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.
[ratemypost]
Leave a Review!
We LOVE hearing from you! Submit your question or comment here.
Your email address will not be published.
812 comments on “Caring for a Dying Parent In Their Last Days – a Personal Story”
That was so beautiful! I lost my dad in 2002, but still have my mom. I love her so much,and she’d say the same, but I wish we had a real mother/daughter relationship(whatever that may be) I was with my dad when he passed and remembered wishing our relationship had been more. Both my parents did their best, their parenting skills was learned behavior. From that I chose not to have children and that is so wrong or just sad..thank you for sharing!
This was a comfort to read. My mother passed away not quite two weeks ago. I am divorced and have no children. I never knew my real father, but have a stepdad who trying to be on the grief of the sudden loss of my mother. Your story is inspiring and giving me the strength to seek help and move on. Thank you.
I think the hardest thing about watching my mother die was giving her permission to leave us. My siblings, their spouses, my father, my husband, and I were gathered in her hospital room. I had prayed for our Heavenly Father to show her the way home. No one was telling her she could go home, she was hanging on for us.
I was crying as I went around the bed and laid my head next to hers. I couldn’t bring myself to tell her she could leave directly. All I could force out as I whispered into her ear was, “I know you miss Grandma and Grandpa. I understand.” I just couldn’t get “you can go” out. I don’t know if she heard me, but if she did I hope she knew I was doing my best to tell her she could go home, that we would be OK. Within 6 months my father would join her. On one hand I wish I could have had more time with them, on the other I am grateful neither ever had to be sent to a nursing home. My father was 69 when he died, my mother was seventy two. This year I turned 48, my parents have been gone for 12 years now. More than half of my life is behind me and my end is looming. I am not afraid of death, I am afraid of my children going through the pain of losing their parents. Someday my children may have to work up the courage to tell me I can let go.
Thank you for sharing your journey. My mother passed away from stage 4 lung cancer that spread tumors throughout her body. She was not able to walk 7 days after her diagnosis. She had been in horrible pain for months, eating ibuprofen like candy for pain relief. Her doctors missed the diagnosis even though she kept asking them to check for cancer. She was terrified of cancer, many of her siblings died of it. Her brothers’ raised tobacco. Everyone smoked back then. I was able to take off work and stay with her, about 6 weeks. My mom was 82 when she passed. She was a little firecracker. She had been taking care of her husband too, who used a walker. She helped him shower, she fixed the meals and cleaned the house. She was also working part-time, driving an hour each way, 3-4 times a week. She was the hardest working person I’ve ever known. She’d been through some really hard times but she never gave up. I miss her so much.. Your journey brought back several memories of our last days together.
I lost my dad over nine years ago and my mom five years ago. I could barely read this as I knew everything you just talked about. As time goes by, the loss still feels like yesterday. I celebrate them a lot and think of them just as much. Grief never goes away you just learn to live with it. Don’t dwell in it but live with it. My dad had a beautiful death, the experiences in the end were amazing and I wrote it all down. My mom a peaceful death and I cherish being there for her last breath as she was with me for my first.
I am a nurse, but more importantly I am a daughter. As I was with my dad making the final decision to put him on hospice, I struggled between the nurse and daughter roll. I knew as a nurse, that it was time for hospice. But as a daughter, this hurt deep into my soul. We moved forward with hospice, and had to pit him in a hospital bed soon after. One of my brother’s was in prison, and as hard as I tried, I could not get him home before my dad passed. You see, he went on hospice on a Wednesday evening, and he passed on a Friday night. It was December 23 and we were facing the Christmas holidays. There was no way I could get him home in time. It broke my hard to sit with my dad and have to tell him I couldn’t get him home but I had talked to him several times and his heart was breaking but that he loves him very much. My ither brother is a preacher and respiratory therapist. I had to leave my dad for a few hours for work and let strict instructions on his medications. I got back to his side as soon as I could, disappointed that his meds weren’t given. I didn’t leave his side again. I was the one to administer his morphine and other medications. I was called out by my brother and referred to as “Kavorkiens assistant”. That hurt deeply and I will never forget those words. Still, I stayed by my dad. Just sitting there as he slept, or holding his hand. I rubbed his forehead and told him how much I loved him and that his wife and I will be ok. I assured him of that over and over, as I, at 49 years old, was still daddy’s little girl. He held on longer than I thought he could, but everyone had left the room except me. He wasn’t responsive, but I know the hearing is the last to go. I administered his last dose of medication and told him again that it was ok, my (other) were waiting for him, that he could let go. He took his last breath and it was over. In an instant, the nurse in me left and I was his baby girl, holding the hand of my deceased father. I lost it. The pain was unbearable and I ran out of the room crying out for my brother to tell him. I couldn’t breathe and all but crumbled into my nephews arms. I was exhausted and hadn’t slept in almost three days. I just couldn’t bear to leave him
. I had to call my daughter followed by my brother in prison. That was one of the hardest phone calls I ever had to make.
