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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803 comments on “Caring for a Dying Parent In Their Last Days – a Personal Story”
My Dad is currently on hospice and there are days when I think I have it handled and I feel strong but then something will remind me of him and how missed he will be. I think to myself “how can I carry on without him? He is the one steady, strong and truly loving person in my life.” He raised me with unconditional love and a great love for God. He is the glue that has kept our family together. It is so hard to see him struggle to walk and he is still so fiercely independent.
I really do appreciate your words of wisdom and I thank you for sharing your experience
I tool care of my Mom & Dad, They were both on Hospice at the same time. My Mom had dementia and My father stopped walking and we bedridden. However he had his mind and mom had her body. I struggle everyday, since they both passed 8 months apart… Did I do my best. Was there something more that I could have done… Were they comfortable or in pain? They say everyone dies differently… my Mom struggled and fought for 5 days… we sat by her side 24/7 and waited… Finally Hospice said go home get some rest and come over fresh in the morning. WE all did that. Once we all arrived home and were in our beds… Mom decided to finally rest. She waited and passed in her own way. My Dad on the other hand struggled for days. My sister decided to come up from Indiana to check on him.. I stopped by after work it was only a matter of time. I sat holding one hand my sister his other. We talked to him .. let him know we loved him and how important he was to us. We told him we would be ok…he took his last breath… and finally rested… . To this day.. I miss them both… I still wonder…. So please.. treasure them… There is nothing like the pain of loosing a parent.
I sit with my dad the last 3 weeks he was alive. The only time i spent 8 or 10 hours away was when 1 of my older 2 brothers would sit with our dad. We were told that there was taking him home this time so we as his only 3 living kids signed papers taking dad off of life support. Hardest decision you will ever be him. You justify it by saying were doing what he would have wanted us to do.. I thought about for a long time afterwards, iam still not convinced that i made the right decision. Just 6 weeke or less earlyer he was fine. He sure didnt get around like no old 80 year old more like a man in his early 70. He took care of himself, lived by himself kind of, i rented a trailer house from him on the same piece of land. So for the last 4 years of his life our front doors were a 100′ apart. I step outside and look right at my dads front porch. Great 4 years of my life that i would give anything to live again. I moved to my dads property almost 8 years ago and this dec. 14th will be 4 years that hes been gone. For the first year i had my dads ashes sitting on a dresser in a bedroom in my house, and every morning when i got up the first thing i used to do was go to see my dad. I go into the room and say good morning pa, then open up the curtain’s. No matter rain or shine he loved every day no matter what the weather was so i made sure he sit high enough on the dresser to see outside. He always went to bed early so i always closed the curtain’s just when it started to get dark, thats alway when dad would start closing up for the night. Dad would ask if i wanted to go on a ride with him into a little town called Gridley Ca, he would go get beer, fill up his truck do a little shopping. A trip if you did just that would take 90 minutes at the most unless its a day he fills like just driving it could turn into 4 maybe 6 hours. He would drive out called the sutter buttes. Smallest mountain range in the world. There would be times we talked the whole time about everything. Mostly tho it was dad telling me about growing up all though that area and what it was like and the things they did. Then there were times we spent the same amount of time hardly saying a word but still had the greatest day. Those days i never get back but those days i never lose either and only i have them. I was very proud to be known as chuck campbells son. Like my dad i was left handed. I was my dads youngest and iam left handed and my youngest daughter is left handed and my youngest granddaughter is left handed and my youngest grandson is left handed. Pretty awesome man my father was and not a day goes by i dont hurt for my dad.
I’m currently watching as my parents slowly decline and prepare for their journey. It’s the hardest thing a person has to go through. But I owe all I am to both of them. I’m alive because of them.
I telling you that you hit the nail on the head it’s been 18 months since Ma died I’d told my siblings that I wouldn’t have to go through the grief that they would because I was there day in and out and took the Care with Pleasure that they choose not too some how today one of my siblings needed me and of course I came through however grief hit while seeing her and we both spoke of and cried of our miss of Ma then I come across your letter that I could have written myself Thank for Sharing and I’m not sure whether You Believe that there IS a Higher Power that Covers Us or not maybe You will believe that the body dies but the Spirit lives on my siblings visit Ma’s grave often however I believe she comes to me as the Red Cardinal, a Butterfly, spider and just about anything else out of the blue will give me Comfort or laugh or something I usually would not have taken the time to comment To GOD be The Glory I did Thank You again for Sharing May Peace be unto You.
