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”
Thank you so much for sharing this with me and others.i lost my mom ,3 years ago on July 27 she just turned 7o on July 11.i lived with her and took care of her for 3 years she battled 4 cancers during that time and beat them .I was close to my mom she was there for me all my life.but on that day she passed.last words we spoke mom I’ll be back soon to make you gouloush and bathe you going to library I love you kissed her and told her to rest she said I’m so sorry.she said I’m so tired I love you to.a hour later our house blew up and lost everything.oh that day was a nitemareu miss her
YES, going through this right now with my dad and went through it in APril with my mom. My son and I have taken care of them for the past five years and now we are going through their deaths this year. So thankful for my son who has been through this journey with me and the two of us are taking this last journey together as well. Very hard but such a blessing as well.
Thank you for sharing this. I lost my dad 7 years ago, he died suddenly, did not have any good by or closure, it was a horrible struggle, filled with doubt and blame and maybe if…. My mother just passed a month ago and I was by her side over a week, I watched her slip away a little at a time. While I had the time to say good by to my mom it was so very hard watching her go. Every thing you wrote about here is exactly what I experienced. Bottom line is that no matter how it happens, when you lose your parents a part of you will never be the same.
Thank you so much for sharing your story. I lost my Daddy last year. My Daddy had been sick but he didn’t tell anyone. He was always a strong healthy man and within one week he was gone. We took him to the hospital because he was having trouble breathing and within 24 hours he was gone. We had to place him on a ventilator to assist him with breathing, everything went well and they were coming to get us and he suffered a heart attack. As promised we did not place him on life support. My mother sat on one side of the bed and climbed in bed beside him wrapped his arm around me and lay with my head on his chest until he took his last breath. The hardest thing I have ever been through in my life.
Think the worst part is not being with your mother on her last day especially when your told she will still be okay for a couple days and my brother talked me out of going to be with her when she came out of ICU because I worked third shift and should sleep then come to hospital. So I did but within a few hours after being taken out of ICU to regular room she passed and I didn’t get the last moment with her. She and I were so close and always taking care of her needs. Still this day it haunt me I wasn’t with her for her last breathe. Love You Mom!!
I did everything the same as you as you did and I was 19 when she passed and 43 years later , I did the same for her sister who actually was my mother for longer than my own mother.. they both passed from breast cancer. My mother lasted Five years with constant pain and surgeries.. it took its toll on a teenage kid .. but like you I wouldn’t have it any other way . When her sister got breast cancer it was heart wrenching for me but she lasted twenty years and lived a wonderful twenty years and never left my brother and I. She stepped into my mother’s shoes like we were her own children . Our children considered her their grandmother . We were very lucky to have her. So when she got sick the second time at 76, it didn’t hit me right away that this was going to be my second time around. She no where near suffered as much as my mother because technology had gotten better. When taking care of my mother there was no hospice so it was me giving the morphine shots to her for pain . Yet that was really the only thing that was different. I
Had to do it all over again. I was more prepared as an adult to do the care taking both emotionally and I guess physically but the feelings at me end were the same another part of my heart was taken . My fathers death was sudden so there was no care taking and no time to prepare emotionally. Somehow that was harder. I think being a care taker to
A a loved one gives a better sense of closure knowing you had done all you could do .. I’m still in morning from the loss of my second Mommy but I still mourn all three of them . With my Dad I never got the chance to say how much I loved and appreciated him one last time . Thank you for this article because it makes us feel that we are not alone and only another care taker knows what it takes to be one . I was exhausted emotionally and physically after my aunt because I was older . With my mom it took me a long time to get out of the denial that she just was never coming back. My mother’s last words were so different than my aunts my mother told me she wished she could take me with her but she knew that wouldn’t be fair .. and that I should live my life to the fullest . My aunts last words to me were Kathie it’s time and I’m scared my sister left me alone and way too soon but I thank God she left me with her beautiful daughter to take care of me .. and then she just started calling to Jesus .. and I closed her eyes as she took her last breath because she passed with her eyes wide open in fear .. in my arms . But as I said it gave me closure ❤️
I cared for my Loving Mom for 13 months before her passing 2 months ago. It has left an empty space in my heart. My Mom lived alone since my father’s passing in 2007 she was an out going and independent person until she was diagnosed with a blood disorder. Mom still has so much life in her she still wanted to take care of her plant and do her crafts until her blood started clotting. Watching her die a little each day was extremely painful for me. When she took her last breath I felt like I took that last breath with her. I am not the same person that I was before she passed. I hurt today just as much as I did the day I lost her.
My folks moved across the country to be near my growing family in the 90’s. My dad passed suddenly of a heart attack in 2004 – we said that’s just the way he would have wanted it, short and sweet. We had dinner with him earlier that day, and we believe he lived his life with no regrets.
My mom passed of lung cancer in 2010 – she never smoked. She had several months to deal with it, but always hoping that she would be healed. We were all in denial — almost until the last week, when they told us to take her home for hospice care.
She told us she wanted to see her grandchildren and Christmas. This was the last week of November. I flew my daughter home from school for thanksgiving week, and my brother flew down from Washington… and we all encamped around her hospital bed in the tiny living room. We put up a Christmas tree. We had thanksgiving dinner sitting around her, and she even had pumpkin pie.
She was hooked up to oxygen tanks, and we kept blowing a fuse in the house because of the extra pull on electricity. She didn’t want to take the morphine, because she thought she might get “addicted”… even though the nurses explained it would also open up her passageways.
On Sunday, she was aware of all of us and rooted for the Chargers on TV. We watched a movie. The hospice folks had left, and a doctor was scheduled to stop by on Monday.
