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”
I buried my mother 9 days ago. I am lost to say the very least. As I watched her struggle to breathe, I kept thinking that I could not sit and watch this. This was too painful because I wanted to breathe for her. In the back of my mind I thought I heard a voice tell me that she watched me take my first breath and I should be there for her last. I did and here I am now, lost. How do I go on, when will the tears stop, when will my appetite come back and when will the pain stop?? I’m struggling so thank you for your story because I needed to read this today.
Much Love
Deborah
My mom just passed away and into Heaven on December 18th. My heart is broken.
My mum passed away Christmas Day 2021
Can’t come to terms with it
I lost my dad 9 weeks ago & it still breaks my heart. My sisters & brother & I were with him when he took his last breath. He was struggling to breathe the last 6 hrs, unconscience from the morphine hospice had supplied us in his home. We sang to him, talked to him & prayed for him. A friend & grief support person had just called me & advised us to make it a smooth, relaxing experience for him because we had all been crying out loud pleading with him to go. After the call, we each went to his bedside, held his hand, & told him that we were all going to be ok & that our spouses would forever take care of us as he was always worried for us to be happy. Once we told him that & comforted him, he took his last breath. See this grief person told us that the dieing are struggling with this life & going to the next life & they are going through their whole life in those last days, hours, minutes. I am forever grateful we were there for his passing & he was not alone or afraid. He was 92 & lived a long, goid life, but the last 4 yrs were hard on him as my mom passed 4 yrs ago, making me & my sister living nearby his caregivers.
Bless you and yours as we complete this circle of life. My mom is currently in hospice care and I try to make her talk about everything that I can think of. I record some of it. My mom’s sense of humor hasn’t evaporated. We laugh so much. I will forever be honored to be with her now. The videos are sometimes hilarious, sometimes frightening, most often comforting. Bless you all for being there. xo
Thank you for this. It is on point and describes very well that loss. I’ve lost both my parents. My Dad in September of 2010 at 85 and I saw him steadily decline. It’s crushing and painful. I lost my Mom in March of 2013 quite unexpectedly as she was feeling okay at 81. It’s unexpected and devastating yet no less painful than my Dads passing.
I lost my husband in November of 2014. He got sick from Nonalcoholic cirrhosis, also referred to as NASH, in August 2014. It’s the most painful traumatic thing I have ever experienced. It was August 2014 and then on November 2nd 2014 he was gone. He suffered greatly and was very weak. This one I still struggle with 7 years later. My life stopped when his life stopped. We were supposed to grow old together. I am lost without him. He was only 64 years old. Love them while you can. Don’t wait until tomorrow because tomorrow may never come.
Well it’s coming up on a year my mom passed… I’m just now realizing the hurtful milestones I’m about to go thru.. visited her last thanksgiving while she was in nursing home.. still remember her laying on a hospital bed enclosed in a plastic tent due to covid.. I was not able to touch her, she was unable to communicate but I could tell by her facial twitches she knew I was there… December was hell as I was told she had covid.. the end of Dec-Jan I was told she was moved to covid recovery room.. Jan 2 her bday I was not able to bring her her favorite vanilla cake.. Jan 6 she was not able to celebrate her only child(me) bday.. Jan 7 I received a call from a nurse who ask me to come to the nursing home.. it was 10pm I had to leave my then 8 year old daughter with a friend, she was not allowed due to covid… I arrive.. momma is on oxygen.. I sat and sing to her( she loved music) it still didn’t register to me she was taking the death breaths..I left and returned that morning… I sang still not registering to me.. I left to be with my daughter.. I got a call my moms bp had changed.. sang to her and it finally registered to me “she’s dying”… I had my talk telling her it’s okay to let go, I’ll be fine and her grand baby Harley loves her… I left again to be with my daughter.. still thinking “I’ll go back later to see momma again”… by the time I arrived home took off my shoes I got the call” your mom just passed”… I always knew in my mind things I’d do.. mommas arrangements were pre made and paid for…but I couldn’t move.. during the funeral