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 feel like I could have wrote this myself. I lost my mother last November when she had just turned 59 from Lung Cancer just 5 months after she had a freak fall and it was found during a routine xray. The cancer spread like a wild fire. She was on Hospice Care her last 10 days of life and I spent every day and every night but two with her. I crawled into bed with her laid my chest on her head and told her everything was going to be ok and that she put up the best fight and soon she would be whole and healed and with us forever. Within minutes she passed, we had said all week she was waiting for something and I had joked with her many times to move over I was crawling in bed and taking a nap with her but never did until the moment she died because she was so fragile and I never wanted to hurt her. She had been waiting for me to crawl into bed with her and as much as it broke my heart to hear her heart stop beating it also brought me peace to be with her in her final moments like that. What a difficult road this is to travel. Thank you for writing this I related to everything.
Oh my! Reading this is like someone was recording mother’s last weeks. She was hard on herself always, and on me occasionally. She wanted to go home, her home. That is how I failed her. My counselor did not agree.
This is the second round of holidays and the grief is overwhelming. Time may help, though I am not convinced.
Thank you for sharing your loss. Prayers for healing.
Reading your story brings back memories of my own parents death processes. Both so very different, yet the end was so surreal. It took a couple of strokes and a year of suffering for mom and her fast decline.its been over 8yrs since mom passed away. Dad suffered various falls and broken bones that took him 2 1/2 weeks to decline and only just 8 months ago now since dad passed away. This holiday really sux for me as now both parents are gone. Thank you for sharing as the memories will never fade. It’s never ending for grieving despite the differences in how we were all raised, our parents did the best they could for us.
I have had to sit by my Husband’s bed, holding his hand as he struggled for his last breaths and succumbed to Cancer. Two years later I had to sit by my Mother’s bed, holding her hand as they turned off the machines they had breathing for her after a massive stroke. It took 30 minutes for her heart to stop beating and the machine to flatline. I hoped I would never have to go through that again. Almost 18 years later I once again had to sit by the side of my dying Father as he struggled to draw breath from the Pneumonia he was suffering. The machines he was attached to were fluctuating madly and rising higher, then lower. I sat beside him and sang all his favourite songs to him (he was a great singer). The machines settled down, then his breaths became shorter and shorter and further apart until there was just a small sigh, then silence. I can only hope that my songs helped him to let go peacefully. I’m glad I was there for each of them at the end, even though it was so hard for me. I can only hope at least one of my children will be there for me when it is my time.
I lost my dad 20 years ago…i was just like yesterday. He was at home on hospice at 13 days of diagnose of Cancer. We knew the days were short. There was no chance. That night we knew it wouldnt be long. We awoke to his labored breathing called the hospice people in which were no where to be found. My father was my rock. We did everything that hospice was supposed to do. Thankfully we had a nurse neighbor. My father did pass….it took the coroner alittle to get there and eventually our hospice Ann showed up. A picture i will never get out of my head is my father being placed into a body bag….
It’s been 11 years since my dad passed away. I can still hear him say my name. I hear his voice cheerily sing happy birthday in my mind. Every time I see a strawberry milkshake on a menu I hear him ask “do you want it?” I see his curls flop in the wind has he laughed.
I miss him.
When my father passed away . I felt like half me went. Even know it has been over three years I still mourn . But because of his advice and strong words. I always have him in my heart and mind.
Thank you for sharing. My father just passed away in July of this year. I flew up to visit him for a vacation and ended up staying with him an extra couple weeks as he was dying. My father was a strong red neck type. We sat for hours in silence or only saying the simple things, thirsty, bathroom, etc. I knew he loved me but he didn’t tell his thoughts, his regrets, his blessings. But I believe I’ll get a chance to hear all of that in heaven. I’m just so very thankful I was there.
And yes, I remember the day both his hands turned white and his fingernail blue. I hadn’t read the book on dying from hospice yet so didn’t know. I justified went and wet a washcloth with very warm water and set about warming his hands back up. They did warm back up until he passed two days later.
I have been put in touch with someone he did talk about his life regrets and happy times with. I’m excited to hear what was on his heart. I do have a voicemail from him that I keep so I can hear his voice.
My Brother was with our Aunt Bernice when she passed.
When our Father’s heart was in the process of giving out, I was usually the first to my Brother’s house and the last to leave. This went on for several days. I would feed him and listen to him and some of his Visitors talk of the old days. Daddy and I had some Amazing (last) conversations. Then I asked my Brother about switching to being there in the evenings and nights. He said that was okay with him. Things were good for a couple of days. Then my Brother developed a case of pneumonia. He went to try to get some rest/sleep in the recliner in the living room. Daddy passed, Peacefully, in the wee hours of the morning.
