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”
3 & 1/2 yrs ago. my mom. hospice and morphine. she was in florida, so i went and stayed. she would live- no she would die- not she wouldn’t- yes she will, for weeks. back and forth to the nursing home, then hospital, then hospice. her 95 yr old husband another consideration through the entire thing. plus we sold their home and cleaned it out so they could come and live with me. it was not to be for my mom. the moment the dr. told her it was ‘endstage COPD’, she asked me how i was doing, she cried, i went to sit next to her as i cried also, and she shut down emotionally and never let me in again. she told me not to touch her, not even to hold her hand. she wanted me there, near her, sitting in a hard chair in a cold room at the hospital. finding raspberry shaved it for her. finding the people who would clean her up and change her diaper, standing up to the head nurse who insisted she take her pills, mixed into the vanilla pudding to get them down. tolerating the sideways glances and whispers through the nurses station after i insisted she didn’t need to take anymore pills if she didn’t want them. i, like you, didn’t dare move, for fear of waking her. i sat hours and hours not touching my dying mother. mom was always quite demanding. living her life on her terms. one night at 2 am, as i was struggling with fatigue, sadness, pain all over my body, she awakened as i quietly shuffled around the room getting ready to go back to her home to check on her husband. i said goodnight and she begged me not to leave, i took a stand and explained that i was a 62 year old woman with fibromyalgia and if i didn’t get out of that hard chair, i would not be able to walk the following day. as expected, she closed her eyes and closed me out. i had let my mother down- again. i was never enough. i finally called my younger brother to come and be with us. he came, thank god. i was able to get a shower and a few hours sleep, now and then. when she was transferred from the hospital to the hospice, she has been on low dose morphine for a couple of days. it caused her to be confused. she yelled about not wanting to leave the hospital, she wanted to die there. the transport people strapped her onto the gurney and practically ran down the halls to the emergency exit as my brother and i struggled to keep up with them as we carried all her stuff. she saw me running beside the gurney and proceeded to yell at me to get off of her, “let me up, i said get OFF OF ME NOW”, she yelled in her mom voice. i gently explained that i wasn’t on her, i was beside her. she yelled at me again. The little girl in me crumpled to the ground, as the ugly pink hospital tub that was filled with the left over ensure and wipes and lotion etc. spilled onto the floor. I sobbed and sobbed in the hallway next to that emergency room exit and looked up and saw strangers stopped in the hall looking at the spectacle i had become because my mom was being taken to the place where she would die and somehow all i had done for her still was not enough. just then my brother came around the corner with another ugly pink tub full of stuff and i sent him after mom and he rode in the ambulance with her. i drove like a wild woman, barely seeing the road for the gut wrenching sobs coming from my soul, to the hospice, to arrive to my brother a mess for having taken the abuse that our mom heaped on him for the duration of the transfer. she yelled at him to get off her also, over and over, in the mom voice. she was supremely agitated upon arrival and had to be sedated. we stayed with her for the next 4 1/2 days, never touching her per her orders, watching the life drain away, one of us with her at all times. physically she changed as you say. i never remembered her nose as large, her mouth hung open, she was in and out. i asked her if she had seen her mother yet, and she shook her head no. once she opened her eyes and looked right at me and asked if my twin brother had arrived yet.. no, i explained, he was ill and could not come. she died in the moment that my brother went out of the room for coffee and i dosed off on the couch in the room.. i missed it. she left when i wan’t looking. she wanted us there, but she didn’t let us in. when she was in the morphine sleep and couldn’t tell, i slipped my hand underneath hers and sat for a while pretending i was holding her hand. i have no regrets. i was there for her all my life. she wasn’t easy, but the experience took life from me. it drained me in a way i didn’t know was possible. so for the life she gave me, i gave some of that back to her as she exited this world. she wanted no services or ceremonies. only for her ashes to be sprinkled at the place of her childhood. the experience is all encompassing, then it is gone, over, nothing.
While hard to read, it was timely that I came across this. My mother passed two weeks ago after a short but valiant fight against brain cancer. I watched a tall strong woman wilt before my eyes in a matter of weeks. We stayed with her during her last 24 hours, holding vigil through the night. We were urged by staff to eat, sleep, go home they would call us. No way. We held her hands and stroked her hair while she took her last breaths. We would have been nowhere else. And while the hole in my heart is this great, black void, I take small comfort that her suffering was relatively short. Thank you for this.
I related to all you wrote. Thank you for this.
I lost my dad a year and a half ago. He was a big guy all his life until he began to dwindle down to nothing. I had to go to my parents house to get him out of the house and the car to go anywhere. That was so painful for me to do. And I know just as painful for me to do for him.
