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”
My dad passed away 6 weeks ago after we had discovered he had pancreatic cancer just a month prior to his death.Â
It haunts me because I knew he was losing weight. He kept asking why his legs were so weak. I didn’t know anything about the pain in his stomach/abdomen until the March of this year. We first noticed him getting confused and weak so my sister took him in to Urgent Care where everything cardiac checked out just fine. (This is always how we assumed we’d lose him). We had follow up appointments the week after to find out more. Nothing – just blood sugars out of control. Me, my sister and my dad worked hard at improving them.Â
Then March 17th we took both of our parents to the ER. Mom had post surgical complications and Dad was weak and confused. Mom was admitted and the ER doc told us Dad’s presented like pancreatic cancer. We went home. We didn’t get a follow up CT until March 24th ….. where it was confirmed; pancreatic- stage 4.  Maybe we could talk to a surgeon? Oncologist? We waited. March 26th Dad was vomiting and weak so we took him back. They kept him for IV fluids and pain control. We went home March 29th with Hospice. My sister and I took care of him (and mom) at home with the help of hospice. We took him to hospice house April 15th because my mom didn’t want him to die at home. We were with him when he passed on April 20th. I held his hand, scratched his back, dressed him, bathed him, took him to the garage so he could smoke… I told him how much I love him and how thankful I am for this wonderful life he’s provided to us. He cried. I cried. I wish I could tell him more. I just wish he didn’t have to go.
Mom passed Jan. 16th 2022. she was tested for covid on Dec. 27th…was positive and everyone else in the house was also. My 2 daughters, gson and his girl. Daughter 1 lives here an seeing how worn i was, would take over so i could rest. Mom was always moaning, crying an calling out for her Mother. Jan. 2nd we had to get her to the hospital… she was dehydrated an lethargic. It was difficult to get her to eat or drink. the next 3 days i wanst allowed to visit her, so i slept. when they finely let me see her, it was aweful! and what i seen, was the same thing i seen at every visit after that until Jan. 13th. She withered in bed..cried out for her mom, pulled out her decathater, an tried to do the same with her IV. It was all nonstop… never a moment in any of the visits did this withering slow down or stop. I would go home crying.. there was nothing i could do. the nite of Jan. 13th she was transported to Hospice and when i finally got to see her, my youngest brother was with me. i felt a huge wave of relief!! huge!! she was calm, cleaned up, redressed, with a light weight jean quilt over her. Mom loved making jean quilts most of her life.. for kids, gkids, friends..and to sell. the next day, and the next.the same… and her long silver hair was washed & braided. when she passed, my brother & i were just finishing breakfast at a nearby restaurant when we got the call that she passed. I was so drained… finally relized i had lost 30 lbs an looked like a skeleton. i went into the room, held her hand, cried, and wispered to her …its over now, you are home with your parents, your safe. I kissed her cheek, told her i loved her and would miss her very much, after awhile, we left. I still hear her callen me, either by name, or Mom..as she often thought of me in her mind – she had dementia, an covid-pnemonia.
This article hit me hard.everything you wrote i felt or feel.my mom was also in hospice and she lived with me.she passed away on 12/23/21.at my home .I will never forget that day.and I have many regrets. I miss her so much some days I cannot breathe. And when it hits me the pain is so raw.i think losing a parent or a child is the worst thing we can ever go through in life.
My parents are both gone; dad in 2010 on New Years Day, mom on Mother’s Day in 2013. Not sure what was up with the holidays! Your words are so true and people should heed your advice. I could go on about my experiences but I’m not up for it. It does however get better. I still miss my parents every day but sometimes now I can remember them with a smile instead of a tear.
