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 walked this road twice. And I thought my heart couldn’t break the same when my father was dying less than 5 years after my mother but I was so wrong. It broke worst than the 1st time because I realized after it was over I would be parentless. Many days I felt like an orphan (truth is many days I still do). My mothers death was after many many many years of suffering due to a massive stroke and aneurysm so honestly i prayed for death at the end because I hated seeing my mommy suffering. My fathers death was after a quick bout with Cancer there was less than 6 months from me being told about his Cancer to his death. I’m the youngest of 3 and each time I felt my parents were not letting go trying to stay in this world and suffer for their children and grandchildren. Shortly before both of their passings I went to visit them alone and “gave permission” for them to leave this earth. My mother was comatose for 10 months before passing so there was not much of a journey other than her health slowly declining, but my father I watched and went with him through every phase of death. Sometimes I question if he ever really accepted it. The night before my fathers passing he began speaking to people who had already passed on and it was then I knew that his time here was coming to an end. I did not have perfect relationships with either of them but when the end was near none of that mattered to me and I hope it didnt matter to them. On January 22 2014 I became motherless and on October 3 2017 I became parentless. I cant tell you how your walk will be but I can tell you that you WILL walk this sad but unavoidable road. Until then please cherish your parents. If they call you for small or minute things make the time because one day those calls will indefinitely cease.
Renee L Smith and Willie J Smith Jr I love and miss you two so very much and I pray that I am making your proud. Please kiss my granddaddy for me and save me a spot
Love your kid (the perfect one lol)
Nadene
I was with my mom 2 months ago as she went to heaven. She waited until I had gone to bed, and I was called as she took her last breath. She was calm and restful. Thank you for your story. I was blessed to be with my father when he left this earth as well. Peaceful times.
On September 25, 2018 it will be a yr that I lost my dad to pancreatic cancer. It happened very quickly one day he was fine driving his semi truck from California and 5 weeks later I made it in time to for him to give me 6 amazing hrs of conversation in which I did not realize would be our last . The final stoke took this from us as I was talking to him. So all we had left with on him this earth was one week as I I held his hand and talked to never leaving his side. My father was an independent man and never wanted fuss we decided to tell him it’s ok you can go dad we will leave so you can and we did we went home and exactly 2 hrs after we left he passed so I know he was there and he heard us all week he didnt want to leave us while we were there . As I’m coming up on the year it’s been rough all the first without him and it still feels like yesterday and how I miss all those calls from the road thank you for sharing you experience
My dad died twelve years ago of a massive heart attack. Very unexpected, he passed quickly. One minute here…the next minute…gone. I screamed in agonizing pain. There were no goodbyes, no “I love you” or “it’s ok.” Nothing. What’s interesting is that two weeks prior to his death, he was sitting across the room from me and we locked eyes. His gaze met mine and I knew. I happened to be eating lunch and it shook me so bad that I got choked. My mother literally came and had me spit out the food so I could catch my breath. Daddy told me to come to him and I crawled on my hands and knees to get there. And I wept. I fell at his feet and wept. I begged him not to go. He stroked my hair and said, “it’s gonna be ok. I don’t know when it will happen. But don’t be afraid. I am excited to meet the Lord.” And then he quoted that verse, “Eye hath not seen, nor ear heard, what God has in store for those who love Him…”. Two days prior to his death I went to visit him in rehab where he was recuperating from a wound that didn’t heal correctly. He had just had a shower and smelled of that cologne, “Paul Sebastian.” It was heaven. I snuggled up next to him and we laid there watching Gunsmoke. No words. Just pure love between father and daughter.
Twelve years later and my heart still aches for him. And I am taking care of my mother now who has Alzheimer’s. I know I have this road to walk with her. And there are times when I think I cannot do it. I just can’t. But then I realize I must. This is my best friend in the world. And yes, the parent has become the child. And yes, I sit by her bed and watch her breathe. Her pain is great. And it breaks my heart.
Thank you for sharing such a real and poignant story. You are right…we all have it to face. I hope and pray I learn from this experience so that I can communicate with my children and spare them at least a little bit of heartache.
God bless you.
Thank you for sharing. I lost my mom almost 17 years ago – 3 weeks before giving birth to my second daughter. To say the stress was overwhelming is an understatement. I hadn’t even chosen a name for my unborn daughter when my mom passed and had to come up with one while writing her obituary. Kelsey was named after my mom because in Gaelic kelsey means “brave”. The first two maybe three years were a complete blur having by then three kids and no mom to guide me. Many hugs to others who have lost their moms – it’s still heartbreaking.
I can relate to do much of your story. My mother passed away 4 months ago. With the help of 2 sisters and 3 granddaughters and hospice we were able to keep her at home. I am so glad that I was able to spend those last few months with her but at the same time, much of that time was the saddest watching her fade away a little each day. She had numerous health issues but the Dementia caused her to sometimes be very combative, sometimes spells of crying and not knowing why or crying for her mother. Those were the hardest times because we were not able to comfort her and it breaks your heart. You just want to take all of the pain, confusion, and suffering away but you can’t. You give everything you can but, in the end, you ask yourself if you could have done more. You wish you had been sometimes more patient, sometimes more assertive, sometimes just more “there”.
It has been a very hard time for all of our family and we are still trying to figure out how to move forward without her. She was such a big part of her children and grandchildren’s lives. Taking care of her during the last year of her life and especially the last 3 months before she died was an honor for us all and , as hard as it was, we wouldn’t have wanted it any other way. We miss her so much every day.
Thank you for sharing your journey. You allowed your Mother to leave this world with peace and dignity. I only hope that I am able to do the same for my Mom.
I just lost my dad july 13th. He was diagnosed with terminal cancer in march 2019. I livednext door to him so i did everything for him too. We crossed all kinds of personal boundries. He mived in our house 3 days b4 he passed. He died coming out of tge bathroom after shouting, “hey dale”. Im comforted that i was who he thought of for help when he knew he was in trouble but troubled by the thought, did i do all i could. I know i did. It felt good to see you had tge same concern. I relive that night every day, the emts, firemen, my wife, i just cant get it iut of my head. I miss him so much. He was 86 and i had been with him since i was 11, a rear after the divorce. It was always me and him. Thank uou for tge article.
This is one of th ed hardest things to do set and watch them pass …I lost both parents on 2017… may some peace be we ith you.
I am there with you in some of the aspects of the death of a parent my mom was my best friend bar none. I discovered early on that I was gay there was never a change in her or my dads feelings toward me . I did all the same things you did we had long talks. Its was the best and the worst of times miss her so much her voice smell touch. But I will remember everything till I die . Love your story Love to you Kevin