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”
You nailed it. This has been the best related story of the journey similar to mine. Thank you for sharing.
Thank you for sharing your journey. I took care of my mom and Step father for 10 years. The Longest and Shortest 10 years of my life. There was Joy, Love, Vigilance, Frustration, Exhaustion, Isolation, And Gratitude. It was a bumpy road. But I wouldn’t have changed a thing. I know where she is and I know who she’s with… I did record her one night when she was delightfully confused and I listen to her voice and her laughter. It fills my heart. I understand what your saying and I wish you the best.. I’ve learned to move forward every day.. sometime I have to push myself… but everyday move forward. Love and peace to you! Hugs
I ws with both my parents during their final moments, for me it was both a blessing and a curse x
My mother had dementia and multiple health issues and my father who was 7 years older could not care for her any more. Dementia was a God send for my mother. She had suffered with depression all her life. When she got dementia she forgot she was depressed. She went to a care home, a most wonderful place. She participated in activities she never would have before the dementia. She forgot that I was her daughter but remembered my sister and father. I would stop by after work most days until she had her supper. When the end of her life was near, she could no longer swallow because of mini strokes she was put in hospice. We all came to be with her the last night of her life except my dad who was very frail and he was unaware her time was near. Everyone stayed till the early morning hours but she continued to hang on. I spent the night and read her bible verses in the hope it would be a comfort to her. It was a very long drawn out passing for her. Just when I thought she was gone she would take a big gasp and start breathing again. She did that most of the night. It was my privilege to sit with her as she had always been fearful and I didn’t want her to be alone. My father passed away a week later.
It’s been 2 years since Mom died. Your words are so real. You reflect through your life what she did for you, what you did to her & for her. You think about the sacrifices she made & pray you are honoring her wishes in every decision regarding her care. mother’s last words were, “I think it’s time to go home, don’t you?” There is such peace in knowing where she is & that we will one day be reunited.
I’m 28. My mom lived out her last 7 years with me. And very young age of 50, my mom had a massive hear attack in her sleep. Under the care of a hospital. Who discharged her the day before but made her stay another night. They never gave her, her medications or hooked her back up to her machines. They dropped her check ins from every hour to every 4 hours. She died in her sleep. For the last 7 years I quit my job and cared for her at home. Had a couple small jobs here and there. But her care was too much for me to work as well. She was in stage 5 kidney failure. She was tired. She was sick. She stopped caring. And I had to be the enforwof her meds and diets. As I said I am only 28. And it’s been a month sice I lost her. She lived with myself, my husband and 6 kids. On top of the kidney failure she was severely diabetic, legally blind, CHF and neuropathy. I sat for the last 7 years watching my mom die and little more everyday. To describe it, it’s indescribable. The pain I had watching it. The pain I had watching my kids go through. The pain I still have watching my kids hurt daily because of it. I hurt. The day we buried her, I couldn’t walk away. I couldn’t let them fill that hole in. I couldn’t let her go. I stalled for as long as I possibly could. I still hurt knowing I let them fill in that hole. The day I left the hospital for the final time, I felt empty. I walked out empty handed. I walked out without my mom. I had never done that before. She always came home with me. The last phone call we had was them saying she needed to stay one last night. We said what’s one more night. IL see you in the morning. We said goodnight and we lived each other. That was the final choice nvwrsation I ever had with her. She died alone in a hospital bed. Without me by her side. She hated hospitals. And said she wanted to die at home. Had I told the hospital no. She would have survived. She would still be here with us today. Neglect killed my dying mother. And I can’t ever forgive myself for not making the decision I wanted to make. Watching my mom die was one of the hardest things I have ever had to do. And I will never forget a single second of our journey together.
Thank you for sharing your experience. My sister and I are preparing for this journey ourselves and our hearts are already breaking. I’m 29 and my sister 34. My father is 58 and is suffering from stage 4 Adenocarcinoma with multiple metastasis in the brain. It happened so fast. From the time of diagnosis to his rapid decline of health was such a short period. The doctor told us only months should be expected. How can you put an expiration date on someone? It’s a hard reality to bear and I feel so not ready to go at this life without him. I spent most of my childhood and teenage years being a huge problem child and disappointment. Only the last 8 years or so have really been getting good. My life is taking off now and he will miss so much of what my life has in store. My daughters will miss him something fierce. Especially my oldest. She’s 10 and very close to him. I think the thought of her heart breaking is what gets to me the most. I don’t know how to deal with this pain. My sister lives out of state so comforting each other is difficult. I guess it’s just one day at a time. This is the most I’ve really ever spoke about how I feel about what our family is going through since we found out. I’m like a brick wall straining under immense load. I’m sure when it comes down the emotional aftermath will be catastrophic. Thank you again for sharing. Like you said, death is personal. We all have to deal with it differently I guess.
I struggle every moment of everyday. I helped my sisters take care of our father until he passed 1 year ago in June. The and my mom were married 61 years. When my dad passed my mom becare very depressed. She started making arrangements for her passing. This last month she also passed. They had an amazing love affair we their 7 children, grand children and great grandchildren were able to watch unfold. It has been so soon since loosing my dad to loose my mom. I ach & cry so much everyday. It is comforting knowing I’m not alone.
I have to say I felt almost everything you said happened to you happened with me and my mom. Only thing is I feel guilty for it staying the night the hospice nurse came in. I don’t think in my head it registered what that meant. I thought she would just be there to keep her comfortable for the night with meds. My brother was the caretaker and was there but he went to his room and slept. She was all alone with this strange nurse. I can’t imagine how that felt for here. The nurse called me and said to come quickly…the journey to her home was a blur and full of tears. When I got there I was expecting a semi coherent mother but what I got was a mother with her eyes closed as if sleeping but non responsive. Very short, shallow breathing. No matter how tightly I squeezed her hand she wouldn’t open her eyes. I had about five hours of sitting there, playing gospel music for her and rubbing her arm and swabbing her mouth as she had foam in it for some reason. I was talking to her and just praying for her. When her frail body would slowly gasp for air I had a mixture of emotions. I had to call my brother so he could come in with her as well. Finally the last breath was taken and I screamed PLEASE come back! Why? Why didn’t I stay with her that last night.
Oh wow, I want to say you nailed my Mama almost exactly except she saw George Jones in Montgomery Wards store.
Our relationship took a turn for the worse when my husband passed away 11 years before my Mama. The last 8 were really horrible for the both of us, more so on my Mama. She fell from her bed while cleaning her ceiling fan and became paralyzed. The last 6 years was so sad to watch. She still had he spunk and would tell you what she thought. One day I had gotten my hair fixed and it was perfectly straight. I went to cook dinner for my Mama and she said “she scalped you”. That time it was time to wash it so I did, and went to bed with it wet. If Shirley Temple ever had a bad hairdo it was what mine looked liked. Big, frizzy, and wildly pointing in all directions. I went in Mama’s room to tell her good morning. She said you go right now and fixed your hair. Lol She once told my sister and me while we were enjoying the pool “I sure have some ugly daughters without hair”. I’m sitting here smiling as I’m remembering this, she didnt get to me probably like she would have wanted to.
I really enjoyed reading about your Mom and everything happened to us just as you so eloquently wrote it. It is a very nice tribute to your Mom.
Also my Mama had a brindle / multicolored shitzu named Muffin that became her favorite child.
Thank you for the article and so sorry about your Mom
My mama’s name Floydaine or nickname Dinker.