Sunday night we took my daughter to the airport and I went upstairs to get some rest. My husband came upstairs after midnight and said Mom was breathing loudly. The death rattle… I woke up my other daughter, and my husband and brother and I sat beside her. We prayed and held her hands, and told her it was ok – that she would soon see my Dad.. and Jesus. It would be beautiful.
I remember her saying “I don’t feel any pain … no pain” – I think up until that moment, we thought she was going to have a miracle, and suddenly get better. But this was getting real. Within a few minutes, she took one last labored breath. And we all sat in astonishment as she crossed over.
My mom and I were very close. She was such a blessing, and i miss both her and my dad every day. I only hope that I can carry on whatever goodness they imparted in me through my own kids. Thanks for allowing me to share my story.
Very moving & honest account of your Mum’s passing..
I was with my Mum during her final journey & as hard & emotional as that final 10 day’s were.
I wouldn’t have wanted to be anywhere else, but at her side.
Holding her hand, talking to her of times past, of times ahead. Promises made, to care for my Dad, keep an eye on him & make sure he ate properly..all the thing’s she was worried about & I could do my bit to dispel..
Bizarrely, due to tge cruelty of Dementia, my Mum hadn’t known who I was for three year’s. I hadn’t been able to call her “Mum”, as she would become confused, saying am I your Mum..
Or I haven’t got a Daughter..& start crying..
Or asking for her own Mum..
So to ease her mind, she had been Jo..
But during her last 10 day’s in hospital.
Bought about due to neglect in her Dementia Specialist Nursing Home..
Which we had only discovered, due to bringing her back to her marital home, to celebrate her 61st Wedding Anniversary with my Dad.. w hadn’t been able to rouse her, so had telephoned for an ambulance.
Her emergency admission to hospital broke all of our hearts. To hear this wonderful & defenceless lady was suffering from septicaemia, was in renal failure & basically drying.. had gone a minimum of 48-72 hours..without food or fluids.
Just broke us..
She had received my Father’s devoted care for 14 year8of this awful disease & it was only due to my own hospitalization & then a a deterioration in my Dad’s health. That Social Services decided my Mum’s nursing needs, would be best met in a 24/7 home.
It broke my Dad to agree to that, even more so.
When just 5 months later, we realised the extent of the neglect she had been exposed to.
We were visiting daily, but her sudden sleepiness & lack of response was explained away, as tiredness due to tge weather & poor sleep the night before..
She had always..just had a cup of tea..or sandwich..so we had foolishly believed their lies & things deteriorated further, until the sad day or that home visit.
Part of me is still thankful, we bought her out of the home that day.
So we at least had chance to say goodbye to her.
Her nursing needs were met.
She was pain free, kept clean & had her dignity restored.
I still wonder about the way she suddenly rallied, became alert & really got that spark back in her eyes..
That although she wasn’t able to speak.. her eyes expressed so much.. she knew each & everyone of us. Clutching our hands hard, squeezing in comfort in return & silently sheading a tear or two, as I reminisced with her. Tge day my eldest Daughter, asked permission to bring her two little one’s onto the ward, stays with us, to this day. She had both babies..18 month’s old & 5 month’s old..
Nestled into the crook of both arms..
Her hands alternating between stroking their chubby arms & legs.. or holding their hands or lil feet. She had looked at me, back to them, snuggled either side of her.. so confused..?..
It wasn’t until I said, ..
Mum..they’re not my babies.. they’re Aimée’s..
That the biggest beaming smile crossed her face.. lighting up her eyes with wonder & she filled up with emotion..
Clearly realising, she was holding her great Grandchildren, in her arms..
Not for the 1st time..
But for the 1st time with her full faculties & full knowledge, of who was who..
Within day’s, that special time was gone. Drs had admitted their Hope’s for turning things around, kick starting her kidneys was gone.
Mum’s organs were shutting down, she was leaving us, so care moved to more palliative care.
Keeping her comfortable, pain free & sadly that also meant she slept more.
We still took turns, sat by her bedside. Holding her hand, listening her lips & telling her often how loved she was.
I had been weeks away from getting married..
My fiancee had sat with me one day..
Suddenly deciding to tell my Mum our plans..she had given both our hands a squeeze & he had used the words my Mum had so often said..after my divorce so many year’s before..
I hope I see you settled & sorted before I go..
I used to tease her & say..
Why, where you going?..
Never thinking, there would be a time, .y wonderful Mum, wouldn’t be there at my side. To put the world to rights over a pot of tea & a cream cake..
The morning she passed, my Dad & I were holding her hands & she was fighting so hard to stay with us…
We in the end, just pleading with her to rest, go to sleep & let go..
That we would see her again one day..
That we would all be together again.
When she finally passed, it was with a quiet sigh..
Her face relaxing & the year’s of pain through her Osteoporosis.
The confusion of Dementia..
Just faded away & the Mum I knew was there ,at that moment..
That day, will forever stay with me.
The wonderful woman, who was my rock.
Who always had time to chat, a kind word. Reassuring & strong..
So losing her, two month’s before my wedding.
At such a special time in our lives was hard. But my Dad was adhement, nothing should be postponed.
My hubby to be & I should go ahead with our special day, that Mum would be with us in spirit.
Which I truly believe she was..xXx
Your story really reminds me of mymothers and mine I went threw the same story and the hardest part was that Iam pregnant and seeing my mother pass has been very hard for me I just pray that when my baby is born I have a little bit of her in my child and thank u for seeing ur story feeling a little bit not so alone thank you