn’t help me. That really hurt me. My mom was best friends. We did everything together. She died in the hospital. I couldn’t give her the help she needed. I feel so guilty she wanted to come home. I stayed with her until day 5. I came home to get some rest and take a shower and she passed the next morning at 8:30 am. I feel her with me everyday. I am so depressed that I wasn’t with her them final moments. I feel that’s why she passed when I wasn’t there because she knew I couldn’t handle it. I go see her all the time at the cemetery so I can talk to her. I love and miss her so much.
My name is Jill and I lost my mom too. She was my best friend, always my 1st call, the lose of that is something I still can’t really believe. 9 years later I still go with the flow and feel a strong void. I was lucky to be with her and I remember studying her too. 1 regret I had is sometimes i was too concerned about tht hospice workers and making sure they didn’t need a water or anything. i wish i would have focused more on my mom. She meant tht world to me and I couldn’t fathom life without her. I’m stronger than i ever knew I was. She told me she would visit me everyday. I asked her how? She disnt know how but said she would. Her dad died 30 years prior and I said, “does your dad visit you?” I could see she was stumped but just promised she would. I feel good knowing that was her intention. Bless you!
I am living this right now. With just a few exceptions I could have written this.
This article is so well written and filled with good advice.
I’m walking my mom “home.” And it is hard work.
Connie I as well am living this right now. The tiredness and being overwelmed somedays is tough beyond words, but we must carry on with some normalcy is our lives to try to ease the stress and hurting inside.
My mother was strong, she was stubborn as hell but she was my mom. We were each other’s rocks being that I was the only child of hers over 18. I was living both our dreams of being in the Navy, we went through hell and back together. An as my dad called and told me the hospice nurse said it would be soon I flew home with my family. I spent the last week of my mother’s life with her, changing her diapers, giving her sponge baths when the nurse wasn’t there and making her last couple of meals until she couldn’t eat anymore. I gave her her pain meds to ease the pain of cancer and painted her nails as I was the only one she would allow to paint them. It was 4am and I woke from a deep sleep and couldn’t breathe, I ran to her room and saw she struggled to breathe on her own. I stayed with her until I didn’t hear the breaths anymore and checked her pulse to call her time of death. I wrapped a scarf around her head for the rigamortous and My husband took our kids and my younger siblings to get breakfast while my dad and I waited on the morgue to come get her. Even though she was getting cremated I sat and did her makeup to make her look glamorous one last time. It was hard but as a nurse my mother taught me and prepared me to deal with the worst of times. That was just who she was.
My mom passed away in a hospital on November 19, 2022. I was not with her physically as I was traveling home to be with her when her body gave out. I however was on the phone with her and I talked to her until she took her last breath. I regret not being there but it happened so fast that none of us saw it coming. I think about my life and regrets since she’s been gone and I’m trying my best to be as happy as I can be.
I watched my father pass in Augest all of my siblings were there also it was very hard to do. I don’t regret one moment as they pass through this world knowing they are no longer suffering and pain free.
My Mother is in a personal care home – I wish I could bring her home – still employed, house not really safe for a elderly person , husband difficult to live with – you where lucky to be with your mom !
Thank you for this. My mama went into at-home hospice a month ago. I took an unpaid leave from my new teaching job to take care of her. They’re holding my job for me, which is indeed a blessing, but the greater blessing is making sure I honor my mama’s wishes to die at home surrounded with her own things, her pets, and me by her side. Every day she grows weaker. Every breath she takes is more labored. Every word she says is ever more meaningful. We’ve had a good run, she and I, and she is ready to go and God help me, I’m ready to let her go because whatever lies ahead for her is more important than anything or anyone she leaves behind. We’ll meet again, I know, and the years ahead without her stretch before me with longing to be with her again, but I’ve assured her that she did right by me and my brothers, and we’ll be OK. She needs to hear that and know that so she can let go. She’s talking a lot about her daddy these days and I am happy to reassure her that he’s waiting for her on the other side of the veil along with so many who have gone before her and loved her before me.
My mom died when I was just 13 years old, her death experience was due to Stage 4 stomach cancer. The day my dad had told my brothers and I she had cancer, i instantly knew my life was going to change for the worse. Shortly after she found out about her diagnosis, she had a surgery that removed over 50% of her stomach. After 13 days in the intensive care unit and a few hour stay on a step down unit she was home. But, I thought to myself, how long was this at home stay going to be? All this happening during the summer months and being a teenager really ate at me because, i was a teenager and I wanted to hang out with my friends and I wanted to spend time with my mom as well. I spent time with my mom, and went on a beach vacation with her twin sister and my cousins. When I came back from the beach my mom started her chemo and radiation treatments ; my heart then knew it was time for the fight. And that’s what we did. We fought every single day after that first treatment. The sickness kicked in, her hair started to fall out, she was getting skinnier and more tired. One night, my brothers had a friend who my mom absolutely adored over, I remember this night very clearly because, I got to see the “sickness and health” part of my parents’ vows. We were setting out on the patio having a good time and my brothers and said friend decided they wanted to cut their hair, my mom and dad sat and watched them as they shaved their heads. My mom crying says, “I’m next.” She got up sat in the chair and she asked us all to do a swipe, so we did. When we were finished she sat on the patio steps crying and so upset because if you knew my mom you knew that her hair was her EVERYTHING. Her hair was so long and thin and had the absolute perfect amount of small spiral curls to it, the perfect blondish brown color. But, my dad held her, wiped her tears, and kissed her. Shortly after my mom received her wig and it was short but she loved it. She was making biscuits and tomato gravy and she opened the oven to get the biscuits out and she singed her wig. She laughed so hard she cried. That moment their was the first time i had seen my mom smile and I loved it. Shortly after all this, my mom got extremely sick and confused and started having seizures. We took her to the emergency room that night and she spent 9 days in the ICU and then was life lighted to a more equipped hospital. She then spent 10 days in the ICU again and was called home to God. May 2012-January 2013 my mama fought for her life and she never gave up her body did. Here I am 10 years later and finally realizing how much I am of my mother and I could not love it more ❤️
Thank you for sharing your story ❤️