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 lost my Dad on July 20, 2019. His loss has devastated me. I was able to be there for him throughout his illness and also was next to him as he died. There is never enough time. He knew I loved him and I know he loved me, that is enough.
What no one talks about is the dynamics of other friends and family who bring their dysfunction into the process. The one dying gets to decide how they want things to go. Remember to make it easy for them which may make it uncomfortable for the caregiver. Keep their boundaries sacred.
Grieving is exhausting.
I lost my mom September of 2018. I was just like you described. I was Hard and Ugly and Heartbreaking. But I feel the same as you . We promised my mom we would Stsy with her until the end . And we did!! As it’s coming up on a Year the bad memories are beginning to Fade and the Giod are working their way to he suface. The death of my father 16 years ago was so different. Each person is different. I Believe my Mom felt our presence and Was at Peace even thought her body fought it. Love to all the Families left to Continue our journey and much love to our parents to are no longer with us! Thank you for a Beautiful Post!!❤️❤️❤️
I lost my dad 6 months ago on February 25th. The pain is so real and raw. I still dream of the call to come to the hospital. I was in shock, the 2 days prior he was doing so well. I think that was his “rally” before he needed to go. I miss him so much. He was intubated and was unable to extubated and maintain his own airway, I was talking to him in his hospital room and he was nodding to my questions. He had nodded the he wanted to be with his mom, which had been deceased for many years, I was crying and told him that I understood that but that I just wanted to hear his voice one more time, so the next morning he was able to be extubated and back on to regular O2 at 6L. I was in shock, I couldn’t believe it. So that Friday night and all Saturday he was my same old pops, my cousins went back home to CA, they moved him out of ICU, I was breathing a sigh of relief, I thought we were on the home stretch. I thought he would be coming home soon, but by Sunday afternoon he was a whole different person, he had a horrible night, not breathing well, unable to get a stable blood pressure, hallucinating, I just couldn’t bare to see him like that. I was going home, I knew they were going to send him back to ICU. I had my mom keeping me posted, I knew this wasn’t good. I had worked in adult care for years. I was suffering from a bad migraine, reaching out for prayers from across the states for my pops to pull through this. I was talking to some family members from MO, laying on the couch so I could let my husband get some sleep, then my mom called me and said that I needed to call my siblings and kids if they wanted to see my dad, and that the kids could bring their kids. So I asked my mom “is he dying”? She said yes. I absolutely couldn’t believe what I was hearing. I lost it. I went in my room, scared my husband with my freaking out saying my dad is dying over and over again. Then having to make those phone calls. I still relive that day. I don’t think I’ll ever forget. I got a memorial tattoo just a couple of weeks ago. I think about him every day, wishing I could talk to him. Hug him. Tell him I love him! Of course, I do tell him I love him every day. I have a dog tag that has his picture and a red, white and blue heart with his ashes that hang from the mirror of my car.
Timothy Phil Conway Sr 3/25/1948-2/25/2019 As Long As I Breathe You Will Be Remembered!
I was thrust into this train wreck with my moth in law because of pancreatic cancer … it was so brutal and fast. My husband, an only child, falling apart, gave me 4 fronts to deal with, our mom, his step dad (who had dementia that quickly became Alzheimer’s ) my husband and my own…the only death I had faced was young and sudden. This was torture… I found the experience Ethereal … if it weren’t for my God… whew… to have a woman you’ve known for 34 yrs die in your arms… almost too much
As I sit alone in my kitchen reading your post, the tears come rolling down. It has been 4 months since I have lived the very same experience as you and I am comforted in reading your words, in knowing I also did the best I could. I am grateful for the last week I spent with her in her journey to another destiny. Like you, I observed her face as she slept, her hands, her blind eyes, her legs, massages her feet and her aching stomach, stroked her forehead, prayed with her, sang to her, laughed and cried with her, laid my tired head on her bedside for her to still care for me like the child I still am to her. It was a privilege to accompany her on this journey! Thank you for letting me begin to grief and share my pain and my joys of this incredible experience.
