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”
Just lost my husband. The experience is not that different. Hurtful and never feeling i was doing enough.
Tha last words my dad said to me were “love you more” as I walked out the door to run errands. Little did I k ow those would be the last words he’d ever say. Later that evening, he took his last breath with mom and I in the room.
This past year has been so difficult for me, mom and I took care of my dad…my brothers stayed away. As we come up on the day of his passing, each day is like reliving those final days all over.
Thank you for sharing your story.
God Bless
My mom died when I was 16. It was a few weeks before I went into my junior year of high school. I called the hospital everyday to get an update and make sure she was okay. I went to see her as much as I could. It was only me and her all my life. I remember the day she died so clearly it hurts me..I was eating lunch in the cafeteria at the hospital and the nurse came down to tell me my mom was going to die soon and she was waiting for me before she did. I rushed to her room and as I held her hand and begged for her not to go, the monitors just beeped and she was gone. For almost two weeks she was in a medical induced coma so I was not able to talk to her at all. 11 years later and I’m still not over it and it kills me..there’s so many things I wish I could of done to help her and I would of done anything just to hear her talk. I don’t remember what her voice sounds like anymore and I wish I did. There’s so many thoughts and emotions we go through and it is hard to talk about and express. Thank you for writing this.
First of all, my condolences. May your mom rest in eternal peace.
So touching & I can so relate. I too cared for both my mom & dad. My mom passed first & a year later my dad. I still remember everything about both of them. Let me start with my mom. She suffered a good 9-10 months before God called her home. Yes, I was there with her every step of the way. Sleepless nights, every holiday spent at her bed side whether it was at home or at the hospital, I was there. Watching her sleep, watching her battle her pain, her anxities, watching her transform into someone I didn’t know at times because of her dementia, was the hardest thing I had to face but I did it because of the immense love. I had for her. I slowly watched her deteriorate befire m uhh eyes & all I could do was keep her comfortable. A couple of days before her passing, she called me over to her & asked me to go to the store to buy her some of her favorite foods & snacks, which I did, but she never touched any of that. I knew she wouldn’t because she was on a feeding tube & wasn’t taking in any solids. But just to see her smile when I showed her was priceless. My mom passed a day after Easter, her look in her eyes met mine & I knew she was trying to tell me something but couldn’t. To this day, how I wish I could know what she was trying to tell me. With my dad, was watching get depressed knowing his lifetime partner was no longer by his side was devastating to watch. At one point, I & two of my brothers had to stay vigilent at his bedside because he talked about ending his life. Watching him at this phase was so emotional given we were still mourning my moms passing & somehow getting prepared to mourn my dad as well. This happened in a course of 6 months after my mims passing. In & out of Drs offices, admition into hospital stays was just a normal day of life for me. Remember on a Friday morning, my brother called me into my dads room, he held my hand & said to me “it’s time” but in spanish. He looked flushed & very much agitated that I gave order for my brother to call 911 to rush him to the hospital. My dad never returned home. He was almost pronounced dead that Friday when rushed to hospital, Dr advised all family that he wouldn’t make it through the night to get prepared. So immediate family was called & we were all there at his bedside in the ICU when Drs were impressed how good he looked & was responding to all of us. He wasn’t out of the woods but transferred out of the ICU unit into a regular room. Saturday crept up on us & again we watched my dad going through different episodes because he also suffered from early signs of Alzheimer’s. We asked that everyone be waiting in the lobby while his children stay at his bedside. We sang songs to him that he wanted to hear. We shared stories. We cried. We laughed. He told us he loved us. At some points he would start talking to my mom, we let him, but it was hard to see & hear. I left for awhile that evening to return at night. That night, I took my dads hand & asked him if it was ok for me to leave because I was going to church the next day to pray over him, then I was going to visit mom at cemetery given it was going to be Mother’s Day. He squeezed my hand & affirmed with a nod that he gave me permission to leave. Promised him I’d return as soon as I was done. My brother texted me early in the morning to wish me a Happy Mother’s Day & to let me know dads vitals had improved & Dr had given them a positive outlook. He then told me, go sis to church & pray. I’ll see you this afternoon. I felt at peace knowing my dads vitals had improved but still had little doubt. Nonetheless, I & my little family got ready for mass. We arrived & sat down in church. About 20 minutes into the mass, I got a heavy feeling, started feeling like an anxiety attack was to abrupt, I couldn’t help the feeling that my daughters asked me if I was ok. Told them, I don’t know, just have a weird feeling something happened & I need to look at my phone. They pulled my phone out of my purse. When I looked at it, there it was. A message from one of my brothers that my dad had just passed away. He died peacefully in his sleep that morning. What a glorious present for my mom to have him home on Mother’s Day. It hasn’t been the same. My heart still aches for them. Miss them more each day. My consolation is that they are both together & resting in eternal peace.