before the casket closed.. I let out the loudest most gut wrenching cry.. none of my friends had ever seen or heard me cry… see I took care of my mom for 10-12 years before she entered nursing home.. I don’t think people know the things a caregiver does .. cleaning feces, trying to bathe a person who doesn’t know you one minute but the next they trust you, being hit or bit because Alzheimer’s causes fear.. trying to work / raise a daughter at the same time.. trusting others to cate for her a few seconds while I got things done, having to shut myself in the bathroom sometime because of anger and hearing my momma tell her only child she didn’t know me.. finally having a baby at 40 but my mom didn’t realize and couldn’t celebrate.. all these things came out in my cry.. what I didn’t mention I’m an only child, my mom was the only child and so was her mom.. my family is very very small.. and I lost my best friend… I’m trying to make it thru but at times I look at myself and see her looking back at me…didn’t think I would be affected but I feel myself thinking about our memories… miss you momma ❤️
My dad had Alzheimer’s and got Covid as well in his nursing home from a caregiver. It was hard because we couldn’t see him from March 2020 on til after his death because that was when Covid first became known and there were no visitors allowed in the homes and he got Covid in June 2020. He was hospitalized, but passed nine days later. We were not allowed to see him in fear of transmission of the virus so there were no goodbyes said. He deserved a more peaceful passing as he was one of the most hard working men in his day… My father-in-law passed two years prior and he had a more peaceful passing, and we were able to say our proper goodbyes. So I get both sides of not being able to be there and then the blessing of being able to. As emotional and draining it can be to be present, it is good to be there for your loved ones as much as you are able to. Thank you for your telling your story and god bless.
I was at my mother’s bedside on her last day. For many hours, I sat and watched her sleep, listening to each breath. I studied her face, committing every detail to memory. As evening approached and needing a break, I walked out of her bedroom, meeting my brother in the doorway. Within seconds, he appeared and told me that she was gone. It was as if she had waited until she was alone. During those brief seconds, as my brother made his way to her bedside, she passed into eternity. I will always believe that she chose to spare us the pain of watching her take her final breath. A mother’s love…indeed.
I’m reading this as I am sitting in a chair next to my mother Bad as we are in a hospice care facility. They are not expecting her to make it to Christmas. He gives a lot of time to think about the good the bad and the ugly so to speak. I’m blessed to know that my mothers last words to me were I love you. Truly a journey to this point and a learning experience. Thank you for sharing your story
My Mother passed 7 months ago. Me and my niece and my cousins wife took shifts with her. My Dad passed 6 years ago in September. It’s been the hardest for me, (I have no children) So needless to say I think of her everyday because in my heart….she’s still here wit me.
After 15 hard years of helping mom during her complications from arthritis, medications, shoulder replacements & other operations, falls, broken bones, heart failures, COVID hospitalization, and lastly cancer (that started as a tiny red bump on the back of her thigh)… my mom of 86 years just passed away before Thanksgiving. Watching my mom/best friend pass away was the most difficult heartbreak & loss I have ever felt.
My mom was an amazingly strong, beautiful woman who survived living in caves in Italy during the war
& came here with nothing. She was the best Italian cook & taught so many girls her recipes & so much more! She created a beautiful home, raised 5 children. She worked hard all her life and gave more of herself than anyone I know.
In the end, the stress, worry, and lack of sleep for me was just incredible and I don’t know where my mental and physical strength came from to keep doing all that could be done for her, but I knew she deserved all of it!
It really hasn’t become completely real that she is gone, but I will survive in part by carrying on her traditions & keeping my father going through all of his loss. They were married 65 years,
I am thankful for all the photos, videos & voice recordings of Mom that I made over the years. They are priceless to me now.
We all need to give ourselves permission to put this pain in the past, to rest & heal so we can continue our journey to help & carry each other until our last breath.
