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”
It’s been one year since my parents passed away 3 weeks apart in the very same room in a care center. I could have written this. Mom’s friends tell me that she was proud of me. I never heard that from her. I was lucky to have them both for 58 years. I’m blessed with sisters, cousins, nieces & nephews. We’ve carried on together.
I wasn’t the best daughter in more ways than I want to remember but as mom’s life got harder my love for her flowed easily. I layed in the bed with her and cradled her like she did me when I was a baby and then I sat in a chair and held her hand until she squeezed mine and it felt like her spirit was free. She passed in April 2012 and I miss her every day and cry because she’s not here wih us. Sometimes I get to dream about her and that’s a treasured gift from God.
I stayed by my mams side through cancer..as u said in yr post I didn’t sleep for 6 days scared she will need me scared she passed and I wasn’t there. I couldn’t leave her side, I held her hand as much as I could held her when she was scared told her I loved her so much as much as possible. She came to a point she was begging us to help her she was in so much pain even with all the meds from the driver she would still cry out in pain and being afraid yet we couldn’t do nothing to help her other than call out the emergency team and that wait seemed to us like hours. When u see a parent like that yr willing it on in 1 breath then just wanting it all to be a bad dream the next. The doctors came and upped her meds and asked us to say our final goodbyes and as we were doing this I felt a breath then a whisper say “this isn’t going to be enough” I jumped back and looked around me there was no one there only my sister sitting the opposite side of me in the room then Just before she passed the door slammed open and we heard footsteps then she took her final breaths I believe that was dad coming for her and I get great comfort experiencing this and hearing n seeing it for myself that she isn’t alone and they are together again. You never forget their face the looks of horror the tears they cry the cries for help and you constantly wonder if you done enough if u done them proud would someone else have done things better specially with her being at home. I just hope that when my time comes it’s not as bad of an experience for mine to go through and I hope I can do something to make my passing a lot easier on them. Thank you for your story I can relate to everything you said and send love and best wishes to you and your family.
I actually lost my Mother in law who I was extremely close to and a year later lost my Mom. I was with both of them as they passed and relate with alot of what you posted. We discussed this journey before they came to this place in their life, so I knew both of their wishes. I did my very best to follow each and every one of them. My Mither in law had been sick for quite some time so we kinda built up to that day. My Mom passed away very unexpectedly and it was tons worse. I took her to the hospital, her knowing her name, where she was, and awake to watch her slip away for the next 3 days and then pass away as I watched her take her last breath. When she became confused on day 2 she was looking up and had the most beautiful smile on her face. I said “what are you smiling at Mom,” she said thats my Mother, Im going to see her, I havent seen her in a very long time. I knew at that moment my Mom was going to pass soon, she was not going to get better. I was happy for her but so sad for myself and my family. For the next 24 hours we told her it was ok to go and everything would be fine, that we would be fine. She passed peacefully and at this time I literally list my mind for a minute. It was final she was gone. I told both my Mother in law and my Mom thank you for everything, thank you for making me the person I am today, for teaching me. I remember saying “They taught me how to live, now they are showing me how to die.” I never wanted them to feel scared, that was my biggest fear and in my heart I beleive that neither of them were.
I unfortunately didn’t have that same experience as you did but last year I was a junior in high school and I had been missing a lot of school due to the fact that my dad was always in an out of the hospital. One day my brother called me at school to tell me that after school him and his girlfriend were going to pick me up. We all went to the hospital and that day I watched the nurse take out the tubes that were keeping him alive out and it took my dad twn minutes to fully die. That day changed my entire life I experienced so many emotions that I never thought any human being could ever feel. I was depressed,angry, and heartbroken that my dad would no longer be there when I needed him. At his funeral I cried so much more than I’ve ever cried before in my entire life even on the day he died because his funeral made it more real some how. It’s been over a year and I’ll never forget the last picture, birthday party, family function every last that we didn’t know would be the last time we did any of those things without him.
I lost my Mother and Best friend August 7th 2018. Watching her fade away right in front of me was the hardest thing in my entire life. That process was hard but yet so beautiful. I relate with your words all too well. Not everyone can say they were there when their parents passed and I am thankful for being there for both of mine.
I helped my mum look after my dad when we were given the devastating news that he had a brain tumour and they were unable to remove it all. He declined the treatment to help prolong the short time he had been given. I remember the day he said he had cancer he was so matter of fact about it as though he had broken something instead of this horrible disease eating away inside his head. I cried I screamed o couldn’t believe how apt God had been to give the man who knew everything such a cruel way to die. We didn’t need computers or Google when dad was around. He was my hero and it was devastating to watch his mind just shut down to look at him he was still my dad which I think hurt more than anything. It’s coming up to his 2nd anniversary and the tears still fall. A girl will have many prince’s in her life but only ever one King. I miss my dad soo much
My dad died this past August. One of the hardest things I’ve ever had to watch. He was my everything. I realized over the years he showed love by acts of service. And I came to appreciate it. When the Pastor came at his last days, he asked dad, “what was your purpose in life?” My dad didn’t have an answer. My sister chimed in and said, “I think it was being a dad.” You see, he fathered 4 of his children from a previous marriage. Then helped raise my brother and I when we were toddlers. He helped raise my 3 kids, one of them who lost her father by murder. And stood in for my grandkids when my daughter and her ex husband went through a hard divorce. And to think, he was the only child. My family asked me to say something for his memorial. So I wrote a poem.
A Father’s Purpose
Have you ever asked yourself, “What is my purpose on this earth?”
Some of us don’t know, because we can’t see our worth.
Was it a wish fulfilled by planting the trees on that hill?
Or to show your children how to use a drill?
Maybe it was the time caring for your bonsai trees
Demonstrating patience so your family can see.
Could your purpose be knowing how to fix a car?
So your family is safe driving afar.
Remember that big decision that made them scared?
You were right there holding their hand so they were prepared.
What was your purpose, God’s mission?
Maybe it was as simple as being a loving Father, with no conditions.
1 Peter 4:10 “Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms.”
I never got to be with my dad as his death was just a few hours in the making. We live hundreds of miles apart so the call came after his sudden death. My mother is still living and am thankful. However, I watched the days and hours approach as death took my in-laws. Knowing they were going to Heaven made it bearable but none the less sad. The few weeks leading up to my father n’law s death were a special time for him and I. We had times of his sharing his visions of Heaven and His love for me! It’s a time I will never regret as we moved him into our home so we could take care of him more easily. My mother n’law’s death was more of a trying time watching her struggle till the end. She had Alzheimer’s so we couldn’t talk with her but we did talk, sing and pray with her. It was an honor to care for them both and Blessing to know we will see them and my dad in Heaven one day. Till then I’ll enjoy the mother I have left. Thank you fir your story.
I just lost my mother September 30th. She had an aortic valve replacement and 4 days later had a stroke. We spent 8 months in and out of hospitals and nursing homes. We were able to bring her home on and off for these months. She went up and down with her health sometimes being delirious and sometimes combative. I stayed with her at nights (mostly sleepless) and went to work the next day. We were fortunate my brother was retired so he had the days that I worked. The last 3 days of her life I didn’t leave her side. That Monday night I had a recliner pulled next to her. I stroked her arm and told her it was okay to go. Even though I didn’t want her to but I knew she was tired. She took her last breath and grabbed my hand. I wouldn’t trade that time I had with her for anything in this world