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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797 comments on “Caring for a Dying Parent In Their Last Days – a Personal Story”

  1. Lynn Lumsden-Singleton

    I lost my precious mama April 3rd 2022. She was 96. She got to die at home just like she wanted to and I am so honored that I moved in with her the last three months of her life. I was the baby and her only daughter. My husband and I are raising our granddaughter who is now nine and she also moved in. My husband was very supportive for the most part as she was like another mama for him. I still cry every night before I go to sleep. A part of me went with her when she took her last breath and I’ll never be the same. I think I did the best I could. I could’ve done better and I wasn’t sitting there when she passed, my brother was and I regret going home to rest after all those months of being there with her I wasn’t there for her last hours. I’ll always regret that!! I miss her saying “morning love.” I miss her hugs, her smile and her smell. She was a great mama and I’ll never be what she was but I do see her in me everyday. Thank you for sharing your journey and letting me share a little of mine!!

  2. Thank you for this I lost my mom November 2nd after only 4 weeks of knowing she was sick. I’m heart is broken. The pain comes in waves that never cease to keep crashing. I don’t know if we did it “right” but we did our best to let her go in the most beautiful way possible. I share your pain. Til wd meet again is all we have in the end. She was loved like no other.

  3. I’ve been going through this process with my mom all. There have been so many changes. We were active and going to the mall last January. Today she can’t help herself out of bed.
    I stare at her a lot. I watch her breathing while she sleeps. I am waiting for her to talk to me. She’s quite. We’ve always had a speak only when you are spoken to relationship. Parent to child. I know that I am not a child, although, I can’t get myself to unlearn that respect for her.
    I wish her peace and comfort. In the same breath I don’t want to let go. I will and have told her so.
    I don’t know what the next day or hours have in store for us. I can just keep her as comfortable as I can and be here.

  4. Cheryl Miller

    I just lost my momma 3 weeks ago. It has been one of my darkest moments. She has lived with me for over 30 years. But i was her caregiver for the last 6 years. I struggle with the fact that I missed being the daughter and I spent most my time caring for her. Did I love her as a daughter. I missed those conversations and time just being together. I have many regrets. But I am most thankful that I was able to be by her side and give her comfort whole waiting for Jesus to come for her. She was my whole world and I miss her terribly. So if you still are lucky enough to have your momma. Call her, listen to her and love her because you never know when she will be gone.

  5. When my parents died they were not able to speak. That was really hard because you don’t know if they are scared, happy, sad. It us so hard to know what to say or if they understand what you do say. My Mom passed first in her sleep suddenly. None of us were with her except Dad. Dad had parkinsons and one day he knocked over his wheelchair and hit his head on the end table. He had a massive bleed which was inoperable which made him speechless. I slept in a chair beside him in the hospital. I could not leave. When it got close to the end I went in to say goodbye. I told him it was ok and he should go see Mom. A tear appeared by his eye. He looked at me with such sadness as I held his hand then he closed his eyes and he was gone.

  6. I am in the process of losing my father… I have mourned him before his passing… and I will again when he does. He had a stroke that stole his speech, his mobility and his strength… he his not my rock anymore, I have to be his. I am losing my mum every day to the pain, the frustration and impotence of seeing him like this and the physical exhaustion. She is ageing fast, losing her spark… I go there several times a day, cook them dinner every day, help with physiotherapy, spend whatever time I have with them. It never feels enough.
    I also have 5 children and a house to attend to, a uni degree on the final research and a work course to do. But somehow God felt I could still handle more and took my uncle (and godfather) and left my Nan for me to look after ( my mum has her hands full). Her dementia worsened with her own grief of losing her son. She lost her mobility and lives between this world and the past… she was taken to hospital due to health issues and now I add to my day 2 hours there, feeding her, translating her to the nurses, holding her hand and listening to fabulous histories she tells…
    I was working for my sister’s company when she dismissed me for not letting her know when I was on the job (bearing in mind this was a flexible remote part time and I kept my level of performance) so I lost my job (which was a blessing in disguise with all this) and my sisters cut ties with me and neglected my parents and my Nan in a time family should be helping out.
    I know all will fall into place one day but this has been the worst 5 months of my life…
    For anyone out there going through it just take one day at a time, enjoy every little moment with the living and the dying, make happy little memories you can save from this storm, be kind to yourself and others. Love is always the answer.

