Caring for a Dying Parent In Their Last Days – a Personal Story
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.
I called my brothers to come when Dad was dying. One made it in time and one didn’t. Together we stayed in Dad’s room unless the nurses chased us out. One of us would go get coffee and the other would stay with him. We tried to talk with him but he was in a coma. But we knew he heard our words of love. And we were there for the last breath and we could say goodbye. We held reach other and cried together. Dad was gone.
The hole in my heart took a long time to heal but it did finally. But to this day I still miss my Dad and wish for just one more conversation with him.
This is awesome. We are preparing to move in with my Mom in about 2-3 months. We will be on different floors but only a moment away if needed…not the next county. I look forward to sharing her later years with her daily.
Thank you thank you. My mom just died Jan 2nd now my dad is in hospice…but I live far away. I need to get north ASAP. I dont want my dad alone. I’m just so so sad I can hardly breath.
Thank you for sharing this. This is everything that my siblings and I just went through recently when my dad passed away this n Wednesday February 5th
I am reading all of the comments and I feel like I am going to feel regretful for growing apart from my parents, like it’s inevitable. I suppose I could call them both more and I will. Reading everyone’s experiences reminds me that time is very finite. I am thankful I have a little time left to reach out so thank you to the author and to all that shared. Regret is so devastating!
So glad to read this Peg. It’s never too late to build on our relationships…especially during this difficult time we are living in.
My journey with death began 3 years ago. My Dad was the one who taught me about true Agape Love. I was blessed to know him for 90 years and 9 days. He was so very healthy up until 3 years ago. I never thought about death with him. We do think we are immortal until death makes a visit.
Dad was my hero. A true example of kindness and love. He was firm in his beliefs and integrity. He was always and I mean always there for me. He raised me to be the woman I am today. I will miss him so very much.
I was with him when he died. I had just given him his dose of morphine. In my mind I was wondering “did that push him over?” “Did I do enough for him? Did he know I was there and that he didn’t die alone?” So much self-doubt and what ifs. When I asked John, his hospice nurse, these questions, he told me that Dad died peaceful and chose his own time. I said how do you know this? He said that Dad’s forehead was not frowning and the lines were smooth. His hands and feet were relaxed and eyes closed. People who die in pain and fighting it are not this way.
None of this takes the pain away that I feel when I think of never seeing him again. Or laughing at corny jokes. Talking about God and life in general. Who am I going to ask for advice? Yet I realize that I was blessed to know a truly great man and father. I know he loved me beyond all measure which makes this so much harder to let go.
As I held his hand in death I prayed his favorite scripture, Psalms 23, “The Lord is my Shepard, I shall not want. He maketh me to lie down in green pastures. He leadeth beside the still waters. He restoreth my soul. He leadeth me in the paths of righteousness for His name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil for thou art with me, thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies. Thou anointest my head with oil, my cup runneth over. Surely goodness and mercy shall follow me all the days of my life and I will dwell in the house of the Lord forever.”
I could feel him relax now that I think about it. Odd thing is I only just memorized this prayer 2 weeks before. I felt an urgency to memorize it and it wasn’t until after his death that I found out this was his favorite prayer. I found this website 9 months ago when my Dad first went on hospice and never closed the tab. I hope my journey and story helps others through their experience as yours helped me.
God bless.
I have sat at the bedside of my Husband, my Mother and my Father. None of them were easy. My Husband died at the age of 52 of cancer. He was the first to go. I held his hand, even though he was not awake and watched as his breaths because further and further apart until they stopped. My Mum was the next to go and I had to fly home to be with my Father as we made the terrible decision to turn off the machines that kept her breathing as a stroke had made her brain dead. It was the worst 30 minutes of my life to watch the beeps on the machine continue for the length of time it took for her heart to stop beating, it was so strong. My Dad was with me until he was 93, but the last 3 years were difficult as Dementia started to take away the Dad I had Danced with and sang with over my life. I sat holding his hand and sang all his favourite songs to him as his life ended and I can only hope he heard me and knew I was there. Each one was devastating and I still remember them all in detail. I take comfort in knowing I was with them at the end. How I would love one more dance with my Dad, one more walk with my Mum and one more hug from my Husband.
I always knew mom would die of lung cancer as both she and my dad smoked 2 packs of cigarettes a day since I was born. I kept asking both to at least smoke outside when they got older as they were needing more and more of my assistance as they aged. They wouldn’t listen. Their house reeked of smoke. When the corona virus came to the US, mom started having a bad cough (long story, but found out two months later it was lung cancer). They sent her home with hospice to die per her request. I agreed to help dad care for her. Just prior to going to the hospital they had multiple water leaks (another long story). All carpet needed replaced. Imagine the work that went into that with a house that was packed with STUFF. Their old dog was incontinent and couldn’t even get outside because of the pain (neither would agree to have her put down). Dad’s dementia became 10x worse (or I just noticed it more now that I was there everyday trying to clean up the place and take care of him while mom was in the hospital). After mom came home, dad ordered all hospice out of the house, threatened to walk in front of a truck if mom died, and at one point locked me out of the house. I had to call and get the law involved to help me which broke my heart. Mom told me she couldn’t handle the stress. I had NO support from family as no one could breathe in their house because of the smoke/dog stink/wet floor odor/etc. I basically slept about an hour a day for the week mom lived (which I didn’t even know was possible to go without sleep that long). But I took care of mom on my own and did the best I could do. Dad spent 2 months in the hospital, and now is in a temporary nursing facility the past 5 months (no room at a long term facility for him yet, plus he was recently diagnosed as c19 positive). I truly believe he has had only two showers total in the past 5 months. He calls me daily asking to talk to mom. This entire corona season has been one total nightmare. The only bright light was we had a new granddaughter born one month after my mom died. This if my “Cliff note” version…you can only imagine the entire story. Moral of the story…please don’t insist on smoking in your home if you ever expect anyone to help you. I am very sensitive to smoke smells. I don’t know how I made it through living in that giant ashtray caring for my aging parents for that week. But at least she was able to die at home with me by her side. She welcomed death as she knew she’d be able to see two of her sons (that died 20 years ago) again.
I related to every single thing, every detail, every single thought, action, emotion that you shared in this story. My sister and I together cared for our dad. Lost him Dec. 16, 2020.
I wish you touched on your experience with the death rattle. It is a sound I will never forget, and never want to hear again in my life. But at the same time, it was comforting? That the process was happening and going through way it should be. It was peaceful as awful as it sounded. Then all is silent, all is still.