This is so me..I sat there as she took her last breath..just her and I..I relish it as a gift because she was so not there when her own mon passed away and regretted it over 30 years. My best friend confidant and my mom most of all..we were a team even though I have siblings..she waited for it to be just us in the end..may I add she passed away in my home where she’d asked to be if the time came..October 2016 will forever be the day my angel got her wings..Thank you for writing this
Thank you for sharing your story. Everything you said is spot on. I lost my mom in May and everything you said hit home.i took care of her those last few difficult years and it was a blesding though sometimes a burden.
I unfortunately cared for and watched both daddy and momma take their last breaths within 23 months of each other. I feel numb at times while most days I do what they always tried to do, laugh and joke. Sometimes I cry and no one even knows. I was daddy’s girl and momma and I had a bit of a complicated relationship but she was my momma nonetheless. I often think of things that was said. Thank you sooo much for writing this because I can relate on so many levels and it just helps knowing that what i feel and think about is apparently normal. I have not sought counseling but i feel like I’m doing ok for now. I dont talk about this a whole lot to anyone. I just try to live a happy life and try to be brave. I sure do miss them though. This December 1 will be 1 year ago as i sat by my mother’s side and watch her leave this earth.
After losing my husband several years ago, I really understood extreme greif. I lost my father when I was 17. I have lost my mother and my brother. I am the baby of our family. My baby was exactly my age when her father died. Greif is one thing that I know too much about. I have thought about writing about it. It has been such a big part of my life after all.
On Nov 11 will be a year I lost my mom. She was a quiet yet spiritual woman. She loved her family and wanted to always make sure we were taken care of, even in her final days she wanted us to take care of ourselves. I struggle with not being the best daughter myself. I think of opportunities I didn’t take to spend time with her and have regret, but the years and so many special memories I have of her I will treasure forever. I miss her everyday and do talk to her. If some don’t believe in that, it’s ok, but it gives me some peace just to talk to her and listen to what I feel she would have said.
I just lost my Mom in August. This truly touches my heart. Mom went into a coma before I could get to her and less than 8 hours later she was gone. That’s how she wanted it.
I will always love the time I had to spend with my dad as he was getting ready to leave this earth life. We had the time to grow closer than we had ever been. It was difficult to place him in a care center when my family leave ran out, he died 2 weeks later. But I still have a peace for the time I had to share with him and the knowledge that it was his time to move onto the next life.
My mom passed away suddenly, and very unexpectedly. I wish I had been able to be there. I’m glad she didn’t suffer, at least the coroner says she didn’t. I’m not sure how he can be so sure. I wish I hadn’t forgotten to call her back the night before she went to sleep and didn’t wake up to call me and remind me that I forgot to call her back. She was a wonderful mom. Not sophisticated, or elegant… well, except her hands. They were elegant. I loved her hands. I’m glad her death wasn’t slow and agonizing. The pain I feel from having her ripped away without warning, I’d much rather bear, than watch her suffer. I suppose it doesn’t matter If we watch them die, or if they’re taken suddenly and without warning. Either way, there’s a shift in the universe when your mother dies. It’s been 9 months today. My heart still hurts, and longs for her.
Thank u for ur story I too I’m going threw it for the second time first my father now my step mom .one thing I know is hospices people are a great help
Wow this really hit home, I lost my mother over a year ago and how I miss her.. Your story sounds so true to mine. I was able to be there the night she passed with my sister and her fiancé and my wonderful wife who is a nurse of 23 years.. As I sat there and watched her breath very heavy the thoughts that raced through my mind. How I would miss her and was I the best son I could be to her. As I am older now I look back on the things I took for granted with her.. How she loved her children and lived her life for us. I wish I had those times back when I was younger and understood what it was all about.. Now as I look at my children and think I hope they are here for Mom and Dad when we pass.. The great times are memories now of most wonderful lady in the world I called Mom.. Thank you for sharing this and God Bless!!