I lost my Father a number of years ago, but more recently I lost my husband after a rather nasty battle with prostate cancer. I experienced much of the same and while I felt a bit guilty when all was over I also felt a tremendous amount if pride in the manner I was able to be present and assist my husband in his final hours. He was at home surrounded by things and people familiar and we walked those last miles of his life together. While I sometimes worry if I told him enough how much I loved him, I do know in my heart that he knew this and that I was there fire him.
Be proud of what you did for your mother in her final hours….that makes up for anything you think you should have done differently in earlier years.
I’m sorry for you.I do thank you as I’m watching my mother die slowly of renal failure. this past sat. I sat with her and als put my head in her lap and she stroked my hair– I didn’t cry but I find myself busting out in tears alone -hyperventilating-as I
feel i’m dying with her..i want to be with her every moment and when i’m home I want to find any destraction I can not to think about her and the last thing is my personal acceptance- one year ago I would Never let her go– now I just want her pain o stop- she’s suffering..thanks for listening– sorry for all the miss spelled words….
I had a similar experience 6 years ago. My mom passed away quietly in my home after 18 months of cancer. I felt privileged to be with her at the end as it was the most intimate experience, almost holy. I didn’t want anyone to take my place at her side
I was not present for the passing of my parents.
My father died when I was 12 years old (1970) and my mother later in life (2006), both to cancer. My mother shielded my brothers and I from my father’s illness as much as was possible. The memories of my dad prior to his passing are still haunting. When healthy, he was a big, robust man. The cancer and “treatment” had ravaged his body and he was so frail. I believe my father came to me when he passed. The night he died in the hospital, I woke from a dead sleep and sensed his presence and knew he was gone. My mom, lived in another state at the time of her illness/passing. My family and I visited her the summer prior to her passing in September. The cancer/treatment had taken the same ugly toll on her body, although she tried hard to mask the effects and pain. I knew in my heart it would be the last time that I saw her, and it was. One of the hardest good-byes of my life.
Fast forward decades. I married into my husbands family nearly 40 years ago. My in-laws were a huge part of our life. At ages 93 and 89, they lived independently for the most part in their home. My husband and I were the only family members living in the same city and as they aged, much of their limited needs fell upon us. My father-in-law, at 93 years young, had been amazingly healthy until November of 2018. He was diagnosed with liver cancer and was gone 2-weeks later. He passed in his Hospice room after we (myself, MIL and SIL) had stepped out for lunch. My FIL was the primary caregiver for my MIL. Besides being a very “strong” personality, she had numerous health issues (COPD, A-fib, Macular degeneration, arthritis, on and on). After my FIL died, we had to quickly move my MIL into an assisted living community. We held an estate sale selling most of her possessions and family home. It was difficult. She did well for several months but become increasingly depressed and experienced anxiety attacks, and falls resulting in frequent ER and hospitalizations. In July 2019, she passed during the early morning hours while in a skilled nursing facility with no family present. Both passed within 7 months of one another.
I experienced a totally different aspect of “end of life” with my in-laws. Death is ugly, raw, and hard to watch. I loved my in laws, but differently than my own parents. I was able to help them, my husband and his siblings through the death process. I could NOT have done it with my own parents and here’s why. I truly feel that for some individuals it is easier to transition from this world to the next without loved ones physically present for that last breath…easier to let go if you will. I just want others who were not present as their loved one passed and perhaps harbor guilt or regret to know, it’s ok. I know for me personally, when my time to leave this earth comes, it will be much easier for me to transition without loved ones being physically present, I would try to hold on. I do not want my family to hold my last breath and heartbeat as a memory. But rather, the love and life that we shared.
Well written, so true.
I’ve learned many lessons in the passing of both my parents. Death is a process. My father would say, “it took nine months to get into this world I’ll take nine months to get out.” And he did just that. Nine months after he was diagnosed with cancer he passed away. My mother died a private death. I watched as she mentally prepared herself, as her body slowly shut down, it took two months.
My mother-in-law died on her terms, she lived her life on her terms and she died on her terms. I have witnessed the passing of these three remarkable individuals in the past five years and it has changed me!