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 mom had a major stroke out of nowhere and had always been fairly heathly. While in the ER the doctor said he thought she was going to be just fine. She still had not come to. He said they were going to do a CT scan just to be sure. That seemed to calm me a little bit. An hour later the doctor comes in and says my mom had a major stroke and its effected 80% of her brain. My world came to a screaming halt. I thought she was going to be ok. My father had passed away 7 years prior to this. My mom was my best friend. She had signed a DNR and she never came to again. I sat with her day and night in her room beside her for almost 10 days before she quietly passed away. But watching your mom die and you can give her food, water, or oxygen just broke my heart in too. I would watch her urine output in her bag get less and less everyday. I keep hearing her voice from a few weeks before she had her stroke. It was our mom and daughter night at her house. Every Thursday I would bring supper and would bake brownies or make something sweet and yummy that I liked. After we ate we would sit at the table and put puzzles together. Then we would watch Wheel of Fortune. I love Thursdays with mom. But this one night she hugged me super tight and said “I don’t want you to ever go”. Broke my heart because I had to work the next day. We buried her on what would have been her 83rd birthday. I gave everyone balloon’s and we sang Happy Birthday to her. This was in March of 2014. Ever since I’ve had nightmares all the time that my mom is dying and I can’t help her. The nightmares are never happy like I wish they would be. Mom or my father is dying or I am at their funeral. I woke up a week ago in a complete panick attack and couldn’t breathe or move. It was really scary. I wouldn’t wish on anyone to watch their parents dying.
I meant to say can’t give her food or water, not can.
Thank you for sharing your personal experience. I cried as I read it because I can relate. My 63 year old Mom was sick for 16 months before she passed. She lived in WI. for half of the year and in FL. for the other half. Us kids (my sister, brother and I, & her beloved Grandson) live in WI. I would fly to FL. to be with my Mom and take care of her. I thank God to this day that she had my Aunts and Uncles in Florida to take care of her as well. I was able to go to almost all of her doctor”s appointments. I remember my Mom telling her doctor that I was “mothering” her. I asked a lot of questions and demanded good care for my Mom. I really was mothering my Mother. She was right. It’s a position I wasn’t prepared for. I cried privately when I saw her have to take a few naps a day because she was tired all the time. And when she was too weak to open her water bottles. My heart was broken for my Mom and would have done anything to make her better. Before my Mom got sick she was very athletic. She would ride her bike over 5 miles a few times a week, take nature walks and did artwork. She always joked that she would probably out-live all of us because she didn’t drink, didn’t smoke and ate super healthy. You can imagine our family’s shock when she was diagnosed with a terminal cancer. We were in disbelief. Not Mom! Even her 8 siblings were shocked. I need to get rid of my guilt that I couldn’t stay in FL. with my Mom longer than two weeks at a time. I wish I would have moved in with her in FL. Also the guilt of being a horrible teenager. The day and a half before my Mom passed us kids were in WI. I got the call that our Mom was in the ICU in Florida. I called my siblings and my son and told them that we need to get on a plane ASAP. We all flew in the next morning. My aunt and uncle picked us up from the airport and brought us to Mom. I will never forget walking into her room and barely recognizing her. This is not the Mom I saw a month ago. I left her room immediately upon entering because I didn’t want her to see me cry and breakdown. I knew that it was the end of her time with us on Earth. God Bless the hospital for letting us stay with our Mom in her room and in the waiting room. We watched her every breath and sadly her final breath. When it was her time, she knew it before we could wrap our minds around it. In the hospital Mom told my son that if she died on my birthday, to not let me make it a sad thing for the rest of my life. My Mom did in fact pass away on my birthday. For obvious reasons I don’t want to celebrate my birthday, but instead celebrate the day my Mom’s spirit went to heaven and got to reunite with her parents, sister and niece. My sister said it best… “The day Mom brought you into this world is the day you watched her leave this world.” So April 4th is a special day I guess. Our Mom took of her children and grandson right until her final breath. She wanted and asked all of us if we would be ok. The last thing she said to us was “I’ll miss you.”
I lost my mom 20 years ago I was with her when she took her last breath and as she did she squeezed her eyes and a tear fell.  My mom had a heart attack and she was in a coma for two days before she passed   I lived out of state I had to fly home  It was her wish not to be kept on life-support however the doctor wouldn’t remove it until I got there it was so hard let her go and it still hard to do this day she was 66 years old the same age that I am now not a day goes by that I don’t think of her    I was also with my husband when he passed away as well from cancer at the age of 57   I was just caregiver for a year   It’s a different experience from losing a parent but still  The pain and the grief follow each one is unexplainable to someone who is not been through it
This has tears rolling down my cheeks. Not because I was there when either parent passed. Because I wasn’t I live in the midwest and they lived on the West Coast. Which leaves one with so much guilt. Knowing..y siblings were there does not help ease the guilt. I am thankful that in 1977 I was with my youngest brother when he passed. But had some issues that it was my fault not being able to do the bone marrow transplant sooner I was pg with my first child when we found out I matched.
Reading your story has helped me to realize that I am not alone in my grief.  My story is slightly different, as my major loss was my grandmother.  She passed of end stage multiple myeloma January 29, 2019.  She was my mother figure, my best friend, and the reason I am me.  I always thought when the time came for God to take her home, I would be ready, I would be strong, but in reality it has been the most heartbreaking thing that has ever happened to me.  I was there to feed her, bath her, hold her hand, and to assure her that she wasn’t alone.  As I watched my best friend begin to leave this world, all I could think was what am I supposed to do without you? There is no guide book that tells you what to do in the time after your loved one passes. It’s been a little over 7 months since she’s gone, and what I try to do now is do at least one thing every day to make her proud.  May God bring peace and healing to all of us.Â
My mother had to be center of attention. If I didn’t talk her at least once a day, she would say things like, you love your father more. She was difficult but I always caved to her demands. She was my mom. She loved me and I hated to disappoint her.