We lost my oldest brother 3 years prior and my dad never really emotionally recovered. That day was the day his slow death began.
Thank you for writing the reality of what a parents true death is like.
This so describes my last day with my mom! I would never want to relive that day even if I could! I couldn’t seem to tell her enough how much I loved her. And correct! I could never relive or want to relive that day! My mother was so pretty in life and extremely beautiful in death! I did my very best to make sure she would be so pleased with her funeral, from her clothes, hair, nails, flowers, etc! It has been a very long three years since she passed on and just now I’m getting better, not so depressed! And yes, I was offered and accepted counseling with Hospice! I cried reading this post. Thank you for sharing your journey!
Loved this and I feel your pain. My mom passed of cancer and it was the most difficult and painful thing I have ever experienced. She was my sole mate. Still is difficult 7 years later. Miss her terribly. Thank you for your insight. I am sharing it with a friend who still struggles with depress from losing her father. All the best to you.
My mom was 92 when she died March 25, 2017. I was her youngest child, her only daughter, and only myself and my oldest brother her surviving children of her four. To say my mom and I never had a close relationship is an understatement! I was a total disappointment! I was a single mom at 16 and I will always be so very grateful to my mom and dad for helping me raise my daughter, I was a child. However, even though I went on to be successful and independent mom let me know she raised my child. When it came time for her care it was myself and my husband that took on that responsibility. I slept by her bed and would listen to her say her prayers or whisper to whoever. I think she resented me there at first then felt secure. Our relationship changed – she told me I such was a good daughter and loved me, I cried like it was the best gift I’d ever received!! I wouldn’t trade that time with my mom for anything- my brother chose not to be a part of it – but I felt honored to be able to be with her in those last moments on earth.
I’m sorry for your loss. My mother passed into the spirit realm on 2/1/2019 and I’m thankful I was there for her last breath. Mom had no strength to even talk to us but we could tell by her expressions on her face. We watched her slowly pass for a week and even caught her staring at corners of the room while we talked to her. Her last words ever spoken and only spoken for that week were to me 2 days before she passed (I love you to the moon and back Tamie), I hear that all the time and hope I never stop hearing those words spoken to me from mom. Hospice told us in the hospital on Thursday at 8am the day before her passing to call the rest of the family so they could say their final goodbyes. At 4pm Thursday she closed her eyes but every now and again I would see her open one eye, i believe she was checking to see if we were still there and I would assure her. The hospice nurses checked on her every hour and had strict instructions to wake us if her breathing changed or she passed, I remember falling asleep around 11:30pm Thursday night and waking at around 2:30am to see if she was still with us at 3:03am I heard my mother take her final breath. My sister and I sat in that room for 4 hours with her waiting for the mortuary to come get mom. The pain I felt hurt so much and to see the woman that gave me life die was heartbreaking. I noticed a lot about mom while we waited and there are days I think about my final breath and who will be with me. I didn’t want my mom to die alone and I thank GOD for allowing me to be with her as she took her final breath, I’ll never forget it, ever.
Reading your story just brought me right back to December 2014. My father’s death. Unlike your relationship with your mother (I don’t actually have a relationship with the woman who gave birth to me) I had a close relationship with my Dad.
Every time I walked off the elevator, the hospice nurses would smile and sign in relief to see me. My parents were still married and I have brothers but I was the person to calm him. He had brain cancer and the meds used to make him irritable and irrational. But my presence relaxed him. I loved that I could do that for him. However, I lived 45 minutes away, worked and had small children. I couldn’t always be there. But I went every day.
My Dad told me so many things, apologized for not being able to watch my children grow up, and thanked me for crawling into bed with him.
There is nothing on this earth that could have prepared me for his death. He was 64. He was diagnosed in October and then died on December 24, 2014. I miss him and wish he was still here every day.
But I’m always grateful about having such a loving caring father. Just wished our time hadn’t been cut so short ☹️
It made me sad to read that you were a disappointment to your mother, and she would be the first to let you know… I’m sure you were not a bad daughter. Wishing you peace during this holiday season.
I journaled every day of the last 7 months of my moms life in A nursing home . My Mom and I had a wonderful relationship ! I don’t ever remember an argument with her In my 65 years and my Mom died at 98!years old just 6 months ago . One of her last words to me were she was not afraid to die , we are all going to die but I don’t want to leave you. I have so many wonderful memories that I cherish every day . I miss her so much it’s sometimes unbearable but I just think of what a wonderful life she had and lived her life her way and on her terms . She was the most knowledgeable well read and well traveled person I knew .