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”
I lost my mother last Friday, so reading this article was pretty raw and familiar. Thank you.
I too, sat with my mom through her last months, and weeks on earth. I knew without a shadow of a doubt where my mother was going when she took her final breath. She did too and she longed for it. She had lived the last 20 years without my dad and the last two years without my brother, she longed to see them again. She’s with them now in heaven!
I know only too well, I lost my parents both in 2008. My mother and I both were try to help my bed ridden dad and at the same time, my mother was Fighting kidney cancer. My dad died shortly after my birthday, in February and mom died November 21. Mom started forgetting who I was. It was and still is very difficult for me as I am still dealing with depression my thoughts go out to anyone else having to go through this. ❤️
My father was in dialysis and had strokes that would put him in a coma. We took turn at his side to rest and for my mom to rest. When we were told he will die soon we all arrived to the hospital at his side. I know he heard our voices because his heart machine would start every time my mom spoke and cried. My dad (my first love) had suffered so much with diabetes and strokes and being in coma a couple of times. My last words to my dad was “Daddy we love you and will take care of mom, please go to heaven and Rest In Peace with no more pain. Be our Angel. “ he took his last breath after that. One of my sisters and I would tell him to go to Heaven. We knew it meant he will no longer be with us but it also meant no more pain for him. We spent 5 years of going back and forth to hospital, taking him to doctors, sleeping in the floor at the hospital not waking to leave his side. I love my Dad and miss him dearly, his little funny dance he would do, but we can’t be selfish to keep him while in pain.
There is no easy way to say goodbye. My mom was very active in her early 80s and not supposed to be hit by a bicycle that left her brain dead due to blood thinners. I remember the place and time that I got the call about the accident. Our lives would forever be different without Mom who was always there for her children and there for her grandchildren as thei #- fan. As I made my way to the ER I couldn’t believe what I was hearing from the Dr. Mom would not recover to function on her own again. As they led me to her bed being kept alive by a ventilator so many thoughts and feelings run through me. Tears streaming until there were no more holding her hand for 3 days waiting for a sign that she would return to us. I recalled our last day that she was actually with us. She was so happy after her weekend with my sister and daughter watching my niece play college field hockey. She was looking forward to the next game even buying a new jacket supporting the team. I stopped by her house to have coffee with her and brother who also stopped by that day which was unusual but added to her happiness that day. Her next day was filled with some usual routine. It was Election Day and she was helping my younger sister who had a stroke a few months earlier by picking up my other niece after school . Then it happened a 50 something man with a patch on his eye and headphones on riding a bicycle knocks her to the ground as she was walking across the street – what a freak accident. I miss hearing my moms voice and everything that we shared together. As I held her hand for 3 days before she left this world so many memories flooded me and I could not imagine that there would be no more. How I wanted for her to see her grandchildren grow into the fine adults they are and she would be so proud of as she was that day. My son is getting married this week and it is also 5 years this month that she is gone and life goes on but having all the fun times we had helps me get through each day. Love and miss you Mom every day!!
December, my Momma will have been gone a year the day she died it felt like someone had ripped my heart out you try to put your life back together but you can’t no matter how you try it never goes back right, you are forever changed there is not a day goes by what she is not on my mind. I took care of her and will be forever grateful that I had those last few months with her, we shared a lot of laughs and a lot of I love you. Some days I am right back to that day and the pain is almost unbearable. I miss my sweet Momma so very much. I know people mean well, when they talk to you and say it will get better, well no it doesn’t get better, bearable maybe but not better. If you have not traveled this road you cannot know what that pain is like.
When my mom was dying, my experience was just like yours. Everything you wrote made me feel better if that makes sense, to know someone else did and felt just like I did. Thank you so much for sharing your story. Hugs and blessings to you… sincerely Lori
I lost my dad in 2011 cancer ravaged him very quickly. I still remember that day as if it were yesterday, he passed at home with all his family the way he wanted. I can still smell the aroma of the room that day, I can still see his chest rise and fall and as I took his hand and told him it was ok for him to leave I still feel the warmth of his fingers wrapped around mine. I watched him take his last breath and my heart broke and to this day still breaks every time I think of him he was my hero and losing him was one of the hardest days of my life. His last words were “I’m not scared of dying I’m scared of what I’m leaving behind” those words will stay with me forever and something I always think about especially as I age, I look at my children and it scares me to think that at some point I would have to leave them. Such powerful words at such a hard time.
Your article was very truthful and touching. I took care of my mom the 8 months after she was diagnosed with stage 4 lung cancer. Watching my wonderful loving strong mom wither away was the most difficult thing ever. I also went through alot if feelings you experienced. My mother was going through treatment for cancer when she found out she was pregnant with me. She was told she would not live to see me go to Kindergarten. She died on my 31st birthday. She and I had a very strong bond. She died in 1992 and I miss her every single day.
I read your thoughts and I’m right back by my mother’s bed… Watching her leave and willing her to stay… Thank you for saying what I’m feeling…. The two years after her passing have been harder than I care to acknowledge and easier than I can comprehend… But now as I’m awaiting the birth of my daughter, I’m 17 weeks pregnant and found out I was on the anniversary of my mother’s passing, I miss her more than ever and wish she was here…. I know she is watching our every move…. I’m thankful I had her with all our faults… I pray that my daughter and I will be able to share as much as my mom and I did… Life in its big circle its wonderful and devastating all at the same time.