She had cancer but she refused to give into the disease. Hospice dropped her after 12 months for refusing to die. They called it an FTD. Because of her volatile behaviors, especially after dark, we put her in a long term care facility. The guilt of doing that never left me.. After 2 years there, she was put on hospice care again.
Feeling a need to get away after 3 years of being with her several times a week and on the phone struggling to communicate at least once a day, I booked a vacation. Her condition was stable so I felt it okay to leave for a few days. I cancelled the stay at an island resort for fear she would check out and I’d be too far away. So, we traveled to a warm state on the US.
I never called her in 9 days, and she never called me strangely enough. On the day before coming home, I got the call, she was dying. And I wasn’t there. I took the first flight I could get, even though I was led to believe it would be too late. But, as true to her refusal to let go all those months ago, she waited for me. I arrived 16 hours later. To a room filled with family . She had been unresponsive for 17 hours. I had called twice in that duration, had the phone put up to her ear, told her I was coming home. Now remember, she was very deaf, but i believe she heard me. When I came into her room, I kissed her, she opened her eyes and told me she missed me. The unbelief in the room was staggering. We all had a few hours to talk to her before she fell back into her deep sleep.. I stayed with her for 2 more days. Left only to shower and change on the 2nd day. She didnt like that I had left, she was waiting for me to return and send her off to be with the Lord. When I did return, she was holding on with every bit of life she could muster. Temp over 107°, but she could hear me. I gave her the okay to let go. She did, in less than 3 minutes.
I know now, and cant stress enough, keep talking, they hear you because hearing is the last to go.
I can relate on alot of your story, I lost my mother March 21 2019 seems like yesterday. I was so close to my mom she raised my brother and I by herself, always thinking about us instead of herself working to jobs to make sure we had what we needed. As I grew older I let my brother get in my way if my relationship with my mom she helped him up to only hurt him getting him out of trouble all the time paying for his way and never letting him stand on his own two feet. I became angry and Wonder why she couldn’t see and quit he pulled her and everything about her she pushed us other kids aside because we would tell her he was no good! I sat beside my mom in her last days, holding her hand and telling her how much I loved her but still she waited until he arrived to take her last breath. I now have no contact with any of them they all used my mother I tolerate them for her and often wonder why she didn’t love me like she did him she always said he needed her and she knew I didn’t. To this day I cry I miss her more than any words can say if I could go back I would never let any reason or anyone keep me from my mom. Losing my mom I can’t seem to get over I’m 57 and I just guess she would always be here she was 98 when she passed God let my mom stay her long enough for me to be able to lead her to Christ. I’m blessed but I love and miss her so much broken can’t seem to not just cry I just feel so empty and lost I need your prayers. Thank you for sharing your story may God bless you. TK Morris
Watching a parents demise has proven that no matter how big and bad you think you are it will tear your heart to shreds when reality finally hits.  When it does it’s an irreversible sunami of recant memories that flash before your eyes like a movie that runs 24-7. I too took care of my mom. Who was one of the sweetest nectar off the tree of life al sys keeping her head together her loyalty is beyond words that b sent the best daughter I’ve made my share of bad mistakes just like my other four siblings. 5 of us to be complete. The family wall was crumbling down the strongest build block was deteriating and those seditsry bricks that mane he’d have he tine where staring to crumble fast fir mom our strongest foundation was delivering her last sediments  her solid teachings her kind heart her genuine nature where during slowly away into the vast universe.  I also took car of my mom in her great embarrassment telling her mom let me powder your little bum bum as the tears rolled down her face. It came very natural to me to take care of her meds. Eating cleaning and just watching her looking at her so deep starving to see her look st me  in her own way but her glass w. Was dimming and god was merciful Sami sat with her in her last days. I told her how very sorry I was as and how much I love her o played all he favorite music and wouldn’t let go of her hand I couldn’t bare the thought of losing our glue pot who kept all of us together.  As soon tears are running down  my face as I type this in true so real moment of the lifeline severs all the ties  in human form the truth is it is just a vessel the body body so true the spirit lives on to infinity I smell
Her perfume and miss her more every day that I’m alive. She’s always around me.  I’m truly blessed. To still see her face her beautiful caring hands that I can never reach for again.  I  miss you ma. I love you
My mom just passed away. Â I spent about two weeks on and off at night at the hospital. Â I knew the night she was dying. Â I sung to her. Â She wanted me to run her legs and hands. Â I am so glad I was there. Â Thank you for your story.Â
August 6, 2019 my Momma had a massive stroke. 10 days later she passed at Hospice. I rarely left her side during those days. About 2:15 on Friday August 16, my Momma was surrounded by her family as she took her last breathe. That was one of the most difficult , yet most beautiful moments God allowed me to experience. After seeing her in the state she was in, it was a relief to see her relaxed and at peace. I have never known such heart break, nor did I know it could exist.Â
Thank you for sharing your story.Â
My best advise is share your emotions, either with your spouse, your person, or a counselor. This isn’t a time for pride. Let down your walls and let others help you. There definitely is no loss like losing your Momma