Caring for a Dying Parent In Their Last Days – a Personal Story

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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 - a Personal Story

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”

  1. That was wonderful. I lost my mom in december. I made myself in charge of taking care of her With my sisters all three of them their help. This has been so incredibly painful. Her words of wisdom today the day she died was don’t cry,everybody has their time and be strong. I am none of those Things in private. To everyone else they think I am strong. And all I do is cry. She was my best friend. She was a young mom. We grew old together.

  2. I finally told my dad it was OK for him to go. I would make sure mom and the family were OK. I told him he was a wonderful father and I loved him. He took 2 breaths and was gone.
    Mom was mad I told him he could go, I told her it wasn’t about her, it was for him. 17 yes later it still rips my heart out. Only my husband knew this story. Thank you for sharing yours.

  3. Becky Kennedy

    My mom recently passed away on 4/23/2024 the day after my 61st Birthday. My mom was diagnosed with stage 4 lung cancer in 2022 she hadn’t smoked in 35 yrs. She started her chemo and did very well with it, no sickness, no hair loss, just a little shaky a couple of days after her treatment. Her Cancer doctor told her was a Rebel! She had a positive attitude at all timesshe would always say I’m not letting cancer win! So for 26 months she was doing good and one day we went to her doctor visit and it was not good news the cancer had started to grow again. So her Doctor who was an amazing I might add said this is not the end for you Shelby we have a Experimental drug we can try she wad all for it because she said I’m not ready to die yet! So 3 weeks later her best friend took her to her appointment because I had to work, it turned our to be a 12 hour day at the hospital but she did well never complained, that was on a Friday. Saturday rolled around and I made my daily 7:30 am call, I could always tell how she felt by how she answered the phone. She hello I said how ya feeling mom and she said pretty good I said great! We continued our talk like we did every day. My mom and I were very close shecwas my best friend, the person I could call for anything. We were Walmart buddies, rummage sale buddies, Costco buddies. We talked probably 4-5 times a day about anything. She was my best friend. So Sunday morning I called her and said do you want to go to Walmart and she said sure I said I’ll call you when I’m ready she said ok. So a few hours later I called her to go and she said we ( her husband of 38 yrs. My step dad ) are at Jennie’s I said ok do you need anything at Walmart and she said no I said ok call me when you get home. Monday her best friend called me and said have you talked to your mom this morning and I said not yet why and she said I’ve tried calling her a few times and she’s not answering. So I said I’ll try her, so I called her 3 times with no luck all the sudden I got thus feeling somethings not right, she only lives around the corner so I ran down there to see her sitting in her chair by the window, I walked in and said mom.Why aren’t you answering your phone? And she looked up at me with this stare that I can still remember, She didn’t say anything. She just kept looking at her phone and then out the window. And I said mom, what’s wrong? Can you talk no response? She just kept looking at me and I thought oh my God, she’s having a stroke! So
    I quick called 911. And proceeded to try and get her to talk to me and the only thing she kept doing was just staring at me.My heart was broken. I had to go in and tell my step dad But I think mom is having a stroke. He was still sleeping He’s 89 years old and was recently diagnosed with cancer and was given 4-6 months to live. So we had been dealing with his Diagnosis also. The ambulance came took her To the hospital Where they did confirm , she had a stroke So they med flighted her to UW Madison. The stroke caused my mom to lose her speech So basically March.
    17th 2024 Was the last Time I was to hear my mom’s voice or talk to her on the phone. She remained in the hospital 42 weeks And then she was moved to a rehab facilit And I think once they moved her to the rehab facility , she gave up. She remained in the rehab facility for eleven days. When I asked her if she wanted to go home or come To my house with me She kept pointing at me and saying you, you. My stepdad could not take care of her because he was dealing with his own cancer so his daughter stayed with him. And took care of him while I took care of my mom. But before I brought her home from rehab, she made a couple emergency room trips for abdominal pain, but she was having. And we would later find out the cancer had spread to her stomach and she wasn’t able to eat.She was basically just starving to death.It was the hardest thing i’ve ever had to witness. I did bring her Back home to my house And hospice came in to help with her. I would sit up with her at night and sing to her and play music that she loved when she was a teenager. She would try and sing with me. And I would ask her mom. Do you want me to sing you a song? And she was able to say no That made me laugh Because I definitely cannot sing. I would say prayers for her. I would brush her hair She loved having lotion. Rubbed on her arms and her legs and her feet. We would bring her dog in and put him in bed with her she loved her dog. We put a camera in the room so we could keep an eye on her at night. I barely slept. I just watched the camera and would get up and check on her every half hour. And just sit and hold her hand and Stare at her face, Is and watch her breathe.
    I never want to forget that. As her time on this Earth was coming to an end it made me so sad.
    It was the most difficult thing saying goodbye to my mom that I ever had to do. I prayed that she would not pass on my birthday. She passed away Quietly in her sleep at 4am the next day. I miss my voice I miss our daily talks, I miss everything about my mom, but I know took good care of her and made her feel safe and very loved until the end. My step dad passed away 2 weeks later. It’s hard to believe that they are both gone no my mom 77 and my stepdad 89. But they are both in a much better place, no more pain. And I also lost my mother in law 2 mother in law prior to losing my mom and stepdad so 2024 has not been a good year for me. I just take it one day at a time. God Bless.

