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”
My mom passed away 7 mo the ago and to this day it still doesn’t feel real . My mom had dementia even though she forgot who I was I could feel her love for me .i was with her when she went to be with the creator and just before she left I told my daughter grams leaving now you need to tell her that it’s okay …as my daughter told her gramma good bye and the love she’s had for her a single tear rolled down my moms cheek and a moment later she was gone …
It. Is the same watching your wife pass.
Thank you so much for sharing your story. My mother’s life was taken by breast cancer in 2007. I dealt with alot of the same things you did with your mother. I relive her death and the days leading up to it every day. I pray for you and hope you find peace.
This was a beautiful and poignant essay!
My experience was different. My dad passed away while we were on vacation. He had been taking TIAs and back in 1975 the doctor didn’t do anything to help him and dad refused to let me take him to another doctor. I think he was ready to go. He was 80.
My mom struggled on till she was 86. She lived in a nursing home for the final 8 years of her life. She had emphysema and osteoporosis which caused her back to break at least 3 times. She needed skilled nursing care. Sadly had she come to live with us, my marriage would not have survived and maybe I would not have either. She was very stressful to be around. I loved her dearly, and she loved me but until a few weeks before she died, I never felt like I came up to her standards. Thankfully we got that talked out. So I would encourage you to be gently honest with your dying parent. Let them know that you love them and you forgive them for anything they did to hurt you and you need to forgive yourself as well for anything you did that wounded them.
I watched my mother-in-law die in my home. She lived with us the last 6 weeks of her life. She was a sweetheart and obeyed the doctors, tried to eat whatever I cooked for her, and if she as much as said ‘I am hungry for…” I made it even though I know she would only be able to eat a few bites. She died in 1992 and I still miss her. She was THE best m-i-l in the world.
And I took care of my husband by myself, until 3 weeks before he died of Alzheimers.
My advice to all who read this is to love them and tell them so before they die because once they are gone they can’t hear you say “I love you, Mom…or Daddy…or …….” I’m glad I did that. I did my best for them all. It’s very hard.
My mom passed away two years ago today. How weird that I read your article on such a momentous day. It brought back a lot for me. Especially guilt for not being as caring as I wished I’d been. I miss her jokes, laugh, voice, etc. thank you for putting all I felt into words.
Thank yiu for writing this. I just lost my mom 12/12. I thiught so many of the things you touched on. I was able to read this without crying, it answered a lot of questions I had. God bless you.
Crystal
My mother passed away a little over 2 years ago and it hurts today just as much as it did then,My sister and I never left her side we stayed with her till the very end,the words my mother said to us when we walk into her room in intensive care unit will stay with me forever she said to us IM DYING ARE YOU MAD AT ME
My mom just passed away on December 5 2019. Almost 2 weeks now. My sister and I cared for her at home in her last few weeks. My heart breaks reading this because its exactly what we went through. I had a better relationship with my mom than my sister did, hers was not horrible, but mine definitely stronger. yet because I work full time my sister was the one primarily there. The last 48 hours I was there. I never expected it to happen so fast even when the sure signs of death were evident. The morning she passed away I was sitting by her side for a while. She was not responsive at all by this point. I played her a few songs from my phone and talked to her a bit. Mostly sat silent next to her and watched the sunrise through her bedroom window. I cant remember what the actual last words she said to me. I only hope she heard mine. I wake up every day and I have to actually tell myself none of this was a dream. With both my parents gone now I feel such an emptiness inside. I know time heals pain, but 25 years ago my dad passed and I’m still hurting so deep from that.
I lost both my parents 2yrs ago. My mom was sick first so my dad , me and my sister all took care of her until she passed. Then my dad got sick so my sister and my self took care of him until he passed . It was the hardest things I have ever done but I would do it all over again for them. I miss them both so very much.
Thank you for sharing. I am currently taking care of my mother and I will try to remember all your words. I’m thankful for every day that GOD gives me with her. I remind myself that even though I’m answering her question for the 20th time – for her it’s the first time she’s asked.
I’m sitting in a hospital room now with my almost brain dead sister this is just as hard as it was for my mom to pass I sit and watch the life support machine breath for her her eyes open and they tell me she is awake she has very little brain activity her stem is the only thing going yet she awake and you want us to pull a plug on this machine selfish of is to keep her because her organs will stop working yet she has life right now I cant pull the plug it’s like murder but her dying slowly isnt fair so if we dont do it the hospital will we r prolonging death with this machine my heart is broken into a million pieces tears are flowing down as I type this isnt just my sister but my best friend god how do I let go
A few years ago I lost a grandfather. I got lost in the world of manic depression and anxiety. I sought help from a mental health counselor before I spiraled too far down my own rabbit hole. But that is not why I am commenting today.
For me this is the hardest things that I have had to face.
