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”
It was the most painful week of my entire life. Learning on a Saturday night (a 6 hour drive from my parents) that my dad had a Glioblastoma brain tumor and I had to get there right away. Rushing to my dads bedside from Phoenix to San Diego was so stressful with two tired confused kids, their father worried and mom well I was a disaster. Recalling weird conversations with my dad weeks leading up to this news (he was reminiscing about my childhood – how did I miss this sign? Something was so wrong). Arriving at the hospital to see family, co-workers, friends and realizing that I had arrived with so little time that my dad was so tired I barely got any quality time with him has left me in a depressed state of mind for the 14 months since he passed. The following morning it was Monday dad was going into surgery we laughed we joked we cried and God were we so optimistic. Had we only known we didn’t stand a chance this is not most aggressive cancer there is presently. Dad made it through the surgery but the tumor ravished his brain, the chances for a recovery were slim but we marched on. Tuesday came with great expectations. My children visited with grandpa and he showed some responses with a few words here and there but mostly exhaustion. Tuesday afternoon after all had calmed and everyone visited I was instructed to go take a shower to eat to rest and Boy this was hard. I left my mother at the hospital and she was instructed to call immediately if there was any changes good or bad. She did not call so Wednesday we went back and I was feeling relief that dad was going to pull through and we would have that time we didn’t get boy was I wrong. My son all of 10 idolized grandpa was standing across from me at dads bedside when he told grandpa “Please get better I can’t wait to go fishing with you again”. This was the most gut wrenching moment ever… grandpa gently tilted his head to my son his eyes were closed he squeezed his hand so tight my son looked like he would cry from the strength and the pain and a soft release came a grunt and that was it… not another word was spoken. Not one more deep loving kind word would leave his lips for us to hear. Just a grandpa holding his grandsons hand knowing this was his only way to tell him he would hold his hand forever all his life. His brain quit at that moment. I had my husband come take my son out and eat leave the hospital while me my mom brother nd doctors talked about what was ahead. My mom and I would stay with dad till the end. He held on all day Thursday while friends came to say their final goodbyes. It was horrifying to deal with the loss they were feeling as much as us. Fast forward to my break away to shower again rest and come back. The decision for the morophine drip to be held off was made so I could gather myself. When I returned to the hospital I instructed the nurse that it was time to bump his drip up as everyone had said there goodbyes and we were ready to walk this dreaded walk. She told us that it would be only a few hours. God was she wrong. My daddy as brain dead as they said was not ready to go. He was fully maxed out on the drip any normal man would have gone in an hour. He held on we listed to music, he suffered with horrible hiccups and heart racing that could not be explained. He had tears dripping from the corners of his eyes but zero activity till my mom would lay her head on his chest and his heartrate would skyrocket again. It was a little after 1130pm on Thursday night and we were both holding his hands praying (I gave him his last rights as the chaplain was busy in another room) and his heart stopped the monitors flatlined and we cried. Then as if he said “No Damn Way am I going” his heart shot back into action like he never had a drop of morophine, this happened again 10 mins later and my mom looked at me said I need a break told daddy she loved him and she would be back in a few minutes. 7 mins later two sad songs and the last things I would say to my daddy alive were “I promise to take care of your grandsons, grand-daughter and mom, I will be sure they are always ok, I love you daddy and its ok you can go home now”, and with that heartbreaking mind destroying moment in time he finally let go. I have not had time to come up for air and process losing my dad 14 months later as I had to handle everything afterward. I believe that sharing this will help me too. I know one day I will do this again with mom and I pray it is more peaceful.
My mom fell. After that, she was in the hospital and through rehab 3X. My younger brother and I live out of state. My older brother was about to be homeless, so he moved into mom’s house. My husband and I and my younger brother visited her in the nursing home in Nov 2015. My husband said she was”failure to thrive” and would die if we didn’t do something.
My parents were divorced but friends. My dad had dementia and lived about 1.5 hours away from mom’s house. When we were about to leave, I told my mom I‘d try yo get a job in her state so I could be nearer to help. Mom stared off blankly and cried. We told mom my younger brother had cancer. I’d hoped that would make her rally. But instead, she gave up.
