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”
8 weeks my dad passed away and I can’t cope very well and my mum is jus devastated and there’s nothing I can do to help her
I lost my mom 2 years ago. She had alzheimer’s so I said goodbye to her multiple times. She was a tough cookie and wouldn’t go without a fight. It broke my heart with the things the disease would make her say and the day she forgot who I was. I have more regret than I can ever express that I wasn’t there the morning she passed. I was at work and received a call from the nursing home and hospice nurse that she had finally passed. I collapsed at work not wanting it to be real. I hear her voice so often and feel her with me but I would do anything for 1 more smile, 1 more hug, 1 more time hearing her call my name (even if it was yelling at me haha).
You are SO spot on. It has been 9 months and the therapist has helped but I still feel like I was not enough. Even your picture post looks like one I have from her last hospital visit. Almost identical. Every day still the same. I miss her terribly and still have dreams about her.
Thank you for writing this. My mother passed away two weeks ago after a Week long his stay with hospice. Like you I feared leaving her, I needed to be there when she left this earth. I felt that since she was there when I took my first breath I needed to be there when she took her last. It’s only been a short period of time but I feel broken and lost without her. My dad is still alive and lives in the house but going there rips me apart. I don’t know you but we are in a club together that truly sucks! I send you love from someone who knows exactly how you feel!Â
My mum passed away all of a sudden sat next to me in my car (July 2018). That day she had come to my house in the morning as she had been to the G.P near to where I lived. She stayed for an hr and walked home. She rang me in the afternoon asking me to take her to the superstore, I told her I would take her in the evening. It was half term holidays from School. I went to my mums at around 5pm she said to me that she was going to visit my elder brother in hospital and she would be back soon. She made ice cream on cones for me and my children. I went out and came back at 7pm to mums with my daughter. We waited in the car for my mum to come out and she did. When she sat in the car she was quiet for few seconds and after a while she touched her head with her hand and said “oh I’m getting a severe headache” and in a split second she started to vigorously jerk. I was driving. I started to panic thinking what’s happening to my mum. I pulled over onto the footpath and I dialled for an ambulance as I came out of my car. I took her seat belt off and I saw that she was unconscious . I felt numb and cold. I told the emergency services that she was not breathing. I took my mum out of the car. I dont know how I did but I did. My daughter (then 12 years old) was devastated and traumatised. I told her to go inside the shop and get a bottle of water. I started to do CPR and her cheeks went pink for a few seconds and as I was looking at her face I was pulled back by some ladies who came out of their cars to help. The ambulance had arrived by now. I rang my brother and my dad. I felt cold shivers through my spine and from my knees to my toes I was completely numb. I had hope. I asked the ambulance crew would she be ok? They said hopefully. They took her into the ambulance and they didn’t say much to me, I sat in the front of the ambulance as they said I was not allowed to sit in the back with her. When we reached the hospital my dad and my brothers got there too. The doctor came to me and said my mum would never be able to speak or move as she is brain dead. I was frozen for few minutes . I couldn’t take that into my head. We were all silent. It was a horrid feeling. He told me that they tried to resuscitate her few times but she wasn’t getting a heart beat rhythm. I ran to my mum although they said I shouldn’t. I couldn’t help it. My family followed. There she was lying on the bed. We all surrounded her. She was cold. We were numb. I will never be able to get over her sudden death. The doctors said she had a sudden cardiac arrest. I still feel the pain. It feels more painful as the time goes on. I remember her words, her hugs, her smiles and her loving looks she used to give me. She was a very simple and humble woman, her death was a big shock to all our family and relatives. It shook us all.
I thought about writing about my moms end of life story. I would run her to the ER or call an ambulance, the hospital would make her better and I’d take her home and tell her about another page in her life story. Every day we turned another page in that story, but the last time I took her to the hospital, I didn’t get the chance to tell her about the last page. The day she died. The stress of taking care of a dying parent is so intense. I had a brother who did his best but he lived out of state and an estranged sister who would stop by after work for 15-30 minutes. A token visit to say she put in her time. I was on my own to bathe, shop and do her housework as good as she did. I too look back and say I could have done more. I put her before my family who were older and self sufficient. She was my life until the end. Good days and bad days, yet I regret the bad days more than I appreciate the good ones. Guilt? 2 years later I’m doing better, but I’ll never think I did enough. I miss her SO much…as I start to cry. I appreciate you sharing your story. Thank you!
Thanks for sharing , my dad passed 5 weeks ago this thursday. I was with him every step of the way, he had psp a rare brain disease, so it was a rapid decline from walking with a walker to limbs not moving , to not being able to swallow or talk , i do remember he bought suit pants, he bought us a bottle of whisky, he told me he was dying, he told me i had to go to church . Than he was started on morphine, like u i watched the rise and fall of his chest, lucky he was in famiky room at nursing home, they sent food in, and there was a sofa bed , so i slept , and wole every time staff came to do what was required, i stayed there 2 days, played music to say what i wanted, played a song u cant let go now daddy, ill be ok, i think im ready to do this on my own, i so wasnt but it would be selfish to keep him here,. Hardest thing to do grant someone leave from your life, when u want them here forever. At 1.30am after day i played him music he took his last breath, i saw a blue flash leaving the room so fast, i believe it was his spirit and him letting us know he was leaving .
It is a journey we don’t want to take but I wouldn’t have missed it for the world. I was with my Mom and Dad when my maternal grandmother passed. She had been comatose for two days. She sat straight up in bed, looked up and said In a rather cranky voice “I’ll be there in a minute”, layed back down and passed within the hour.
I cared for my Mom for 9 months after she was diagnosed with cancer. I told her how great a Mom she was every day. No regrets. An hour before she passed she had a totally coherent conversation with my Dad. She removed her wedding ring and placed it on her tummy. I think she did this so I wouldn’t have to. I inherited this symbol of my parents live of 41 years.
I cared for my Dad as well. He lived 10 years after Mom. He had been sick 7 months prior to his passing but was recovering. He died the day before his birthday. The expression on his face was one of peace and a hint of a smile. I have no doubt Mom came to get him.
Do all you can. The pain will bring you peace knowing you did all you could. Leave no words unspoken.
I lost both my parents within 3 months. My mom went first and there was no time for saying goodbyes or helping her over time. She passed away within a couple of hrs.  I was holding her hand and looking into her eyes when she passed.  Let me tell you when they say someone has a death grip on you it’s true.  The paramedics had to pry her hand off of mine.  I wish I had so much more time with her but that wasn’t to be.  My father went into the hospital 3 months later.  He was not doing good.  His organs were shutting down due to ischemic bowl and he had heart disease etc.  Ten days later he passed away.  I did get to say my good byes and it was when I knew his time was close that I whispered in his ear that it was alright to let go and be with Mom.  He looked at me gave me a smile and within a few minutes he took his last breath and went to be with the love of his life my Mom.  Â
My father lost his long battle with cancer last January. We decided to bring him home for his final days. Hospice came in during the day but at night we, my sister, brother, and my mother, took turns caring for him. We set up his bed in tbe den of our home, this was his favorite room. When tbey brought him home he was aware that he was home. He opened his eyes and looked around and smiled. He had not been that aware for awhile. I told him he was a good father and he raised us well and that we would be just fine, and he whispered yes and smiled. After that we simply helped to keep him comfortable. Three days later we were all out of the room that morning and suddenly heard a very peaceful but very loud sound, as if he was leaving his body. We went in and he had passed, He had the most peaceful smile on his face. It was so difficult but I am so privileged to have been there for his passing.