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”
I to lost my mom 1 1/12 ago. The memory is raw and I cry still thinking about it. She would scream at night about them coming to get her and she wasn’t ready to go. The stuff she would say about She wished she did more. It got so bad her pain that she had to go to a hospice hospital we couldnt control her meds well at home. I remember promising mom that she could pass at home and when I couldn’t make her comfortable I prayed I was doing the right thing for her. Hospice assured me I was so off to hospice hospital we went. 7 weeks she was home then 7 days in hospice. We stayed the whole time sharing shifts between 4. I never left the whole time. It was the hardest thing I have ever had to do but at least for the 7 weeks mom was hone we had a family reunion, did stuff she wanted to do, and played cards and laughed. I miss mom , her everyday phone calls, some of the funniest things she would say. . Someday I pray she will greet me and I won’t be afraid.
I lost my dad 6.5 years ago and some days it feels like yesterday. One of the things i regret is having erased a voicemail from him. I thought there would be more time. I love the time we had together as i sat nights at the hospital with him and then later in his home. In his last days i remember him saying he loved me and he would see me the next day. I didn’t want to go home because i knew time was getting close but i needed to go home to take care of few things. I text during the night to check on him and was told he was sleeping peacefully. Dad never woke back up i keep wetting his lips down hoping that would help i wasn’t ready to loose him. Two dads later dad passed i wasnt there with him and i have kicked myself for not being there. My son at the time was in kindergarten and we got back to the house right after he took his last breath he looked at me and said “you should have done CPR and he would have been fine.” I know that couldnt have saved him but there is know way to explain that to a 5 year old. I was a daddies girl and have never faced anything so hard in my life.
I’ve been taking care of my mother for 13 years she has a rare muscle disease and it was hard some days but we grew so close I would call her at least 3 times even after I was at her house all day. Last November she was diagnosed with stage 3 small cell lung cancer and every 3 weeks we would go and she would get treatment in hopes she would have good reaction to the keytruda I guess the hardest part was the hope that she’d have more time I use to tell her I couldn’t see a world with her not in it and that she was gonna live forever then she broke her foot and things changed the keytruda was no longer working and it was time for hospice and we we thought we would have 6 months we had 1 and it was the best month we had in 2 years. But everyday my heart is broken. Everyday I wake up thinking it was a bad dream til I see a picture and realize it isn’t I can’t explain the emptiness I feel inside or the emptiness my children feel because they lost their best friend.:..
Your story is beautiful, hard and encouraging. I am going thru this right now with my mom. She has Alzheimer’s. I repeat things to her. I share her memories, live her truth. I cry when she cries and mourn that I am losing her. I am watching her go away while she is still alive and it is so hard. I watch her sleep, show her pictures of her grandchildren and great grandchildren and she doesn’t know them. I cherish the few smiles she gives me and I am excited when she seems to know who I am. I have plenty of resources and a therapist who are walking thru this journey with me. It’s weird, it’s the hardest thing to do, but I am honored to be there for her while she is dying. I will miss her terribly, but what I have right now is to be treasured.
I too watched my dad die. I watched him go from an independent sharp as a tac no filter funny person to a shell. Skin and bones. Couldn’t remember simple tasks. Wouldn’t eat. Wouldn’t take his meds. It was absolutely heartbreaking. I was mad he wouldn’t try treatments. I was mad because I felt he was giving up and I wanted him to fight. I finally accepted his wishes. Never liked those wishes. But accepted them. I sat with him at the hospice his final days. We’d talk about the game shows he loved watching and we’d sit and say nothing at all together. I miss him every day. My heart will never heal
Thank you for publishing this article. I just spent the last 2 years caring for my mother who died this past September. She had ovarian cancer for almost 5 years and I had breast cancer during this time too. We went thru chemo at the same time and it made me so sick. It didn’t faze her tho and she cared for me which is the last time she was able to take care of me, her baby. So we had a unique experience in that aspect and as she became more and more sick I would often think about her caring for me those few months and how she never would again. It made me want to take such good care of her, to thank her for that. Prior to my moving in with her we had lived 250 miles apart for nearly 35 years. She had become a very independent woman after my dad’s death 24 years ago and everyone who met her or knew her loved her. She was a godly woman who I can only pray I’m like in some way. We’ve never been particularly close tho I wished we were. I was closer to my dad and she was closer to my brother. I have regrets about things I didn’t say or do during my life and especially these 2 years but I know she knew I loved her and I know she loved me. I now live in her home with my youngest son and that’s hard. Being surrounded by all her things but without her. I try to clean closets and things but it gets overwhelming. I know I’ll see her again someday but in the meantime I just hope she did feel all the love I have for her. I too would watch her sleep and examine her hands or face for what looked like my own. I tried to find out more about her childhood and if she had any regrets about her life. We never had deep conversations and that didn’t change during these 2 years. I’m sorry for that now and there wre days I was so sorry with her. That’s what really bothers me now. I don’t think I was as kind to her as I should have been or could have been. I wasn’t mean, just indifferent at times. I never fully got the chance to deal with my own cancer and I think I resented her at times. I left my whole life behind to take care of her and I would do it again but there were times I did resent it. I ended up losing everything in my former town and I’m just now coming to terms with that. I didn’t blame her but I did harbor bad feelings about why it was me that had to give up my life and not my brother. But like I said now I do not regret one minute of the time I got to have with her. I see it as a blessing for me and an honor to be here for her last months of life. I had always tried to be as different from her as possible because I didn’t see her as having a very fulfilling life and I didn’t want that. But now I see she was very happy. A very uncomplicated woman who grew up in the depression and was just happy to have anything. She was one of 13 children and had to take on lots of responsibility at a very young age. She had a work ethic you wouldn’t believe and after retiring at 62 went on another job for the next 20 years. She was working a full 40 hours a week when she was diagnosed in 2014 at the age of 81. She could do anything she wanted but she only had a high school education. But if she wanted to do something she did it. She would try anything. She loved to cook and garden, she played the piano and sang,
and she could paint and make anything. I have learned a lot more about her since she died and I hope I always learn things about her. I now know she was a very accomplished woman and I’m so proud to be her daughter. I just wish I’d realized sooner how wonderful and special she was. And I hope my 2 sons think I’m somebody special too and not just mom.