I did talk with the officials and we were able to get my brother home for the memorial service. It was awful to see him come out in shackles and it broke my heart. But at least he was there for that. I can only imagine what horrible guilt he felt for not being there before:during his passing.
I’m not sure why I felt composed to tell my story, as I certainly have never shared it like this before. Maybe someone will read this and know that they are not alone in this big world as they are struggling with a parent dying. Stay with them if you can. Listen if they talk. Talk if they are quiet. Be strong for them. And tell them you love them as many times as you can. May God bless each of you that took the time to read my story.
Your story is my story, I enjoyed reading this. Sometimes you feel like no one understands but now I see that I am not alone
I lost my mom 6 years ago and as mush as I hate to say it, I don’t remember her voice or her laughter. I was by her side her last few days since she passed super fast. Hate the fact that I didn’t have much time with her but glad she didn’t suffer for a long time. Thank you for sharing this with the world. And I cried the whole time as I read it.
Thank you for sharing. This month will be three years since I sat with my Mom for the last week of her life. She held on and I had very little sleep as I sat by her. I talked , I played hymns and played The Sound of Music movie; we watched this every year religiously. It was a time that I will never forget and as painful as it was, I would never wish to not have been there. As you mentioned the roles of mother and child reversing, I know I would never have left her, just as she would never have left me.
Thank you again!
Fortunately my relationship with my parents when each of the passed away was good. My brother and I took turns staying with her at nighttime; but she wanted me in case she had to go to the bathroom . My brother doesn’t wipe butts-we laugh about that. But on her last day I went back to my parents house and slept for 8 hours as I was exhausted, while my Dad and brother stayed with Mom. By the time I got back is was dinner time, and the guys wanted to go eat and wanted me to go with them. I put up quite a fuss when finally the hospice nurse came in and said for all of us to go and eat together. She either wants you here when she goes or she doesn’t, and if anything changes, I’ll call you. So we went to dinner. The fastest meal I think I’be ever eaten. We went back to the hospice and she was heavily medicated due to her pain. Around 9:30 that night my Dad decided to go home, and my brother and I stayed. At 10:23 that evening my mother took her last breath as she squeezed our hands to say goodbye . It was the hardest thing i’d Ever done to that point. Thirteen years later, my Dad was diagnosed with an illness he was unwilling to treat. He’d missed my Mom so much all those years. He decided to go on hospice. For 7 days he seemed like his normal self, just not eating very much. But those last three days were hard. He had Stage IV kidney disease and stopped all his meds other than comfort care meds. We knew it was near the end and he was at home. He was having trouble breathing so we called the hospice nurse. She arrived around 11:30 pm. Around midnight she told us to try to get some sleep, and she would wake us if there was any change. She came and got us around 12:20 pm, and luckily I was able to be with my Dad as he took his last breath.
Both times it was devastating for me and my siblings. I cried that same cry you described sobbing, hardly being able to catch my breath. For those 13 years my Dad was my best friend! I called him every evening to check on him if I wasn’t able to stop by to see him.
I miss them both terribly, and I look forward to seeing them again some day, but in the meantime I miss them both!