Strength to you all.
Thank you for the reminder to keep going .
I have been through this journey with my parents and my husbands parents. Also a dear Aunt we took care of. Even though it is a hard time in your life it also part of the healing from loosing them. My fathers death stands out to me the most because he was the first of our parents to pass. At the hospital there were so many people in and out of his room, his brothers and sister, grandchildern and of course all of us. But at the time of his passing it was almost like he was waiting just for that moment because the only ones in the room with him was my mother and my sisters and me. My mother said its okay to go , we will be okay and he took his last breath.
Mom is now palliative. It’s been a long and heroic battle with various health problems but in the end it’s the cancer that’s going to get her. Your blog is so beautifully written. It’s made me bawl my eyes out and yet I’m sure it gave me strength too, to deal with the present and what’s to come.
Much love to all
God Bless you – this is a very well written piece that really resonates with me. We lost Mum 35 years ago to cancer and her death was horrific – she fought and it was anything but peaceful – that memory has stayed with me …she was only 51…
My Dad sadly passed a month ago and his transition from life to death was very different and very peaceful – for that I am eternally grateful. We were all with him, my brothers, his wife, immediate family – talking to him, but sometimes the stillness that you mention , and playing some of his favourite music in the background …if death could indeed ever possibly be classified as good then I feel my Dad had a ‘good death’ – he was 87 and had had a long and very happy life.
I am able to look back now and feel that as a daughter I was in many ways fortunate to have been able to have cared for both of my loving parents in their final months, weeks, days and hours of their lives.
The loss of both parents is hard and I am endeavouring to adjust to life as the grieving process continues. Memories are forever and reminiscing often just in my own mind, of happier times, brings peace – something we all need much more of
My father saw his deceased brother, sister, and his chdhood dog. He talked about them a few days before he passed. He also said that Jesus was with him. They come in the morning he said. These words were spoken early Monday evening right before we went (made the difficult decision) to go to hospice.
Once in hospice I sat next to him for 2.5 days. I did go home at night and he passed in the morning without us there. They said many wait until family is not there.
While under the morphine he heard me. I talked to him and he squeezed my hand and even smiled.
You’ve written my story. For the past 1.5 years, my sister and I were our mother’s caregivers. I had just moved back to my hometown when she was put under hospice care. After her passing on August 29, I’m now unpacking boxes. There’s so much more, too much to type. It was an incredibly hard experience, physically, emotionally, spiritually …wouldn’t trade it for anything
My mom passed two years ago. She was in our little home in Maine where we were brought up. My sister and brother were there also and we were taking shifts to make sure that she did not die alone. At one point the electricity went out so we lit a kerosene lantern, put extra wood in the kitchen stove, and all sat around mom’s bed reminiscing. Early the next morning, mom went to be with our Heavenly Father. Even though it was a sad time for us, it brought joy to our hearts, knowing that one day we will all be together again. A very special time was spent together.
My daughters and I spent my moms last day in her bed with her, in her room, in her home. As she wanted it. She declined so quickly during her last day. I am so grateful to have been there with her, I missed her the second she was gone.
thank you for this I just lost my dad, thank you for sharing
i enjoyed your article / I can relate to much of it.
i was my parents caregiver since 2013; Dad passed Nov 2019, then mother March 2020. It’s been a long depressing time of mourning.
I thank you for sharing your experience. Much of what you said was true. And I couldn’t do anything to change the outcome. Dad was holding her hand when she passed away. He woke up right at that minute. Unfortunately she was dealing with her own journey and dads dementia at the time. Hard to hear dad a month later asking where she was. He died at my house 5 months 10 days after her. He didn’t know me at the end. But his eyes were so sad. I know they’re dancing in heaven and enjoying being together once again.
Reading this story was like standing in front of a mirror . Every single word written here, I lived it with my own Mom . Now, here I am more than 2 years since she passed, and I’m still living it…Larry