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 lost my mom on Sept 17 due to complications of Parkinson’s and dementia. On Oct 14 I lost my dad ,
Everyone says it was from a broken heart. He gave up
Watching both my parents die is the hardest thing ! They were both slow deaths . I feel traumatized
By having to administer strong pain meds to aid in comfort for them . I know there not suffering anymore
I can’t stop feeling this ache in my heart ❤️
I sat with my dad as he passed away. I had been his and mom’s care giver for 16 years. I knew more about those health and needs than I did my own. I was the child that was little that told them when they got old I would come take care of them. I held onto that promise. Daddy was in great health to be 91. He got the flu on a Thursday and slept all day Friday and Sat. I told him let’s go to hospital. So I called ambulance to transfer him there as he was so very weak. They told us he was in critical condition and needed transferred to another hospital. I agreed. They got dad set up at the hospital and daddy told us he wasn’t going to make it this time. My heart shattered. They told me call the family in and wait for it’s just a matter of time.
Daddy had already told me how to do his final days. No life support no machines,just let him go to his maker. But you don’t know how hard that is to do to tell them not put anything on to save him. I watched his final two days not leaving his side. We moved him to hospice for his final hours. I laid up in bed beside him and held him hoping he knew I was there. Just 5 hours after being there and my arms around his tiny waist,I felt him when he took his last breath. How the hurt hurt. I got up and told the nurses he was gone. They came to verify no heart beat. I woke the family up and told them daddy went home. Still 7 months later,I’ve not grieved for him because I feel it was a bad dream. I think he’s gonna walk back into the house anytime.
I’ve gone thru the guilty stage where I felt I gave up on him and let him go. But it was his wishes I had to carry on. I’ve been thru the denial stage that he’s gone. I’m stuck in that one. I’ve been thru the mad stage for him leaving me but remembered that God only lends us our lived ones until He needs them back. Scripture of God’s words has helped me.
Sometimes I open my mouth and things daddy would say just comes out. I see certain things we did together that is funny and at times not so funny. I’m so glad that we made many memories together. But one thing is for sure,I miss that man. My best friend. My hero. I was always daddy’s little girl
Daddy called me early in the year of 2013. Momma was sick n in the ER. She had been throwing up. They had been there for 3 hrs. So I drove up there. Dr said she had a blockage. Then came back in n said she had a hernia. So he opened her up to see what was going on. Mom.spent a total of 146 days in the hospital. Then got slightly better. My momma took a slight fall in Oct of 2014. It got hard for her to get around. By January of 2015 she couldnt get outta her chair. My sister took her to the local doctor who told them nothing was wrong. Sister took her to the city to a specialist who found a mass on her hip it was cancer. Momma was an 18 year colorectal cancer survivor. At the end of February they let us take her home. I went home with mom n dad an was there till the end of April. She just steadily went down. She went thru radiation. I wish we had never put her thru that. But she felt like she had no choice but to do it. She was fighting for her life. The doctor called me on my baby sisters Birthday an told me mom had pancreatic cancer. She lived 16 days. Daddy sat up with her every night. The early morning of the day she died daddy came an got me to help him change her gown because it was wet from trying to drink water. She was so heavy we couldnt get it back on for some reason. But she only weighed 80lbs. We just put her gown on backwards n buttoned it up. I said mom I’m gonna go back down stairs n I’ll see you in a couple of hrs.The last thing she said to me was I love you Lizzie Beth! Hospice was called that morning n walked up on the porch. Mom was gone when they came inside. It has been so hard. Mom was the wife of a soldier for 33 years. We are the daughter of this warrior. Daddy drives to the cemetery hes says only on Wednesday n Saturday. But that’s not what the guys at the cemetery says. He is there alot. They were married 62 years n were high school sweethearts. The journey was hard n is a learning experience. Even to this day. I know mom is better off n shes not sick anymore. 3 new grandbabies have been born for a total of 5. God gives me strength n the courage to carry on! God speed to you all!
I watched my mother painfully die from cancer in July of this year. I was her caretaker decision maker for the last 5 months of life. I sat by her bed rubbed her feet, talked to her, ran my fingers through her hair. I let her know it was ok to go, my brother and I would be ok, we just wanted her to be at peace. All of the things you wrote I experienced and it brought me to tears once again remembering the struggle she went through at the end of her life, all the thing’s she wanted to do but never had the chance to because cancer stole her life away. I am currently in therapy to help deal with the loss of my best friend. I miss her everyday some days are easier then others and other days all I do is cry. But life goes on, the world doesn’t stop because your parent dies, you have to learn to cope and move on. Thank you for sharing your experience it resonated with me on a very personal level.