Yes, it was not even close to the easiest thing I’ve ever done. But, if I had to do it again, I still would. I had and have an Undying Love for Daddy.
I was with my Mother her final days. The change in her physical being was was shocking as I had just saw her 2 weeks prior. All my siblings were there. All 8 of us. My Dad say by her bed holding her hand. That sight was heartbreaking as they were married 72 years. My Mom wasn’t awake but fed eyes were always opened a little but. They no longer looked blue they were more gray. We would tell her it was okay to leave. We assured her Dad would be fine and John (my brother who passed a few years ago)will be so happy to see her and show here all around heaven. Wherever we mentioned seeing Jesus my mom would thrash around in the bed. It was as if she was fighting with Christ, telling Him she didn’t want to go. Each of my siblings had time alone with her. I read The poem, “A Mother’s Crown”. I cried through the whole poem. At the end of my reading my Mom squeezed my hand. As she squeezed, he eyes opened and she was looking at me. Her eyes were so blue, as they always were. The gray eyes were gone. She said, “I love you, Susie”. Soon her eyes were back to half opened gray colored slits. Her “active dying phase” was going into the third day. I lived 2 hours away and decided to go home to get more clothes and get my children ready for the funeral. I returned home on a Monday night, my mom passed Tuesday night. I’m glad I was by my mom for the last few days. She had a very progressive form of dementia that was just heart wrenching. It was so sad watching my Dad sit by her bed from morning to night. When she passed my sisters didn’t wake him up since he was so totally exhausted. I don’t know if the assisted living staff rolled her bed out while my dad was sleeping. I never asked and don’t want to know. A week after my moms death, my dad became sick and had a 2 week stay in hospital and a 3 week stay in a rehabilitation facility. During that 5 weeks away he lost ALL memory of my mom. He looked so sad. He would refer to her as “my wife” or “Janet” which he ALWAYS called her “Mom”. He was released from rehab on a wed. I returned home since my sister was there. On Friday evening my Dad told my sister, “I think I’ll go see Mom”. He passed early Saturday morning. I’m so glad they’re together again! That thought is what gets me past the bad days. I have so much regret. I didn’t visit them nearly enough. I had excuses; Molly (my youngest) can’t miss school and I have to be there or she won’t get up in the morning. Or I was working.
There was so much to apologize to them for. There was so many more “thank you’s” and “I love you’s” to be said. Regret is so debilitating. I would not wish
“Regret” on anyone. I haven’t been able to go to the assisted living facility where my parents lived since their passing. I haven’t gone to see the memorial garden where their ashes are kept. I doubt I’ll ever go to either place. I got their living room furniture when we divided up their things. Once in awhile i feel them here with me. At times I’ll smell them in the family room. It’s a very comforting smell. Sometimes I’ll bury my nose in the couch cushion to try to retrieve that “smell”, especially when I’m feeling down. The smell is not there in the cushions or the chair cushions. It’s only present when they’re here with me at times for just a second but it’s always the best second of the day.
Watching my dad take is last breath just about haunts me! I miss him and wish he was still here and in the next moment I know he is in a great lace and went on his terms but sometimes I wish I was not there for the stay at hospice! It was too hard to watch!!
I have lived through the death of My Bestie, My Grandfather, My Pop Pop (Who I looked after, in His last years.. He had gotten Colon Cancer, ended up with a Colostomy Bag, and as an Old Time Italian, it took Him awhile to let me help Him with that!) My Grams had passed almost 20 years prior, and it seemed as though he was on AutoPilot. I had to leave him to get knee surgery, and before I left, I told Him something.. I said, “Pop, you wake up every day, and work just to make another day.. At 80 plus years, you can rest. You have taken good care of us… You can rest, it’s ok…” When I left for the hospital, he began to rest.. His breathing, and his heart rate began to slow.. My sibs were telling me “You Gotta Get Home, He’s Dying!” Three days later, I came home from the hospital, hobbled up the stairs to His room, and as I looked into His eyes, to let Him know that I was back, He looked at me, and passed away. He waited for me to get back.. I cannot WAIT for the day that I get to thank Him for that! My Mother, who ended up with Brain cancer, died just 8 months after her diagnosis. She peacefully faded away, without a hint of discomfort( at least she showed us none!) surrounded by her 5 children and her Second Husband (Who she spent the Second Act of her life with, a true Blessing!) My Father’s passing was a bit more traumatic, a story for another time.. My addition to your story, Jill, is to emphasize one thing.. If you have the blessing of time, leave NO QUESTION UNANSWERED. ASK, ASK, ASK the questions that you have. Because once our Loved Ones pass away, we can no longer hear THEIR Answers! 🙁
My mother passed a bit over 5 years ago. The last words she said to me, as I sat by her bedside watching her, was “Oh, I didn’t know I was being watched”. Kind of hurt my feelings at the time. I wasn’t watching, rather adoring, but that’s ok. It was her time, not mine. My feelings didn’t matter. I, as so many others miss her terribly to this day, and suspect I always will. Thanks for your story, it touched me.