The nursing home sucked, and mom wanted to go home. I thought my older brother could help her, home health and providers could visit her and she could get “Meals on Wheels”. Instead, my older brother barricaded both
of my parents in mom’s house. Mom received no care.
I called Elder Abuse and of course, no finding. Eight months after my mom moved back home, she died alone in her bedroom. My older brother threatened me and my younger brother with physical harm if we tried to contact or visit our mother.
Four months before she died, I called stating I’d call the police for a welfare check if they didn’t pick up. My brother was yelling profanity. My mom asked that I not call anymore. I didn’t see my mom for ten months before she died. I spoke to her via telephone four months before she died.
My younger brother was her executor and EMT called him. Otherwise, my older brother wasn’t going to tell us that our mother had died. He forbade us to come from out of the state and that there wouldn’t be a funeral. We had a funeral. My older brother attended and I had a sheriff there with a gun. Her end of life was a tragedy. However, I’m glad she was able to die in her own home vs that terrible nursing home.
Beautifully written and it echoes every single thing I’m currently going through with my mom. I know it was meant for me to read this article! Thank you for sharing
I was doing mostly the same .. but with one different I did not knowing or did not believe that she is dying .. I lost my dad 2 years before and I only was trying to be better because of her . After she is gone I had mixed feelings .. am I happy that she is not in pain any more ? Or I want my mum back in any condition ? Or I am ok when she is ok ?
Thank you for your story . Hope we will be better ..
Beautifully said and it is actually how I felt even though my parents passing was a bit different. My Mom passed on December 30 and my Dad passed July 3rd. They were married for almost 60 yrs. Neither parent were able to speak during their passing but the few months before we talked about things and I remember them all. The feelings your talking about are so right on thinking about your life your passing your children. It surely makes you appreciate life and love more and show you love your family and friends. It is traumatic and beautiful at the same time as your holding their hand telling them you love them and will miss them as your watching them pass. My heart hurts still as this year has been so hard on our family but our parents know we loved them and we know they loved us.
On farther, hold the hand of your dying parent asking you to stop the terrible pain. You as the charge nurse have to honor them, give them the pain medicine you know will stop the pain but also their breathing. Looking in your eyes and smiling says, thank you I love you and then they die.
My Mom has a stroke while living with my husband and I. In her last days I spent as much time as I could with Mom by her bedside. I don’t remember eating or sleeping that last day. She told me early in the day she was dying. I don’t think I said anything back to her. At some point I told her how much I loved her in hope that she could still hear me. It was early morning when this took place and I sat by her bed all day. I doubt I ate but don’t remember even leaving to go to the bathroom or even feeding my dog. I stayed because I wanted her to know I was there all the time. The one thing I regret is I left her room for a few minutes in the early evening. She apparently raised up and that’s when the hospice nurse came and got me. My brother had been by her bedside at that time. I regret I wasn’t there when she raised up out of bed and then She laid back on her bed and passed away just minutes later. So she knew I wasn’t there. I will always regret I didn’t stay with my brother and sit by the bed when she sat up. I was there when her breathing stopped. But I don’t know if she knew I was there. It has been almost 8 years and there are still very hard days and times that I still cry. I doubt that will ever change.
Beautifully said and it is actually how I felt even though my parents passing was a bit different.
A difficult journey but one I wouldn’t trade for anything. My mother was 95 years old and suffered with dementia since the holidays. She had good days and then there were not so good days. My two sisters and I arranged our schedules to care for her around the clock alternating with her granddaughter and great grandson , Adrien who she loved beyond words. She would delight talking with him, playing Old Maid. Some of my most beautiful memories are the three months I spent talking, singing, eating icecream with her in the middle of the night. I loved her so I would do anything to make her last days comfortable and safe. I was with her when she took her last breath while holding her hand. She knew I was there when her soul left her body. We were blessed!
It has just been two years since my mom entered the gates of heaven! My mom taught me everything except for how to live without her. I am in the process of trying to get help