    1. Thank you for sharing your journey Sara and to many others I’ve read.
      My mother is 95 yrs. and her questionable health at this time comes after the Feb. 2022 loss of her 42 yr. Life Partnership with whom I lovingly refer to as her boyfriend, this partnership began 2 yrs. after our father died at the young age of 55 years. Our mother remains the stronghold (with faith in the Word of God by maintaining her trust in our Lord Jesus) that everything works out for the good of her 7 children their spouses, each of her grandchildren, and great grandchildren by continuing to remain solid in her faith and prayer life for her separated granddaughter, nieces, nephews, extended family, friends and neighbors. She knows not a stranger and is the party of every life event. In my eyes life had not been kind to you yet I never heard a complaint as she moved through with the Grace of a Saint with every twist and turn life could rolled into her lap since she’d turned 19 yrs. of age. First with the marriage and birth of her first son then the unexpected death of 1st husband by age 19 remarried and with the birth of yet 6 more children and death of 2nd husband by the age of 51 years of age experiences now the lose of 3rd and final (man) love (lasting 42 of her life years) of her now 95th year, she’s not rebounding and emerging the stronghold I’ve forever seen and leaned on. I know this sounds selfish but it’s all I’ve ever known and I am recognizing the shoe I will never be able to fill. However with your words of strength and encouragement, I can see my place in the midst of the decline in health and I have hope that this time I now spend with my mother will sustain me until we meet up again in another place much better than this present time. Mom your heaven awaits you and I am here for you unconditionally as you have been here for me all of my 67 years. You’ve lead each of us to this honor of knowing and trusting in God through Jesus and all respect to you for teaching us the right way . It’s been fun, it’s been tough, it’s had its learning curve but it’s always been real because that’s who you are, a very Genuine and Real individual that God loved first and shared you with us through our lives.
      No regrets yet with all due respect and love, you are an amazing woman and will be missed by all when that day arrives to us. We know you will be fine and we assure you we will be fine for that is what you’ve taught all these 95 years by your good life.
      Respect and love on your journey home Mom, Peace is with you, in you and holding out his hand to welcome you Home.
      Rest now beautiful Lady in the arms of Jesus.

  7. This is exactly how I felt! There’s no difference in the least bit! Only difference is I was resentful towards my Sister because as an RN and right around the corner from my Moms facility she barely even went. I’m trying to move past that because it doesn’t help the situation at all and it keeps me in bondage of the past with the inability to move forward to the future. I dream about her all the time and the dreams are vivid and weird. I miss her so much it hurts.

  8. My dad died last year, he had a long battle with Parkinsons. Sadly, covid stopped me spending much time with him for his last year of life as I was living in another country with very strict travel restrictions. I didn’t get to be with him in hospital he stayed in for his last month or the care home he was sent to for his final weeks. I am grateful that the doctors allowed us in to visit when they realised his time to die drew close, which my mother had failed to prepare us for. I’m unsure if she was intentionally holding it back from us or was in denial. She was the only person visiting him in hospital. The care home were surprised that my brother and I were unaware on how unstable his condition had been when he arrived with them.

    I visited him as much as the care home would allow given covid restrictions. He was unable to eat, drink, talk or move by the time I was able to see him. Despite this I talked to him, recounted funny stories, teased him in the way he would have done if he was able to talk. I held his hand, washed his face, stroked his soft silky aged skin.

    Most of those last days he stared into space around him, not present with us in the room. My family preferred fleeting visits as they felt he was unaware they were there, I did not feel like this. I visited as much as allowed and stayed until they threw me out. I managed to get him to look into my eyes, mutter that he loves me and an attempt to laugh.

    My wishes were that I had got to see him more those last couple of years as I can’t help myself thinking he wouldn’t have deteriorated so quickly. I wish I’d got to see him deteriorate so it wasn’t such a shock and then I may have been ready to let him go. Lastly i wish I was there to hold his hand and comfort him as he took his last breathe. Its hard not to be bitter about all those things. I didn’t want to let him go.

    I’m grateful I got to spend a few hours with him in his last week of life before he died. In grateful he’s not suffering anymore as he was a strong man who hated this disease for making him so weak and dependent on others. I’m also grateful he gets to be with his family as he was the last person in his family alive, he will be so happy to be with his siblings getting up to mischief no doubt and get to meet his dad who died before he was born.

    Life will never be the same, we had our struggles but we were so close, and I feel nobody will ever be as close to me or understand me. I love my dad and always will.

    .

  9. Veronica Kile

    I too was my Moms caregiver, toughest work in the world but I’d do it all over again,, Mom was tough an on me too but I showed up an stayed every day an nite with her, the exhaustion was heart wrenching but I know she appreciated it an I would say”You did it for us kids”.
    December is a very hard sad month as she passed in early January, lots of bad meds thru Hospice an lots of hollering thru the nites as I’d fly across the hall to calm her an agree with her on her stories! It doesn’t get easier so glad my Husband an I kept her in her home till She passed, God rest her soul , she had so much pain that’s my only comfort to know she’s not suffering, I seen myself thru your story! THANKZ for sharing an THANKZ for being there for your Mom too

  10. Ashley Evridge

    My father was diagnosed in January with stage 4 pancreatic cancer which had also grown in his spine, groin, liver, ribs, kidney and brain. We started aggressive chemo and he also started radiation which his body didn’t react too. My mother doesn’t drive and my brother works a full time job so I was his way to get to the doctors and hospitals, to me it was the best time spent with him because we would just sing and laugh like we used to when I was a young teen. After his last chemo, they sent us straight to the ER and from there he stayed for two weeks and was unconscious almost the whole time. My mother and I decided that he needed to come home to spend his final days with his kids, his wife and his grandsons! I finally had a baby June of 2021 so he did get to spend a year knowing his grandson. We got him home and we got hospice to set everything up and he was still unconscious that day/night! I was giving him his medicine to keep him from being in pain every 4 hours. I never left his bed. I stayed in his bed with him, I was scared; I didn’t want to leave my daddy. I was my daddy’s girl and I still am. My dad went to be with the lord at 3:27 am on May 27th of 2022. 4 days before my birthday and 7 days before my sons first birthday. My dad fought so hard, but cancer is the most silent, deadliest disease a person can fight!! My dad was my absolute best friend and the feeling I’ve not being able to hear his voice shatters me every single day.

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