October 16, 2019 is the day that my grandma was sent home. Doctors cant help her anymore so the only option that was left was hospice care and family. Over the last few months we have had a few scares but my grandma is a fighter and ever so strong. She still to this moment is fighting. It is so hard watching her go through the motions. One day she has strength and can hold herself up and the next she shaking and slumped over struggling to keep her posture straight. The pain meds are a blessing and a curse. They help to keep her pain at ease but the keep her asleep. As each day passes shes pailer and intakes less and less. Currently not eating (maybe a bite or 2 a day if were lucky) and a bit of water. She always seems to have cotton mouth. Sometimes its hard to talk to her because as each day passes her hearing goes more and more. Her voice gets softer and a lot of words have become mumbles. Sometimes the things that she says is heartbreaking and speaking for myself makes me cry. There are times that I would think that it would be better in a sense if she was gone already (from one of the times that she coded in the hospital because that happened a few times between August through October before she was sent home) not only for the fact that it would be less stressful and less heartbreaking for those of us that are caring for her daily basis and watching her go through this but mainly for the fact that she would be at peace and would not be suffering like she is currently. Once she got home we prayed that she would at least make it a month so that we could celebrate her 67th birthday on the 19th of November. She almost didnt make it but like I said shes a fighter and pulled through. Next was to make it another week to Thanksgiving were instead of doing our usual individual family dinners and came together at her home to celebrate how thankful we were that we had her for one last turkey day. And currently we are praying that she makes it to Christmas next week. This time of year is the hardest to watch a loved one go through the stages of death let alone lose a loved one. Currently taking it a day at a time being thankful for the time that we have left with her. I will share again in the near future as we begin our journey through the greif and healing staged of losing a loved one.
I was at a great place in my life to the point where my counselor thought I was ok enough to not see them anymore. Eventhough I am still battling depression and the everyday war of getting up and doing daily duties I have been out of counseling for almost 2 years now, but I know that once my grandma goes I am going to have to seek that help again.
I lost my mom on monday. Its been a long journey of years being by her side helping with everything. It hurts so much but i truly feel i saw her paib leave as she made her transition. The days while she prepared her conversations with her dead family members was some of the toughest moments. Im finding comfort in knowing i was there and she loves me and i love her.
Hi my name is Heather, I just lost my mom November 10th if November of this year unexpectedly due to a bowel obstruction and she knew it but she waited to long. I was very close to my mom like no other. We did all sorts of things together. She was healthy other than that. But in April my mom lost her husband after 18 years to brain cancer Henry had a Glioblastoma tumor 6 months later he was gone. So ever since he passed my mom was heartbroken and I truly believe she wanted to be with her husband. Loosing my mom is the hardest thing 8m going through. I am 42 and I have MS/ fibromyalgia and other issues. Mom was always there so I can call her and tell her what the doctor had said about my routine checkups. I miss her every day, especially at night. I would call her every morning, every night. I’m so sad all the time. I don’t know if I’m coming or going. I pray it gets easier. I know me I will never get over her death.
I cared for my dad through brain cancer, he passed in October. I’m still exhausted and raw. This experience broke me, the unbreakable woman, shattered to unrecongnizable peices. He couldn’t talk for last few days, but the last words he said clearly that i understood were, “i love you and thanks for everthing baby”
God i miss him.
This definitely hit home with me. My mother passed in April of this year. I was her primary caregiver for the last 6 months of her life. I will say that if you take on that role please realize that while yes it can be a lot of work and at times you will probably feel overwhelmed, try your best not to let them know. I hated myself when I realized I was making my mother feel like a burden. Don’t take even one day for granted. I moved in with my mom so I was with her day and night, but I still have that feeling of wishing I would have spent more quality tie with her. I will say that I was very scared about dealing with the death part in the beginning and had considered a nursing home at one point but I knew that my mother would have been miserable in a place like that so I had to suck it up and come to terms with what I was going to be facing. After watching one of the strongest people I had known suffer and beg for the pain to stop I realized that was by far the hardest thing I had ever done and I felt that I needed to let her know that it was ok for her to go. I laid in her bed with her and held her and told her that she didn’t have to stay and suffer anymore. She needed to be free of that. Not a day goes by that I don’t miss her but I am so happy that she is no longer suffering. I’m not sure if it is because I laid with her and held her through her last breaths or what, but I still feel her with me quite often sometimes and still talk with her even. It might seem crazy to some of you but I don’t care. I just want to say that I feel very blessed that I was able to have that with my mother. Best advice I can give is to take advantage of any time you have with your loved ones because time goes by so fast and before you know it they will be gone. God bless.
Thank you so much for sharing this. I sat with my mom as she took her last breath. It was the most heartbreaking thing I have ever been thru. I now watch as my husband goes thru the same thing. My mother in law is on her final journey. It breaks my heart. I hope him and his siblings find comfort in this story as much as I did.
I too sat with my dying father and it was the best days ever❤️Never felt so close to God in the end of his life
It felt as if this piece was written by me, but my mom and I were best friends, so i lost my bestfriend when she passed away. Every day i wish i could have just one more day with her. She was the most incredible woman I ever knew.
My momma has cancer, and its terminal with a 6 to 9 month life expectancy we just found this out…my emotions are crazy right now , as I read this it was like reading everything im feeling emotionally. I decided to up and quit my job of 10 years 3 months ago ,I felt like I wanted to change up my career choice so I took a cna course which im completing this week at the age of 55… i feel that i was lead to do everything ive done because the inevitable was coming and im suppose to be the one to care for my momma… I too always felt like a disappointment momma always wanted me to be a nurse and I chose to do things my way…thank you for writting this. It validated my feelings ive been feeling since we found out last week that she will be leaving us