I’m so overwhelmed by your writing that I can’t tell you my story yet but I will be back. Thank you.
It’s incredible just how similar my experience losing my father was like you’re losing your mother.
So many similarities of coarse differences but the gut wrenching pain… and no you never get over it you just learn to live with it. I guess
With peace love and light hope and strength
Jeannine
My mom passed June 20th 2019 3:20 am at a very active 80. Pancreatic cancer was her first ever sickness, first diagnosis said 1 year, after the biopsy came back 2 weeks later she had 3 weeks or less to live, she lasted 6 weeks and 2 days. Everything you experienced I did also, a week with no sleep, sister gave me 2 nights off and she passed my first night back she died. The sitting in silence, watching her chest rise and fall as the dim beam from a distant street light illuminated her silohette. Wiuet and to sleep is all she wanted, that’s exactly what she got, she knew someone was there and it gave her peace. No words would’ve helped and none were needed, none were spoken. All I wanted was her to pass peacefully and I didn’t want her to be alone. I was there, it was peaceful and as sad as it was it was perfect. Your words are my story.
As a hospice nurse I see this daily. I’m not complaining at all in fact the opposite. I feel honored to be allowed into a families lives during this heart wrenching rewarding special time. So much of what you have written reinforces this. I too took care of my mother during her final time and I too failed at some things but I excelled at others. Aside from outright abuse it is difficult to do something very wrong. I dont regret the honor I had of taking care of her I would do it a thousand times over if needed. It has been nearly a yr (18 days shy as a matter of fact) and I miss her daily but take comfort in being her comforter in the end. Love your loved ones while you have them!
My beloved mother left this Earth 10 years ago, still feels like yesterday. She had stage 4 metastatic breast cancer and I watched her wither away. Worst and best thing to happen to me in my life. Her death was an awakening for me. I will always cherish my time with my her…she was my best friend.
My Mom passed in April of this year and my Dad passed in May of this year. I have a hard time accepting that they have passed. I had seen my Mom the day before she was sleeping I woke her and she had opened her eye and then went back to sleep and passed the next morning. It was unexpected. As for Dad he had bladder cancer surgery in January of this year. He developed infections and would not eat or drink I new the surgery made him very sick but I thought he would recover. I saw him slipping away very quickly as my Mom and Dad were very close. It has been very difficult to deal with. I am still in mourning and disbelief.
All true but in my moms case, being ill most her life , she talked of death often. When she died, I didn’t cry. I was relieved for her and myself. She lived with us at the end for a year and a half. Yes, she did become my child. That was the most heartbreaking thing of all. I’m sorry I lost my patience at times but I’m also happy I took her into my home. She wished we were at hers but it wasn’t possible. She was safe, and I went to bed feeling happy she was with me under my roof. Safe. I went to a caregiver support group which helped.
No matter how overwhelming it felt, I would do it again in a heartbeat! I can’t say she would want to do it again though!
When she was aware of me taking care of her and helping her she would call me the pet names she use to call me when I was a kid. I miss her terribly…the mom she use to be before dementia robbed her of her senses. I love you and miss you mommy, so much!
My dad died before my mom so she was his caregiver. I went to the house as much as I could but my mom had a good handle on it. I slept over the night he died and was there for my mom! Much easier. I miss you too daddy. Love you both so much. You were the best parents ever coming to this strange country as immigrants hoping to give you and your future children a better life. You did and I’m so proud of you both and what you accomplished in this country!
Rest In Peace my mommy and daddy.♥️♥️
Thank you for sharing…in a couple of days my mom’s first anniversary in heaven will be here. My sister and I cared for our mom a year before she passed. We spent nights in hospitals, rehabs, hospice, and her home. I would not change a single thing, we held her hands and sang her to sleep….we watched and cried as she took her last breath. I think of her daily, and dream of her more than I ever did my whole life. It’s safe to say I am clinically depressed and should consider seeing a counselor. I never knew it would be this hard. There is no one like your mom, and I’m certain no one will ever love me as much as she loved me. I miss her voice and her laugh so much. Hugs to all the orphaned adult children out there…you are not alone, even if you feel you are.