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”
The accuracy of this brought me right back to being with my mom and my dad when they passed. Even though my mom died almost 27 years ago and my dad died 7 years ago, while reading this the pain is as raw and real as it was the day the passed. The thing I remember most was the completely helpless feeling of not being able to stop what was happening, as if I wanted so badly to stop time right then and there or to somehow make each and every second I had left with them count more. Thank you for this article it seems to help knowing others experienced similar emotions.
Thank you for this. So many similarities. My sisters, brother and I were with dad as he passed. We washed him. Gave him water and meds. Lotioned him and made sure he didn’t get skin breakdown. Emptied his catheter and noted the changes. Changes in his breathing, his urine. Did our best to manage his pain. His was a peaceful death. I wouldn’t have missed seeing him start his new forever journey-finally pain free. But, yes. It was so difficult. Yet I wouldn’t have wanted a stranger to do it. After all he did for all of us, that’s the least we could do. Prayers to you❤️
I was with my mom when she died, and everyday before that day, and I held her, talked to her and shared memories. My mom suffered from dementia…some days she knew me and some days she wasn’t sure who I was. I came in her room every day and said “Hi Mom…it’s your daughter, Pam”….The day she died I held her in my arms until the light left her eyes….we were looking at each other as I talked to her to the very end. My last words to her were “you brought me into this world and I am going to help you leave this one with grace and dignity”….I gave my mom’s eulogy at her funeral service because I knew it was the last thing I could do for my beautiful mom.
My mom just passed away. I said her ulogy.
She was – besides my dad. Loved m unconditional.
I’m single at 62. No one Dan take her place as a human. Kids, husband, friends, siblings
I to, cared for my mother until the end. It was the hardest and most challenging job I ever had but would do it 100 times again. She was my best friend and my everything. I am forever changed with her loss. She’s been gone 8 long months.
I have lost both parents, my mom was sudden and I was not there. My dad, I sat at his bedside for 4 days, only leaving to go to the bathroom. My nieces and husband would bring me snacks when I refused to leave. On the 4th day, they finally talked me into going to get some dinner. My dad passed before I was out of the hospital. I was so upset. My family consoled me that he did not want me there. I went back to the waiting room while everyone was sayings their goodbyes, the dr and nurses that had been there those 4 days came to give me a hug and let me cry on their shoulders. It is tough, but Ms Bailey hit it on the nose with her article.
Thank you so much for sharing. My brother passed away 9 yrs ago and then it was just me and my parents. A month after my brother passed, I split from the father of my children and moved closer to my parents. My dad and mom have always been disabled so now I could be closer to help them. It was great. But then a little bit more each year my dads health declined a little bit more, then a little bit more and so on. By 2015 my dads health was real bad and was confined to a scooter as he just could not walk anymore. He had been in the ER almost every week. My mom and dad were both disabled but did their best to take care of each other and then I became their caretaker on top of a f/t job and my own family. In November 2017, my dad was diagnosed with sepsis. He had to have emergency surgery to remove 3 feet of intestines. A week later, sepsis was still present. He then underwent a second surgery to remove the rest of his intestines and then get a colostomy bag. I thought I lost him twice because his overall health was bad and the dr said he may not survive. But he made it, he pulled through. He then went to an inpatient rehabilitation to recover and then was told that he would live with that bag forever. He cried like a baby. I told him he and my mom will move in with me and I would care for him. He refused. He said “my daughter will not be the one changing my poop bag for the rest of my life.” Then he signed some papers to put himself in a nursing home. That broke me. My mom was already with me because she needed care and could not be alone. So later that month I started packing up my parents apartment and moving everything in with me. I cried the whole step of the way. My mom didnt understand any of it as she has mental disabilities as well as early onset Alzheimer’s. I went to visit my dad every single day just as I did when he had both emergency surgeries. Some visits I just held his hand as he slept. He was now my child. In April of 2018, the day after Easter I received a call from the nursing home at almost midnight that they were sending my dad to the ER that he was not himself. I then met him there. He was not the dad I knew. His words to me when I arrived at the ER were “why won’t they just let me die? I want to die.” My dad had a horrible time at the nursing home full of neglect and pain which ultimately let him to the ER that night. He was severely dehydrated and kidney failure. The dr’s spoke to me that it would require another surgery and dialysis. Right then and there, I had to make the most horrible, unimaginable, hardest decisions I have ever made in my life. I told the doctors no more, he has suffered so much, he does not want anymore surgeries, no more tubes, no more bags. Please just make him comfortable. He was then placed on hospice and they said it would be about a week. I was by his bedside every single day, sometimes twice. And sat there for hours talking to him even if I wasn’t sure he could hear me. And I always held his hand. Then one day he was awake. His last words to me before he slipped into a drug induced sleep were “I’m sorry I’m a pain in the ass.” I will never forget those words. He always thought he was an inconvenience. And I carry my own guilt around to this day. The guilt that if only he would have let me take care of him, maybe the outcome would be different. Or maybe I should have done research on a better nursing home. 3 days after my dad was put on hospice, he passed. When my brother passed, it hurt bad,but when I lost my daddy, his death took a piece of me with him. Now my mom still lives with me and I care for her and I refuse to even consider a nursing home for her.
This is exactly what I needed to hear. I helped my mom/best friend pass over to the other side on August 23. I am so lost without her! I wish I knew where to from here.
Excellent read. I took care of my mom when she was dying. She also was going between this world and the next. There were people in the room with her that I couldn’t see. She was so beautiful and kind. I miss her terribly. She saved my life in 2013. She kept coming to me in a dream saying “get that fixed. I didn’t know what she was talking about. I went to the EE for a weird tremor in my hand. Turns out I had a large brain aneurysm. After the diagnosis, I never had the dream again.
Took care of my dad for 13 years. The last few years were rough. I always feel like I didn’t do enough. But he was surrounded by family and friends and lots of love.
I’m changed forever. But I wouldn’t have done it any other way.
My mom passed In October of 2017. This was her second battle with cancer. My brother and I were by her side consistently. For the last two weeks of her life. There were days we only got 1-2 hours of sleep. My brother would beg me to sleep and I would tell him no you go I will sit with her. The last 3 days of her life. The hospice group put her on a strict pain medication routine. So every 30 minutes like clock work my brother and I were up giving her medicine.
My mom was very clear with us all her life. Do not let me suffer and if I do pull the plug. She had also said under no conditions were we allowed to hold a funeral or memorial service. Turning off the oxygen tank was the hardest thing I have ever done. I was so worn out but I knew she wanted it this way. She donated her body to science.
It took me a while to not feel dead inside. I shut down. I did not let my husband or kids know what I was feeling till I officially had a mental break down. I think the no funeral or memorial service did not give me the full chance for closer.
But God has really helped me and given me a reason to function again. My husband and kids have also been able to minister to me also.