I cared for my mom with hospice at her home for almost a year. She was just 68 years old. That was the longest/shortest year of my life. I was blessed to be able to take time off of work to care for her. We had lots of conversations, read, watched tv and just had quiet time. The week that she passed I let the hospice team persuade me into putting her into the hospital for a weeks respite so I could recharge. I did it very reluctantly. The Saturday morning that I was to pick her up to come home I had a call that she was non responsive. She never made it home. To this very day, 23 years after her death, I have so many regrets. I can’t change anything. I feel that she thought she was a burden because I put her there. I hope and pray I see my parents again. I have so much to say. Trust your gut. Don’t let anyone make you feel like you should or shouldn’t to something. Regret is hellish. I try to be thankful for the year we had together as the hospice team gave her 3 weeks to live and she lived almost a year. That was precious time. The older I get, the more I feel it. I try to relay that to my sons, but they are young, with families and just don’t get it yet. ❤️ Thank you for sharing your story.
Thanks for sharing I’m the parent and think of my family and them having to experience the loss. Knowing they realize my endless love and I’ll always be with them
I lost my mom when I was 23 to heart disease. She had been fifty for less than a month. I got to the house as they were taking her down the steps in a stretcher. She was not responsive . They were moving impossibly slow. That 10 minute ride to the hospital was a fast playing reel of memories in my head of us. By the time I got to the hospital they were already pulling us into the small room to say they tried everything they could. I left and went to see her. I held her still soft and warm hand. I tried to memorize all the wrinkles. I kissed her face and smelled her skin. I begged for her to wake up. I was in such denial I left the hospital. I regret it to this day. I should of spent more time with her after. I often wonder if it is easier to lose a parent suddenly, or to know it’s coming? Truth is it sucks either way. It breaks your heart and you just do not heal from it. A piece of you is gone.
Hi my name is Donna and I lost both my Mother and Father In January of 2001 Just 16 hours apart. It was kind of a love story if you can imagine that. I often say I’d like to write a book. It was so traumatic for me as I was so very close to them. I should have seen or talked to someone but I never did. I know that a huge part of me died when they left me. One thing I remember my mother saying to me through the years was if your daddy goes I go to and I knew she meant that. She watched her entire family pass on and my Dad was her world. They made it to there 50th Anniversary and passed a week later. Thank you I enjoyed reading your story♥️ I could go on forever with the memories of my beautiful parents I find my peace knowing they are together I guess but I still cry a lot. They will forever remain in my heart until we meet again one day♥️
I was with both of my parents as they crossed over. It was/is a different experience with both for many reasons. Euth my mom, my whole world shattered for a very very long time. I prayed for her relief and felt guilt for it after. I began to question who I was and what my purpose here was. I became zngry with God, with life and with family. I felt cheated, as if there were a hole in the universe and no one was aware. I had nightmarish dreams if being scolded because I had left the hospital and when I returned she had gone into a comatose state and it had been less than 12 hours. Everything I did during those last days was done with intent and purpose, but I felt no less bad for having done them. My mom passes in 1989 and I had just turned 26, had been married for 4 years and had no children. I was the oldest of 5. 4 if us were out of the house, one still in high school, whom I brought into my home until he left the nest after college. 1 out if stae, 1 out of country and one home on leave for the Christmas holiday.
My dad passed in December 2018. I saw him die a slow death with as much dignity and positivity as he could have in his situation. I did/have not grieve/d the loss of dad the same. His passing brought back many regrets and negative thoughts about our unit of which I thought I had put to rest. I am thankful he no longer suffering as I truly believe he suffered in one fashion or another his entire life. I have come to accept he was a broken.man who did not have it in him to be the “dad” we had wanted to be. I have come to understand he did the best he could with his own demons and that he loved us as best as a broken man can. I have forgiven him for not being whom I thought he should have been and I have forgiven myself for n ok t understanding him much sooner.
I miss them both and I always will. I have come out of these losses a better human than I was before these experiences.
Life is like a beautiful tapestry. On one side ot creates a glorious picture. On the other ssd’s side there is nothing but loose ends that weavexand intertwine an dx make absolutely no sense for the mind to comprehend. It isn’t until the end of life, not necessarily just your own that we begin to see the glorious picture God has created for us.
This post really caught my attention for two reasons. I was with my father during his last four days at the end of life. I had a young child (less than 1 year old), at home. I left his skate for 2 hours to grab a bite to eat. My father passed during the time I left him and I can never forgive myself for not being there. Most people tell me, he did this on purpose but an outcome I will never understand as I spent days playing music, rubbing lavender cream on his body, wiping his mouth with cotton to help prevent sores and I want there.
Fast forward 4 years later, my mother had terminal cancer. I worked full time, husband traveled 5 nights per week and my sister and daughter both called to ask if I heard from “mom”? I replied “no”, I’ll drive to check on her after work and when my husband was home so my son would not be off his routine. 4 hours later, I finished work after a 10 hour day and drove to check on my mom. I entered the family home with my keys as the door was locked. Walked up the stairs to find the tv on but no one there. I saw the bedroom door was closed. I entered and found my mother, whom had passed away at least 1 hour earlier. I’ll skip the details of police interrogation and the challenge with the DNR.
As the the baby:youngest of the family and with the most responsibility both personally and professionally, I still felt I could have done better for both my parents.
No words can describe what you and others have been through. The one thing I’m trying to make peace with is not being there for the last breath. I know my parents knew what I did for them but still….feeling like I could have done more will haunt me!