Hello my name is Debbie, my mom passed away 4 months ago today. I miss her like crazy. We had a great relationship she called me her “perfect daughter”lol. Mom had so many heart issues mostly from smoking for about 30 years, she quit in her late forties after her 1st heart attack. After that she more heart issues come about. She was a very happy person for the most part but I knew she missed how close we use to be, I married my 2nd husband and things just got really busy for me (that’s my reasoning) we talked less and saw each less but she knew how much I loved her and was always the 1st one there when something happened. Her finally month was so up and down, we thought we lost her and then she got better, she went home from rehab for a few days and ended up back in ICU.
I kept telling my brother she wasn’t herself and now after reading your experience that is what was happening, she thought my husband was in the hospital and said “are they taking Mike to surgery” I was like mom Mike isn’t here…she insisted she saw him. She couldn’t feed herself the last couple days so I feed her. She only last 4 days, we got the call in the middle of the night she coded but they brought her back. We knew she would not want to live on machines so as a family we said our goodbyes with heavy hearts. 5 of her 7 grandchildren were with her as she was removed from the machines. She was the strength of our family and I don’t know how we will keep connected. I’m the only girl with 3 living brothers.
Thank you for sharing your story and I’m sorry for your loss.
Mom’s been gone 4years now but it seems like yeasterday. You wrote every that I went tought with her. Sne talked to her parents who had been gone for. Maney years. Tellingthem to wait IM comi ng. And we talked about. maney things late into the night. I will always remember how young her face looked just before she pasted. She was so peaceful And I had seen many people past and had never seen that before.
Loved Your post. My mom died from MSA (multiple system atrophy) a year ago. I am 32 and my youngest kid just turned 2. It was impossible for me to take care of her 24/7 so she had a full time nurse (my dad passed 8 years ago) Ill visted her at least 3 times a week and stayed over as much as I could. For me every time my phone ring from her house made me so nervous and axious, felt like I had to always be near my phone.
Thanx for shearing ..
My mother slipped away on the night I went home to have some rest,after spending countless hours with her in the nursing home I usually slept on a little chair at night and I kick myself for leaving her alone that night.☹️
I sat with my dad the best dad in the world and I had him for over 58 years. His illness only lasted three weeks and he was 85 years old. Up until a month or two before he was happy, eating well and still getting out and doing things. I was not ready for him to go but the last week and a half I knew he would not return. The last thing he said to me was I love you son. Five months later I still miss his voice, his laugh but most of all his wisdom. Yes talk to your parents listen to the stories because once they’re gone you will crave them more than anything in the world. I was blessed to have a great day and I still have my mom at 88 she’s healthy and wise. You have watch the pain in her face of losing her partner and 62 years. Enjoy them but most of all love them the way they have loved you. I love you daddy
I was the one who she wanted all the time. I am one of seven, and no matter what I had to be there. In the final days when we knew the battle was over she said to me ” I don’t want to die alone”. Even writing that my heart hurts so bad. I made a promise that I would not let that happen. And my momma passed away peacefully in her sleep with my hand in hers. I woke up and she was gone. I am thankful that I kept that promise, but I am dealing with a lot of what ifs. I miss her everyday. I will miss her until the day I get to be with her.