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”
My dad passed 27 years ago. He went from a young 62 year old to a very old man almost overnight. They didn’t know what it was at first – thought it was a blood clot in his brain or something, so they did surgery – but it was an old clot, so that wasn’t it. After over 3 months they decided it was cancer and that he had about 7 weeks to live. Mum asked when that started, 3 weeks ago? (She was a bit of a smart @ss.) And 4 weeks later dad passed. I was in the room. I knew he wanted mum there, so when mum told me he was gone, my first reaction was “was it ok that I was there?” – and she told me it was. Dad & I had a difficult relationship due to his alcoholism, but the last month or so of his life when he was at home still, and when he went into hospital and was “there”, he was a joy to be around. I have had a lot of anger about why I didn’t get THAT dad for longer… that was the dad I should have had. My mum passed almost a year ago now. And that has been MUCH more difficult. Her health was iffy the last while, and quite a few years ago she had a stint in hospital that was 9 months long, and we weren’t sure how she’d be, or if she’d get out or go to a full care facility. Well, my amazing mum was discharged to go home on her OWN. (Take THAT doctors!) Anyway, I did all her groceries and helped her out, took her to some appointments, called her every day, sometimes more than once. She ALWAYS thanked me for calling, and it was ALWAYS my pleasure. And we said so many i love yous… She had more hospital stays, more surgeries, more struggles… and I was there with her as much as I could, usually there every day. Her last stay she’d decided she probably needed to go into a partial care facility when she got out, but then the docs were saying she should feel better, and she didn’t, so she refused to go. She was getting weaker. And finally they discovered a bleed but she wasn’t strong enough to handle the endoscopby or any other treatment to make it better. So her decision was to be kept comfortable. And she probably had at most a week left. She said 3 days. She was good to her word. Though she did ask me why it took so long. She was ready to go. Left on her terms. She had a few moments of laughs & visits with loved ones in the last couple days. And when I sat with her myself, I did tell her it was ok to go. She didn’t need my permission, but I know she appreciated it. Even though she was sleeping or not responding to me at the time. I miss her so much. Want to call her every day still. Not sure how I go on without her. I guess I am though.
Beautiful story! Thank you for sharing. Here is my story of losing a parent. I could also tell of the amazing events surrounding my mother’s death, but I will stick to that of my dad’s.
My sister and I took turns caring for my dad in his last days. My dad was the most meek, modest and loving man, I have ever known. He was a Southern Baptist minister, who had a very strong faith. He had taken care of our mother for the 5 years she had breast cancer, with having been diagnosed with Alzheimer’s during the last three years. Dad never ever complained about anything, therefore did not let us know that he was really ill (if he knew, himself). It wasn’t until he was already terminal, when we found out. Since I lived 6 hrs. away, I would go stay with him for 1-2 weeks at a time, while my younger sister lived close by and cared for him between the times I was there. We were blessed to have been together with him in the last few days of his life, and there when he took his last breath. While this was the hardest experience of my life, it was also the most rewarding. I felt God at work in the whole situation, just as I did in my mother’s last days. Knowing my dad’s future is what kept me focused on the beauty of his leaving this world. As he sang, “Oh How I Love Jesus” and spoke of how much he missed our mom, his mom, dad, brothers and sister, I could not help but be happy that he would soon be reunited with his Lord and loved ones. Even with all the agony he physically experienced and the exhaustion that I experienced, I would not have traded those last weeks with him for anything! I was blessed to be back home with him those last few days to not only experience the most disgusting and heart-wrenching times, but also the most beautiful times. Lying in bed with him, caressing him, stroking his hair, scratching his back, holding his hand, and laying my head on his chest, all while he repeatedly told me how much he loved me….that was heaven on earth, to me! I will end on this last note of blessing…As dad took his last breaths and prepared to be ushered into the arms of Jesus, I was blessed to sing the song he had been passionately singing every night the past few nights…”Oh How I Love Jesus”! As, I ended the song, dad softly closed his eyes and took his last breath.
Wow. That was so heartfelt and so very true. I lost my mom 14 months ago and she was my best friend. I miss her everyday. Thank you for your words. So articulate and on point
This was me. My mother passed on July 4, 2019. It was swift. From her diagnosis of stage 4 colon cancer until the day she took her last breath was a short 2 months. There were moments I sobbed. Whwn I wasnt there she would ask how I was holding up… still the mother concerned about her child. She was an amazing woman and I truly miss her.
