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 am suffering through the one year anniversary of loosing my mom, the last of my parents, and my best friend. I still find myself picking up the phone to call her or sending a text to check in. I was privileged enough to care for her her last year as COVID had me working from home. I spent every minute I could with her and those instances I went home I made sure there were always 2 caretakers or friends there with her. I was on my way back to her house when she took her last breath with her sister and best friend by her side and although I will never forgive myself for not being there, I know she did not want me to see that happen. To this day I wonder what I could have done better and if there was anything I could have done to keep her with us, however I try to take comfort in the knowledge that she is where she wants to be, back with the loves of her life and watching over us all as we try so hard to move forward. Thank you for reminding me no matter how alone I feel in this journey, there are many who travel it beside me in different ways. Prayers for you all.
This just turned on the waterworks for me. I was with my father when he passed from cancer. It was very peaceful and pain free. However due to Covid shutdown my mother passed alone from Alzheimer’s. That will bother me for the rest of my life.
Thank you for sharing. It touched my heart. It touched my soul. My Dad died 7 months ago. I’m ok. Not really. He was hit by a car that was exiting the A fast food drive thru. He was getting ready to step up on the curb of the entrance. Someone was looking down putting her coffee in the drink holder, as she drove off. She didn’t see him. It was sudden. It was shocking. He was rushed to the hospital. When I arrived he recognized me right away. He spoke to me. He called me by name. We talked. They thought he would be fine. 3 hours later he was in a Coma. 3 days later he died. I rarely left his bedside. My husband & brother insisted that I go take a break. I left to go home, to take a shower and change my clothes. I went back to the hospital and was there only 3 minutes, sitting by his side again… and he just quietly stopped breathing. He was waiting for me to get back. I’m going to be ok. Just not yet…
It’s difficult being a caregiver to your parents. I held my mothers face in my hands as she took her last breath. I had my stepfather’s face in my lap as he took his. I had just turned around when my father passsed. I was grief stricken sad heart broken as they left this realm for a different one. Each experience was sacred in its own way. But not anywhere or even close to loosing three of my children. That is anguish you can’t express you know you can’t live through it. Somehow you live but life will never be the same. I changed, with each loss Tom Petty in his song makes a powerful statement. You’ve got a heart so big. It could crush this town. I can’t hold on forever, even walls fall down. Yes, the do. One day what’s left will fall.
I was reading this article with tears in my eyes but with joy as well. As I remember my mother’s short sick bed and being by her side. 15 December 2021, looking back I am grateful God granted me the time I spent with her, He allowed me to hold her hand as she left this world. I realized nothing makes you grow up as fast as losing a parent. I cherish every memory I have with my mom I miss her tremendously but at the same time grant her the rest. Forever in my heart Susan Dyker
I lost my dad 13 years ago and the day he passed will always be fresh in my mind forever. We had lots of laughs and just as many tears. I will always remember he told us about this big turkey he killed and how it was in the paper and if we saved it..there was no turkey but we didn’t correct him. He told the story with such excitement and we were excited for him. If he requested a certain food we made it even if he only took a few bites. He wanted oatmeal with fruit loops, and he got it. As hard as it was I am forever grateful I was by his side when he became an angel.
Thank you so much for writing this. You hit it all perfectly, and I can relate to almost everything you said. I was Daddy’s Little Girl, always. My Dad passed peacefully from this world at 8:30pm on December 21, 2021. He had suffered a massive stroke December 14, 2008 and it had been a roller coaster of a ride for 13 years. Thankfully more good time than bad. My brother & I cared for him all those years the best we knew how. We had wonderful, caring Doctors that helped us give him the best quality of life we could. As Parkinson’s(secondary to the stroke) set in things began to slowly decline. When he fell and broke a hip October 24, 2021 it spurred the Parkinson’s and his swallowing became severely compromised. On November 21, 2021 he developed septic pneumonia and told the ER Doctor to help give him a chance to survive and chose to go on life support. Worst moment of my life, walking in and seeing him that way. The day after Thanksgiving he came off life support and it was a miracle. But that trauma finished sending the Parkinson’s into hyperdrive and left him without much muscle control. In December 17 we were back in the ER due to seizures. The morning of the 19th he admitted he felt like he was dying and chose to go on comfort care. Dad & I discussed how neither of us was ready, but his body was done. He wanted nothing more than to see his Grandson make Eagle Scout. I told him God was going to give him the best seat in the house, and he’d be there every step of the way to help guide him to and through his Eagle. We told each other how much we meant to each other and loved each other. He throat muscle were failing fast and speech was becoming nonexistent. My brother was by his side the day before he passed and I spent that night and other nights and several days at his bedside over the course of those 13 years prior to his last night here on earth. I had slept next to him and was by his side all day. Early in the evening his breathing started to become shallow, and by 8:30pm he took his last breath. It was just him & I there in that room and you’d think this would be the worst moment of my life, hardest yes, not the worst. For I knew God was there with us as well. I could feel the peace in the room as he slipped away into God’s hands and eternal rest. The grief set in after his funeral two weeks later. It was horrible. Then one day as I was taking with a friend about losing him I realized he had been my strength and I had been his. I missed that comfort and strength. I still do, but now I know how to go forward.
Thank you for writing this. I needed to read it and hear that someone else had almost the exact experience I had with my Mother as she passed away. It is something that needs to be talked about more and while I write this through years. I smile because I am grateful I was able to be with her in her last days and hours. I am blessed that she was with me when I came into this world and we were together when she left it.
Thank you for sharing your story. I lost my Dad Nov 13th of this year, not even a month ago. I have taken care of him for the last 6 years and now I have a huge hole in my heart, I dont know what to do with myself, feel guilty for not being there when he passed. I just know he is pain free and able to walk again along side my mom. My mom passed away at the age of 42 from breast cancer 32 years ago.
Thank you so much for sharing this. My mom passed away just three months ago. I felt many of the same things you described here. Once you go through this, nothing is the same again.