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 didn’t know how sick she actually was. She had been in the hospital for 4 days, and that’s when we found out she may have cancer in her lungs. Over the course of the next couple days, they discovered more cancer in her liver.
On day 7 of her hospital stay, she passed very early in the morning. My Dad and I were the only people by her bedside, and I know she wouldn’t have wanted it any other way.
It has now been 1 year and almost 1 month since she passed away. Nothing could’ve ever prepared me for losing her, so quickly, and unexpectedly. However, I will keep her memories vibrant in my mind, her bible with notes living in my heart, and her love with me wherever I go.
My sweet mother passed from this earth on July 9, 2019. Hardest day of my life. I am only 36 with 3 young children. My mother was my best friend and my go to for everything. I was with her as she took her last breaths. She passed from chemo induced cardiomyopathy. My heart is shattered and I will never be the same. I miss her so much. Thank you for the great article.
Thank you for posting this. I was at my moms bedside for 7 weeks while the cancer took her from us. I never left her side unless my brother was there in my place. My mom told me to not leave her alone so I respected her wish. My mom told me she was ready to go as the days got shorter , that she had a good life and told me I was a good daugjter. These are words i will never.forget. My mom was only 59 when she lost her battle with cancer. I miss her every single day.
Thankyou for this.
2 years this month I lost my incredible mum and I am helping nurse, at the end of her life, my Mum in Law.
2 things, it was obvious that my mum was visiting the spirit realm as she kept seeing her mum and shouting for her….
also, I thought I was being morbid to be consumed with my mortality and how many years I have left now I’m the matriarch…..Thankyou for pointing out the first and making me realise that my second point is normal. Oh, yes, we are exhausted…. ❤️
Thank you so much for writing and sharing this. As I sit here with tears streaming down my face because I too sat in that chair beside my mom. Making sure she was still breathing. Remembering the last time she was lucent and took hold of my face and told me how very proud she was of me and how much she loved me. She asked “you going to be ok?” My answer yes….but I knew it was going to be NO. I asked her the same..”you going to be ok?” She smiled and said yes even though I knew her heart was breaking to leave us behind. I didn’t know how much it was going to hurt at the time or how I would long for her every day!! Even after 10 years it’s still so fresh and I still long for her. Therapist…YES!!! I did that and it helped with the impact and loss. I highly recommend it!! You will never get over losing your parents! Never! But I am so grateful for the memories even in the dying!!! Thank you again for taking the time to write this. My hope is it will allow others who still have their parents to make beautiful memories.
God Bless!
Janet
Thanks for sharing this. My mother died this past January after a 7 year battle with cancer. She died after 6 days of being in hospice which she went into rather suddenly. I took care of her that entire time along with my father & sister. I also gave her the medications and helped her to the bathroom. A lot of the way you described the experience was similar for me. I was not estranged from her. She loved me dearly and had confided in me her deepest concerns.
She was honest with me about her fears. She’d told me what she wanted. We’d said all we needed to say. Still one is never prepared for such a trying time.
8 Months later I still can’t believe she’s actually gone. I only had one moment of lucidity with her during the 6 days. She looked directly at me & smiled and said, “Aaahh, now I see where I need to go.” I knew she meant heaven in that moment. I’m certain she’s there & in peace. That brings me peace but I miss her dearly. Thanks for sharing & encouraging others to share.
Thank you so much for this. I am a caregiver for my terminal father. Was told 2 months ago he has 6 months. Maybe a year left with us. I took care of my Mom before she passed and made her a promise that I’d care for my Dad. It’s a very emotional experience. My father doesn’t want hospice or any outside help so it’s just me. I also work a job. I can relate to watching them sleep and making sure they’re breathing. I’ve done that with both parents. Grieving them while they are still alive. I’m glad I’ve done it. It brought me closer to them. Hearing stories & secrets. Although, exhausting and it taking a toll on your own health it is a very bonding experience. I never went through counseling after my Moms passing. I had my Dad to take care of. I think I will be seeking grief counseling after my Dad passes. To heal the loss of both of them.
I held my moms hand as she passed away on April 17,2013 it broke my heart ! Her last words on this earth were “Bonnie Jean I love you so” my life with my mom was a challenge with me forgiving her many years before and guessing at why I was the one she always wanted to hurt? But finding out 50 years later why she felt she couldn’t show me love! This was not the reason I had put on it and would have never guessed why it was so hard to love me! But I will tell you I find dimes and I hear my mom say in my heart I LOVED YOU TEN TIMES MORE THAN YOU EVER THOUGHT I DID! I forgave many years before and I am so thankful that I did. As a grandma raising three grandchildren I know I made mistakes the first time around and I am diligently working to not make the same mistakes the second time around! If you want to hear more shoot me a message! Life is about learning and forgiving can be our hardest challenge but have the biggest reward!
Bonnie Dekay
Reading your journey made the tears start flowing that haven’t stopped yet. It brings back all of it. I don’t think you ever get over the loss of a parent. January 4, 2006, I was so young to lose my mom. I was only 32 when she passed, and there were so many more days, for the rest of my life that I would need her. I think about my brother, he was only 24. I had gotten to have her in my life for 8 years longer than he did and then there were my sisters, they got to have her for 8 and 10 years more than I did.
I miss her every day. I also feel like I was such a bad daughter. It helps really, to know I’m not the only one that feels that way. Maybe I can try harder to let that one go
I had packed a book bag full of my mom’s favorite children’s books to take with me. I was so glad that I did. I read to her. She would get restless and I would read her a book and she would instantly be calm. The last book I ever got to read to my mom while she was still alive and within minutes of her passing, was her all time favorite children’s book- love you forever. ‘I’ll love you forever, I’ll like you for always, as long as I’m living, My mommy you’ll be’. It was by far, the hardest book I’ve ever read, at that point. I made it through the book, having to force the words to form as I got closer to the end of the book. I could literally feel myself having to tell my voice box that these words needed to be formed. I can’t explain it really, I just knew I had to get through that book. I needed her to hear those words from me.
My moms death prepared me. 6 years later we lost our middle daughter. I wasn’t there for her, holding her hand, like I was my mom. I wish I could have been, but that isn’t always an option, especially when it is unexpected. The biggest thing that got me through, was knowing my mom was there for Kaytea. Wherever ‘there’ actually is, they are there together.
All true and well-said.