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”
This is 100%. I lost my mom December 26, 2018! She was in a nursing home after I cared for her for years and couldn’t do it alone anymore! She was there 4 months when she gave up! I sat by her bed and every single detail you wrote is how I felt and what happened. Thanks for your story!
I held her hand almost exactly the way you did and told her how much I loved her and it was ok for her to leave now as I knew she was in pain. The sad part was I was all alone when she passed. She lived a full and happy life. I quit my job so I could take care of her and I am so glad I did so that I could be with her. That was April 3, 2012 and I still miss her every day. I lost over 30 pounds because I couldn’t sleep (I was afraid to) and had no apatite so I wasn’t eating much. I miss her so much!
Watching this happen to my Mom. Your words were very comforting. I will include you and your Mom in my prayers. Thank you.
Peace to you.
This so hit home with me. I was with my mom and dad until they took their last breath. It was the hardest thing I’ve ever done. But I wouldn’t have changed it. I miss them everyday and on their anniversary I remember everything about that day, the smells, who came by, what was said, every minute, every hour. It’s sometimes comforting and other times it’s gut wrenching. Thank you for sharing this story.
My mother’s passing was beautiful. Although she was unconscious on a ventilator, we asked if we could dress her, put on her makeup and jewelry. We took turns taking pictures of our hands intertwined with hers. We all gathered round her and gave everyone personal one on one time with her. We all gathered round her and asked the hospital staff to release her from thr confines of her breathing tubes and oxygen. We labored with her through the night as she peacefully slipped from us. Once she passed, I studied her face one last time, and told her I loved her and left.
My Mom and Dad were the most amazing people! Their love for Christ showed in everything they did…honestly though dad more than mom. My mom gat macular degeneration and diabetes and by the time she past, 2 years ago this month, she was almost blind. It was very cruel to her because she could not see any of our faces anymore, just the outline. This made her bitter and honestly kinda mean. I had always been the closest of us kids to her and she was everything to me! The last few months were hard for me though because she began to take her anguish out on me. I cried a lot! She got pneumonia and septic shock from a sore that she did not tell any of us kids about, and her body could not fight anymore. We all got to see her at the hospital before she passed but she waited til everyone but one of my brothers had left to actually go home with the Lord. My dad was still with us but at the funeral when he said his last goodbyes to mom he told her that he would see her soon. Dad had some alstimers and could not be left at home without mom. We found a very nice, small care home for him and he was content. He actually finally got to talk to some of the guys there instead of mom always interrupting him,lol. But the Friday before Labor Day he had a stroke. All of us kids made it to the hospital that evening while he was still coherent. The first thing he said to me when I walked in was “Deb, I’m in pretty bad shape” I said “I know Dad” and held his had and gave him kisses and sat with him. He was in pain so they gave him morphine and once that kicked in he did not wake up again, just slept until his passing 3 days later! 7 1/2 months and I lost both of my parents! The grief still comes but it comes in waves and sometimes out of the blue. I think about them every day and just wish I could get one more hug, one more “I love you” one more anything….
Thank you! My mother passed peacefully two days ago. She was surrounded by her children, grandchildren, great-grandchildren, her brother, and other loved ones. She had been needing help eating and drinking for the last few months. I went up to the nursing home almost every day at lunch to help her and sit with her and her brother went for supper. My siblings who live in town would stop in and visit and even watch a basketball game with her. The day before she passed, I was with her for lunch. She hadn’t been very vocal for a while, but that day she told me what she wanted to drink or eat and when she was full. I was with her for about 2 hours. I left to go to dinner and a movie with my husband and some friends. Little did I know that would be the last time I would hear her voice. Her brother came to help with supper and called me for our usual evening update. She had also talked to him during supper. They talked about who had visited her that day. He asked if I had been there and she said, “Yes. She sure is bossy.” He left after an hour or so. We got a call around 10:00 pm that her oxygen level was low, so they had put her on oxygen. Around 6:00 am, I got a call that they had called the hospice nurse because her oxygen level wasn’t improving. I threw on clothes and raced to the nursing home. She was still breathing, but was unresponsive to me. The hospice nurse confirmed that she was in the dying process, so I put out the call. Within an hour, the family started showing up. The home moved her to a private room so we could all be with her. She laid there for several hours listening to all of us chatting. We took turns talking to her and holding her hand. A little after 1:00 pm, I was sitting at the foot of the bed and saw her “shudder.” I turned to my niece and said that I thought we were near the end. When I turned back to look at mom, I saw that she wasn’t breathing. I rushed over and put my hand on her chest and knew she was gone. I can only hope that when it’s my time to go it will be as peaceful and painless. Now comes the transition back to a life that doesn’t involve those daily visits. I know I will miss her dearly.
My mother passed away in September. My sister and I stood by her side for two weeks while she was on life support and in critical care. It was heart breaking to watch my mom die slowly those two weeks. All kinds of things racing through my head. I was glad I was with her and holding her hand when she took her last breath. It’s something that seemed so surreal and unrealistic watching her die. Heartbreaking to see her go. She could only communicate with her eyes. I could see the pain in her eyes. It’s a experience I will never forget.
She gave me life and was with me when I took my first breath and I was with her when she took her last breath and left this world.
