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”
I debated on wether or not I wanted to read this as I knew I would cry. I lost my father just over a year ago now and it still feels like a bad dream I can not wake from. We didn’t have a great relationship when I was a child but he became my person as an adult. He was truly my best friend. He was a planner and in some way had been preparing me my whole life for his departure in some way. He left me with 10 pages of instructions on what to do with everything except the pain and loss. So I did what I knew how to do and followed his guidance and did what he thought best for my son and I. I don’t think he knew he could never really prepare me for this kind of loss….
I didn’t actual get to be by my mother side when she died. But I was her care giver. Our roles had turned. She went when we were all asleep. I found her in the morning. I think back on all the memories, I remember sobbing on my own mothers lap as you did. She stocked my hair. In her whisper she tell me it was going to be alright. I remember our last moments before I helped her to bed. I gave her the biggest hug of all times. After she told me not to be mad at her if she died. It’s almost like she knew it was her time she was ready to go. Of course I didn’t pick up on that. I just hugged her tight. She’s been 38 years I’m still getting through the pain I felt when she left me.
We lost my mom 10 years ago. How fortunate we  (a sister and 2 brothers) were to be by her side for the week before and during her transition. During that week (we were able to have her at home) we had many visitors and got to know things about her that we never knew. We had much laughter and tears, told family stories, listened to her favorite hymns  and watched family movies in her room with her, just as if she could respond to us. I was the baby – my oldest brother and I were the hardest, my sister and I are the ones that took care of her and my dad in the end. No regrets. They had made their wonderful known…My husband and I have done the same for our children. To this day, I feel mom gave us the greatest gift- the gift of love and family. Losing a parent is never easy, but I wish everyone could have the experience we did.Â
Thank you for this. My mom passed 10 years ago in July. She had Alzheimer’s disease. I cared for her for 8 years. Some days we had fun. Some days we had fights. Some days she knew me. For the last 2 years, most days she did not. But up until the very end, she knew I was a safe and peaceful presence for her. I watched her die a little bit every day for 8 years, but it did not make the end any easier. As difficult as those last few weeks (and even those 8 years) were, I’m honored to have had the privilege of caring for her and walking with her until the end.Â
Your words brought me to tears because they could have been my words. I sat with both my Dad and my Mom as Death waited for them but I have always struggled with the fact that it was not me with either of them when their journey here on earth ended. My mother was with my father and my sister was with my mother. I was selfish as I was tired and wanted to be home and I found a way at the time to justify my leaving. I wish I had thought more about their needs at the time and not mine.
I lost my mom in August of 2018 at the age of 58 after a 14 month battle against stage IV lung cancer.  I survived the first year,  repeatedly telling myself she was in a better place.   Initially I was relieved.  Relieved she was no longer in pain.  No longer fearing every single phone call and text.  We (my dad,sister, my husband and I)were with her when she passed as well as her oldest sister,  best friend and two of my cousins.  My best friend was in the lobby with my children and my nieces.  She died on purpose.  The people in the hospice encouraged us to let the kids say good bye to her despite the fact they she never wanted them to see her like that.  She got her wish.  As the kids were in the elevator,  she opened her eyes and gasped.  My father made it into the room to be there for her last breath.  The rest of us,  minus the children,  went in seconds after.  It was on her terms and I have comfort in that.  We lost my father in law 16 days later.  About two months I started to unravel.  I still am as I sit here sobbing.  I keep most of my grief to myself,  but I think it’s getting more urgent that I need to get help.  I don’t think I can trick myself into any longer thinking I am ok.
This was a difficult read. My mother just passed last week. I am not grieving, I already did that as her dementia advanced. I am so happy she is with her loved ones. She called out to them so much. Of course, I miss her so much. But now she is with my dad.
I lived with my mom in her later years and am grateful to have been with her when she passed away. It took a very long time for me to do it but per the hospice nurses as well as doctors I was advised to tell her it was OK to go -the absolute hardest and most heartbreaking phrase I have ever and will probably ever speak-I told her how loved she was and that everyone had been here to say goodbye and that it was OK to go now-within 5 minutes she slipped peacefully into never ending sleep and it was the most painful yet peaceful moment I’ve ever experienced. I am honored to have been the one who was there with her in the end and will never forget that moment for as long as I liveÂ
In the last 6 months I lost my biological Father and my Step Father. My biological Father was estranged from our family most of my life.  I was able to sit by his bedside the last 2 days he was alive.  It was as much a comfort to me as to him. My Step Father had cancer and died within 5 months of his diagnosis.  His death was much harder and leaves my Mom a widow. I’m doing all I can to support my Mom and work through my grief as well. It truly is a life altering experience.
I’m sorry you felt you were a bad daughter. You did the best you could at the time. I wish you peace.Â
Thank you for sharing your story.
My mom passed 2 weeks ago today. She had Alzheimers’s and a blood cancer.
She was my best friend, but my single sister lived with her and was her primary caregiver. I was able to spend unlimited time with her the last weeks of her life. I will always treasure that time spent with my mom.
It was not an easy time, but I think my mom knew that her 2 daughters were with her.
I am so glad my mom is in heaven, no longer confused, fearful or in pain.
I still feel numb, I keep waiting for the grief to come, to overwhelm me, but it doesn’t come.
It will.
My mom was the rock of our family. She meant so much to my husband and me, and to our sons.