I took care of both my parents. I talked in depth with my mom about her death. I was more prepared for her death than my dad. I was the sole caretaker for both. Watching my dad become a shell of his former self, has been the hardest thing to get over. I did everything for both of them. Showers, changing soiled underwear, cooking etc all while working full time and taking care of my own family. Then I’m May of 2020, I was now taking care of my dying father and my dying daughter. I’m still not over the whole thing. My mom died in 2015. And my dad passed in 2020. My daughter survived but not without issues. Everyone says I’m strong, I’m tired… oh so tired. I just don’t know if I can keep it up. Grief never leaves… it just gets easier. Blessing to everyone who has gone through this.
Its funny this showed up.. my mom passed away almost 2 months agos. She beat lung cancer and 2 years later finds out she has chf. She went in because she wasnt feeling well and never came home. I can picture and hear her up to when she took her last breathe. I find myself feeling like im stuck and cant get past it. Questioning if i made the right choices and take her off the machines. Im just not sure how to get past this point
Thank you for saying the words I could not. My sisters and I went through this last year. My Father had a stroke on Christmas Day 2020, covid prevented us from being with him at the hospital, we didn’t know what was going on – we brought him home to Hospice at home and he went home to be with his Lord Jan 3,2021. My 60-yr old brother passed away, we think of a heart attack, July 22, 2021. It was a total shock for his wife and family. We and our Mother were heartbroken. Our Mother was in and out of UTI’s and the suspected diagnosis of bladder cancer with scheduled surgeries, only to be cancelled and rescheduled over and over again – to this day we do not know for sure. We couldn’t keep her out of the hospital long enough to get the procedure done. She was in a lot of pain in the end – hospice was a godsend and she passed peacefully on Sep 11, 2021. My hardest memory was when she was staying at my husband and I’s house to give my other sisters a well deserved break. She wouldn’t stay in bed and called me in every hour to take her to the bathroom. She was so weak I had to wrap her arms around my neck and drag her across the hall to the bathroom. My husband still gets teary eyed thinking about watching me do this. Yes – we become our parents keepers at the end of life – just like they were ours at the beginning of ours. That is what we do, I know of no other way in my life. Treasure Life – Love Life and act on your Dreams, if you can, if not, write down your dreams so you and everyone knows what they were. Be good and kind to each other. I was taught early and one of my teachers in 6th grade had a statement above her desk ” Do unto others as you would have others do unto you”. I have lived my life around this statement to this day. God Bless all that have gone, are going and will be going through this experience. You are not alone.
my mom passed 3 years ago march 27th.I travelled around for years but decided to move back to my home province since my mom was getting older.I tried to get her to move in with me for a few years but she was very independent even thought she was crippled .She had polio as a young girl only 13 months old then my parents were in a horrible accident in the U.S.in 1950 and her good leg got so badly smashed they had to remove her whole knee,I am the youngest of 8 so i only ever knew her with both crippled legs.I can tell you I have never met as strong a women as her ,I never heard her once say she was tired raising 8 kids and being crippled so I decided it was my turn to take care of her no matter what.Well she finally decided to move in with me I had to do it all not one sibling offered to help either physically or financially.Nobody even went out of their way to come visit none of her kids not even her brothers and sister she was the oldest of 12 kids,some of them even said if she starts to be a handfull just place her in a home .NOT GOING to happen as long as I was around but she did say if she got to the point where she didnt know who she was or I was then she wanted to moved to a home.Well I had her here at home by myself for 7 years even her doctor told me I needed to take a break but there was nobody to depend on,so I stay home for 7 years until she fell one day,she fell a couple of times but this time she decided she didnt want to try to walk anymore and that it was time to move her to a home .That took a year on a waiting list.I could see changes in her with ups and down she even made me cry a grown man but she sorta made me feel like I had done nothing for her but I knew where that was coming from.She would sometimes think I was my dad who she divorced after 32 years of marriage. and other time call me by her brothers name.She did have bad head trauma from the accident in 1950 and I am sure some of that was affecting her mind.Anyway she finally got into a home and I was there 3 times a day when she woke up at lunch and again when she was going to bed for the fact that I wanted to tell her as