Thank you for sharing your story. I went through this with my grandmother many years ago. Now doing it again with Dad and Aunt. Prayers
Wow, this really struck home with me. My dad has been gone for 27 yrs and my mom 11, i took care of her and had such similar experiences. We were very close. People would say to me what a wonderful daughter you were to take care of her and I thought it so strange, what else would I have done, she took care of me. She always apologized that my sisters and I had to do this for her and felt so bad.
My mother was 99 years old and lived with me for over 10 years and I lost her four months ago after she fell and broke her hip .I was able to takeoff work to care for her at home which I will never regret but it was a time I will never forget but it was not easy.. so many of the things you wrote about were exactly what I went through and how I feel.. I was very close to my mom she was my best friend. After I brought her home she did not want to eat anymore ,slept all the time and was not able to walk anymore or go to the bathroom on her own and her dementia was so bad I don’t think she even knew who I was. She did talk often to people who were not there but when she would call my name it was very special to me and I would say I love you and she would say I love you back and I will never forget those words. She was only on hospice care for two weeks before she went on in conscience and two days later passed. I sit by her bed and would give her drops of water and talk and sing to her and tell her How much I loved her and how much I was going to miss her and eventually tell her it was OK to go that I would be OK. I can still see her face in her hands and everything about her. I still feel like I hope I did everything that I could and that I did not give up on her. But mostly I miss her so much and hope she knew how much I loved her
We brought my mother home one week before she died. She was on hospice and I struggled with the concept of palliative care. Fortunately my mother was not in pain and was very alert almost to the last day. We found a book she had written about her life and I sat and read it to her. She heard her story in her own words and reminisced sharing additional details as I read. Two days before her death her grand daughter asked her how would she let her know she was still here. My mother responded, “I’ll sing”. That week was the most spiritual experience of my life. I was privileged to be at her side the moment of her death.
In May, it will be 9 years since my mother passed away. My brother and I spent 44 days in the hospital with her until she passed. Every day, for 44 days. I’m crying right now remembering how painful it was to see her like that. How helpless I felt that couldn’t make it better, couldn’t make it go away. It was the most painful expertience I’ve ever had and I can only imagine one thing that could be worse. Not being there. Every day. For 44 days. It was the greatest gift we ever could have given to her and nothing else could have put her more at peace. I will always be grateful for that opportunity and more grateful that i loved her while she was alive. She was my best friend. It wasnt always like that, i made mistakes and so did she. But love, love the ones you got while you got em. You wont be sorry. Thanks for sharing your story. I would like to tell you it gets better but it doesn’t. You just get used to it. Good luck to you, you are a good daughter.
I was 19 when my Mom died. She had cancer and we were in the hospital. My Dad and my Mom’s brother stepped out for a quick dinner while my fiance and I stayed with her. Soon after she took her last breath, she had been waiting for my Dad to leave. On my 24th birthday I had to remove my Dad from life support. He was diagnosed with diabetes 3 days before when I found him in diabetic shock. I had just left his room to go home and change, get something to eat, and the hospital called for me to return. I knew the machines were doing everything and asked that they be turned off. I just turned 44 and I think it is hitting me worse now then it did then. I am very sorry for your loss.
One of the hospice workers took time to return to our house after her shift ended to make sure I went to bed. She ended up tucking me into bed. This I could accept as normal. A few days later, as I held my momma in my arms and my sister held momma’s tiny hands, a different nurse would say that she was going to call it at 9:09 am. In my confusion, my eternal tiredness, I asked, “ Call what?” This I could not accept, that she had whispered away so quietly. I had cared for her for 15 months. I had wanted more time, more patience, just more. Her name is Bertha and I hear her voice everyday. She has been gone from this life for a year. Thank you for giving your story. So sorry for your loss.
You were luckier than me. After my dad retired they went to live in Florida. I was born and raised in Ohio and still live here. As she got older she longed to come home but my dad hated the cold and loved his golf. I got to see them maybe 3 times a year. I was not financially able to jump on a plane or afford a 2 day road trip. I had a full-time job with only so many vacation days. My mother was diagnosed with Alzheimer’s. Each of the few times I saw her she was a little bit worse until she didn’t know me. The last time I saw her was 2 weeks before she passed. She was in a nursing home in a wheelchair. I got her to eat a little pudding but she didn’t know me. Two weeks later she came home to be buried a couple hours from where I live now. The next morning when I got up and looked in the bathroom mirror my mother’s face looked back at me. Not a ghost, my face. Everyone always said I looked like her but never realized it until then.
Wow my husband has been taking care of his mom for a year on January 21 2019 and she went to heaven today January 2020 and this popped up just what I needed
Beautiful. Thank you so much. I was with my grandmother, father and husband as they took their last breath. Painful.
This is very fresh for me. My dad just passed away a week ago. I am an ICU nurse and have held hands of dying patients and the hands of their loved ones but I really had no idea how this would feel and really how my words really weren’t going to help those left behind. I’m broken by his death and that my sisters have ignored me throughout the whole thing. I’m grieving inconsolably and can’t seem to shake it at all. My dad would be doing some ass kicking right now if he knew what was happening. I wish I had been better prepared for this whole thing
I loved the article. My father died when I was asleep and I couldn’t forgive myself for years. I did see a therapist and finally have forgiven myself. Thanks again for your article