I’m so sorry for your loss…..I could feel each moment you described as if it was happening all over again with my mom and I. It’s been almost 4years since my Mom passed. She suffered for over a year with stage 4 metastatic lung cancer. I did all I could for her. It was my pleasure to care for her. My step dad died suddenly 4 1/2 months before my mom. Having this happen was very hard on all of us. I’m thankful for every moment I shared with my mom. Thank you for being so honest in all that you shared. I know your mom was blessed to have you by her side. Bless you!
I lost my mom June 25, 2019. I miss her every day. I had been taking care of my mom for about 3 years. She lived by herself, but needed someone daily the last few months. We just knew for 1 week before she died, she had lung cancer. She had gone to the ER by ambulance because her oxygen level wouldn’t go up, and she couldn’t get her breath. I asked the ER doctor if he would order a CT scan for her chest. She had worried something was wrong with her heart after having shortness of breath when lying down at times since she had a heart attack 4 years before. After doing the CT, they found she had a huge tumor behind her heart. The x-rays wouldn’t show it. I can’t stop seeing her face when she told me she had cancer. She was terrified. She had stopped smoking 30 years ago. As soon as the oncologist talked to us, letting us know there was nothing they could do because of the extent of the cancer, we called hospise. They were awesome. She got home on a Friday and passed the following Tuesday. Because I had been taking care of her, she didn’t want me to leave her. I was so exhausted but afraid she might die when I wasn’t there. We were blessed that her mind was with her until the last few hours before she died. She had her sense of humor and had some good talks with her younger sister. The last day was the hardest. She kept sitting up in the bed saying, I can’t breathe, I can’t breathe. It broke my heart. I didn’t leave her side as she took breaths farther and farther apart. Then she was gone. I couldn’t cry. I didn’t cry at the funeral. I had cried before she died but couldn’t after. I realized that night, I don’t want my children to watch me die. The empty body that was there after her last breath, it wasn’t her. So much I didn’t say or ask her about! We were so close, but the end happened so quickly. I do know I was there for her, I was patient, and our roles had been reversed for a while. Spending time with her meant everything to both of us. Her NP that came to her home had ordered numerous x-rays of her chest when we had told her about her shortness of breath and raising heart beat. If she had ordered a CT, the tumor could have been found sooner. But, in my heart, it was best she went quickly and didn’t have to be scared or suffer any longer. I’ll always miss her.
I still feel the pain of losing my Dad in October of 2018. We lost my mom his wife in 2009. We were such a close knit family. They were married for 57 years. I became my Dads care taker after the death of my Mom. My Dad and I were always so very close. We found out he had a brain tumor and 18 days later he was gone. I was right by his side holding his hand when he passed. I still struggle each and every day since he has passed. Losing your last parent is the worst feeling in the world. It’s also bittersweet knowing that they are together (so we hope). I am here to tell you that partners do meet up again in heaven. A few months after my Dad passed I went to bed. Just as I was getting ready to fall asleep I saw a man coming to my bedside in a tan robe and he reached down and started rubbing my leg. I couldn’t make out his face. I was not afraid at all. I then saw an a angel come towards me also. She step in front of the man, he put his arms around her…..at that time I saw my Mom and Dad standing there. I always worried if my Mom would be waiting for my Dad and she was. I still today grieve the loss of my parents uncontrollably. There is such a huge part of my life missing. I’m not afraid to die because I know they both will be there waiting for me. God bless those who have ever lost loved ones. ❤️
Been there, done that, but never been able to put my
Experience into words. Thank you for your excellent article on the subject…of dying. I find it especially interesting in that I am the one for whom the bell tolls. I have been there for my parents, there parents, my wife, and my daughter. Currently I am estranged from my son who is the only family remaining whom I could envision attending my internment. Sad, but realistic. Perhaps a reckoning? Thank you!