many times as I could that I loved her.It broke my heart everytime I left the home because she had bad health the last couple of years and I was always scared that my biggest fear in life that I would not be there when her time came,I did what I could to spoil her rotten lol I decorated her room at every holiday to the point everybody used to come by her room all the time to see the flowers and teddy bears and decorations,well after 2 years of her being in the home she got pneumonia the home was attached to the hospital so I ook her there and they kept her some time in fact I made sure nobody even told her when I was in the hospital after having a heart attack but as usual I think she figured something was up but never confronted me about it,when she took a turn for the worst they tried many different antibiotics but nothing worked and her heart was starting to fail I didnt mention she has heart surgery to have a valve in her heart replaced well those are only suppose to last about 10 to 15 years well here she was 30 years after.we finally told the doctors we wanted the truth was she dying and they said yes.So I asked her if she wanted to dye there or back in her room with all her stuff,but we knew both her and I what that meant .They moved her back to her room and had her on breathing machines but i knew thats not what she wanted so I told her it was up to her if she was ready to go.so we stopped all her meds since she wasnt eating or even drinking anymore.They put her on pain management to make her comfortable but that meant she would be out and I would never be able to talk with her.she survived for 3 days but she did open her eyes and look at me and say why is everything white I told her she knew that was god opening the doors for her,I just sat with her and she said in the smallest little voice it sound like she was a little girl and said Im tired now and I think I need to go to sleep.That was the last she lasted another night.I never left her side from the time she got sick till she passed for 7 days and to top it all off she was 7 days from her birthday so 7 years with me ,7 days before her birthday and 7 days since she fell sick life really is very strange well the nurses finally convinced me to go home to check on my pets I was so worried I wanted to be with her when she takes her last breath well I got home and the phone wrung I live in a small town and it was the hospital saying i need to come quick but she passed about 3 minutes before I got back .Y worst fear had come true but the staff sat with me and I think maybe they were right that she waited till I was out of the room when she took her last breath and knowing how she was I was still her baby no matter how old I got.She didnt want me to see it.all in all I would never had changed those 7 years for anything .I think sitting there with her watching her sleep and watching her chest go up and down helped me more than I could have ever thought you see I never thought I would be able to survive if I lost her yes I did cry like a baby and hold her for hrs.I had comfort having the last 7 years with her to spoil her and do everything for her as she did for us and never complain. and she wasnt alone because of of her favourite male nurses had come in to say his good byes to her and sit with her while I was not there.So yes watching your parent dye for me was a comfort that I never thought I could feel.
I have lost both of my parents. My dad had a 10 year battle with a type of mouth cancer. I watched it ravage his body month after month and year after year. Until finally in October 2003 he took his last breath while I was holding his hand. We had made peace during his illness fairly early in his illness so i visited often and took care of him as much as I could.
Unfortunately, my mothers death is still fresh and raw in my mind. 3 weeks ago she took a nasty fall in her kitchen. This day also happened to be the day my brothers daughter gave birth to his first grandchild, my moms 2nd great grandchild.
The fall caused severe trauma, a fracture to her neck and severe facial fractures. As a result she was paralyzed and not able to breathe in her own. My brother had to follow her wishes and let her go. Before her fall she was a vibrant very active 76 year old woman she loved to travel and loved to eat good food, write about food, and all of her travels.
I am thankful that the doctors and the nurses made sure my mother was in no pain, and i am thankful i got to tell her to rest easy and that i loved her. But nothing prepared me for that moment when she took her last breath.
I have walked around for the past two and a half weeks in a fog. My fiance is flying back to my hometown this week and is taking me home for the first time since all this began. And my brother and i will continue to plan and prepare for her memorial service in July. And that is when we will officially turn the house back over to the estate and wait for it to be sold.
Thanks for listening to my ramblings.
Yes it’s a pain that I’ll never get over but My dad died at home with everyone who loved him dearly. I held his hand until his last breath and heart beat . Very precious emotional heartbreaking moment