My mother had a sudden stroke out of nowhere 2 years ago and died a few hours later. For her, it was the perfect way to go… quickly, no months of pain and anxiety, no losing faculties. But I was on holiday at the time and I struggle to forgive myself for not being there. I would have done anything to have held her hand and told her how much I loved her and had appreciated her. My older brother and sister watched her leave her body , peacefully and with no fuss, just as she had been in life. The phone call from my brother and the journey home later that day, too late, haunts me still.
Thank you for sharing this very personal and honest article. It will help a great many.
And everything you do, say, and see will remind you of a time you went there or did that with them…
You will never have someone love and cheer you in…leaving you wondering about your own worth sometimes
You fight to keep their memory and spirit alive…which is your greatest comfort and hardest concern
You know life will never bee the same…and aren’t sure you want. To love it
But you do because despite the tears and pain and sadness, you know your job now is to spread
The love and compassion they can you to others…
Counting the days tiller are together again…
What a heart wrenching story. Im sorry for all you have gone through. My 75 year old mother has dementia with Alzheimers. For the last 2-3 years my mother has progressed slowly. Just recently, she had been getting worse. She had started hiding her money or other things and then can’t remember where she hid them. I’d attempt to help her find her stuff and made her promise to tell me where she hides it. She very often counts whatever money she has in her purse even if it’s 50$. I find myself annoyed very easily. I love my mother but I’m basically taking care of her til she dies. I am 1 of 9 children but the only one who is available to care for her. I love her so much but find myself getting annoyed very easily and then turning into a bitch. I don’t want to be like this but can’t stop. I had a hysterectomy when i was 31 and i am 53 now. I have had no patience since back then. I don’t know how to make her know that she is the most important thing in my life. I don’t know., maybe counseling. I hope it is getting easier for you as the days go by. I know the hurt never goes away. Thank you for your story.
This was very hard for me to read. I brought my mom home on hospice not quite a week ago. My mom has lived with me for the last 6 years as I was her care taker. She has dementia. I feel like my life is surreal right now. I sometimes feel disconnected from myself and emotions. And other times my emotions are relentless. My mom went in to the hospital and she had pneumonia, was aspirating, has sepsis, and there was something going on with her heart. How she is even alive is beyond me. I guess she is ready or done in this world. I tried to spend as much times as I can with her, doing things you just don’t do. We have ice cream at midnight, I lay in bed and holder, she had 2 puddings and ice cream for dinner when she was in the hospital. No rules, this time is hers and I am just trying to navigate my way through the end of her journey. My heart is broken, and I will miss her beyond belief. I fear what my life will look like. She has been my life for 6 years. I am glad that God gives me good days. Today was a good day, but the previous 3 were bad. No one can ever replace your mom. A wise nurse in the hospital said to me, we children, bury our parents, she said not for one minute would she want the tables turned. It was comforting in the moment has I had must had the end of life talk with her wonderful doctor. She then hugged me and shared she had lost her mom this past February after being sick for only a couple of months. God is with me in these days and I see him everywhere.
My mom passed 6-17-19 at 8:24 a.m. i the hospital room that she struggled and fought to stay here. I sat by her bedside, yes I to watched every breath she took. As her chest rose and fell, there were moments when she b.c would talk about her gardens, vegetables she would CDC sometimes whisper then look at me and say, can you see your dad, right there? He is saying to come with him. But not yet. Then she would be completely lucid for short times. It was in the very early morning that she slipped into sleep and she never spoke again. I sat next to her, for about 30 hours and then she began to breathe very labored, shallow, cery long apart. I played Jesus Loves Me on my phone for her to hear, she loved that song. I told her if she needed to go, that we would miss her very much, but that because we loved her so very much, it is ok for her to go. I assured her that I will stay right here beside her for however long she needs. I told her that she will be with Dad again, her spouse of 62 years. I rubbed her habd and kissed her forehead and hands and sat and cherished each last moment with her. Many days I question myself about did we do enough, was the hospital right in Ll things, what if I upset her but did not know it? Some days I can just remember the beautiful memories and love we shared, others not so easy. It is truly a journey. I love you mom ❤