  4. Zoraida Jones

    Im sorry for your loss. Im so happy someone wrote about death. Its always been scary to me of how death would come upon me. We take so much for granted in life its unreal. I hope you live by your mother’s words . And live life to the fullest. May god bless you

  5. So helpful, so insightful, so beautiful, thank you so much. I am sharing it with others in the same situation.

  6. Andrea Platrr

    Beautifully written testimony of writer’s experience with her dying mother. I could feel the love she had for her mother, through her words. I am going to share with my children.

  7. My mother is about to go into hospice. I am so lost, I am doing this completely alone. With nobody but my 13 y old son. I don’t know how I will survive this.

    1. janie, do you have CLOSE friends where you live? confide in them as you need to unburden what is going on and how you feel.

      continue praying to god or whoever you believe in. i turned it over to him many times for all my loved ones during the end of life.

      does she have a favorite book, etc. that you could read to her? she does hear you even when the time comes she can not speak.

      hugs and prayers to you as we all go thru life’s journey to heaven where she will be greeted by her immediate family members.

    2. i forgot to mention i’ve been with 5 family when they passed away.

      afterwards, hospice or local hospital has bereavement classes; go they help a lot.

  8. Beth Richmond

    I recently lost my mom. My father passed over 20 years ago. My mom was in a nursing home and passed away a couple of weeks before her 102nd birthday. A lot of what you said resognated with me. She broke her left hip 8 years ago and they were able to repair it. Last year she broke her right hip. I saw her the day she passed away. I went to visit her after church. She was on atropine and morphine, she was so out of it. I talked to her for a while. Told her I loved her, kissed her and said I would see her on Monday. I didn’t know she would pass away an hour later. This will be my first Easter without her and my first birthday on Tuesday without her. Sorry this is so long.

  9. I watched both my parents leave this world and I would want it no other way. For my mom I slept with her , held her hand and was there for her until her last breath and I’m still so sad and crying as I write this , she was my mom friend and older sister all in one she gave me the best life ever I miss her like crazy and can’t wait to hug her again , my dad was a little different, he was mad angry and said things that hurt but I know that he loved me and couldn’t understand why he was upset in his last moments, I stayed with him until I could , I left to go home to rest and 2 hours later they called me he passed. Again crying, I try not to think about what I wrote too much because this is what happens I get to sad. But I hold them in my heart and talk to them everyday until I see them.

  10. Thelma L. Woodcock

    I am the Mother. My husband and I are in our twilight years. Of course I want my daughter and son by my side but not because I wish it but because they want to be there.