Thank you for sharing your story. I was with both of my parents when they passed, holding their hand, hoping they knew how much I loved them. It was the least I could do for all their love and sacrifices on my behalf.
Both my parents died of cancer. Dad went quickly once us kids were all there. He began slipping into a coma on a Wednesday, Thursday was given his last rights, and Friday night, a few hours after we all were there, went on to his next journey, as we surrounded his bed, I held his hand and laid my head on his arm. He knew we were there and had one brief period where he spoke to us, and I was so grateful that he knew we were there.
Mom went much slower and my younger sister and I worked with hospice for days before calling our older, out of state siblings to come. She still hung on for a few days, long enough for us to open our presents on Christmas eve. It was the last time she was lucid. After that she slipped into that place where she walked between worlds, seeing loved ones who had gone before her, packing her suitcase for her “trip”, then coming back to let us know she still knew we were there. We took shifts in pairs watching her so that we could all get 2 hour stretches of sleep, if sleep would come. Again, I was holding my mom’s hand and resting my head on her arm as she made her final exit. I remember the guttural cry that came from somewhere inside me as I realized when each had taken their last breath. The excruciating pain. But I wouldn’t have had it any other way, and would do it again if there was another parent. I still miss them every day. I see in the mirror how I am looking so much more like mom as the years pass, and see my dad in my oldest brother’s, youngest sister’s, and even my daughter’s features. I love and miss you always, mom and dad.
I was my daddy’s caretaker. He died of heart failure 5 months ago. The very few quick days of his passing seem like it is still yesterday. I watched, stood watch, slept and didn’t sleep or rest all the times I should have bc I was worried I would miss that moment. We still have my mom and enjoy my time I have now w her in a different way. We mourn our losses separate and together.
I go to counseling and chooses not to. For now, wounds are still raw and sleep is sporadic when I can relax but I don’t go one day without my thoughts being of him, about him, his life and my life as his daughter which is all good memories but I don’t want to forget. We shall all heal together somehow.
I lost my father on 2/29/2016. He lived a full life even right before his death. He had survived, colon cancer, double knee replacement, skin cancer, quadruple heart bypass, and had congestive heart failure in the end. He died gracefully in the last 6 month of his life. He never complained and always tried to keep us is high spirits. In the last week of his life his hospice team said my mom couldn’t be alone with him. So I was there till the end. I wouldnt give that up for anything in the world!! I consider it a privilege!❤
My mom and dad were always fighting when I grew up and never stopped as I moved out as a adult. My mom didnt always treat my dad kindly. Not even in the last days of his life. I truly think she was dealing with the fact of him dying with denial. Anyway, I think she has TONS OF GUILT now and wants to die. So since 2016 I have been trying to deal either who has had depression her whole life, but will not medicate. I have a sister in AZ and 1 in Iowa. I am 1 he away so have done all the running for them when they needed it.
It is just So So Sad that she is living her last years/days in such misery of her own doing. I go every other weekend and listen to her complain. I dont talk back as that is how I was raised. It is called respect. I know I will miss her greatly, she is my Mommy!
Thank you for sharing. My mother passed away two months ago and the things you said are pretty spot on. There are things I wish I had done better and things I wish she had been able to tell me. I wish she was here for me to sit next to, to take care of, to talk to, just for one more hour, but that would never stop. It would always be one more. When the cancer finally took my mom it was a relief as much as it was heartbreaking, and that sense of relief is heartbreaking in itself. It makes me feel guilty. Tremendously guilty. I miss her every moment of every day.
I sat with my father as he took his last breaths in his room at home. I held my six-week old baby on one arm and held his hand with the other. It was the most profound and difficult privilege of my adult life. I am looking forward to being with him in heaven one day.
My dad passed away at 56 years old. He was strong he was healthy as a horse, yet at 52 years old he was diagnosed with a brain tumor. Less than 3 years later we were told that he was dying. I was 36 years old and the mother of 2 children ages 9 and 10. How to tell them that they were losing their poppa. I am a nurse a caregiver by nature. Sad moved back to our hometown as that is where his kids and grandchildren were. We took care of him as he lost his ability to walk or talk. My brother was due to have his 1st baby dad was looking forward to it. Baby was to come March 26 on March 25 dad started having violent seizures and his brain herniated and he lapses into a coma. Baby came the next day and within hours of his birth we had the baby laying in dads arms. Dad didn’t actually pass away until April 1st, I sat at his bedside and helped the nurses with his cares. It was the hardest thing I have ever done. I miss my dad terribly but will never regret all the time we had together and the memories we made.