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”
My mom has been gone for almost a year.Â
She fought breast cancer and worked all the way through her chemo as a salad ‘girl'(!) at a local restaurant. Three months later she started tiring more, and then she collapsed. It had metastasized to her brain. Emergency surgery and rehab hospital and radiation. She came home!Â
And got weak again. Back to the hospital for tests and found out she had cancer in her spinal fluid.Â
Hospice. We thought we’d have three months.Â
We had less than a week.Â
We had visitors! I’ve learned, don’t turn anyone away because they will tire your parent out. Your mom and dad need to know that they mattered to those people who want to come.
Her eyes closed a day and a half before she passed, but she could hear us.Â
Her final hours, from 9:00pm to 6:30 am I sat with her, singing hymns and reading scripture.Â
She would have left us sooner, but I had called my brother and dad back, and told her she needed to wait till they got back. Â She struggled to take two great big breaths and kept going for three hours after they arrived.Â
People will say call if you need anything. Do it.Â
Make that call that says I need help cleaning today.
The one that says, can someone pick up the kids from school this afternoon?
The one that says, I’m supposed to lead the Bible study/book club/PTA meeting but I’m not up to it.Â
Let people help. Let them provide meals and goodies.Â
They want to make your grieving process easierÂ
but they are grieving too, either because they knew your loved one, or because they care about you.Â
A friend sent this to me as I’m dealing with losing my father who I’m extremely close to. It’s only a matter of days. I’m scared to death. I lost my mom last year on Mothers day and I’m still grieving her loss. Now I have to re-live this all over again. I’m in so much pain and heart ache. Broken. I have three kids and a husband who need me and I can’t figure out how to continue on for them. I will need to seek help for sure. I’m sorry for everyones losses. And thank you for sharing your stories. It’s so hard to watch your parent die.
I have walked this journey with my parents and a dear friend. It is never easy, but is gratifying. There is no right way nor wrong way to walk this path. I will say that the big plus is that your loved one passed away in their own bed and we could look back and have no guilt. Your story is well written. I will add that hospice did advise us that our loved ones will choose who will be with them when they pass. I wholeheartedly believe this to be true.
I watched my Dad and Mom both suffer an die, in fact we had to decide what day our Mom was to die because of a botched Heart Surgery. I can relive both of their deaths every Little detail even though it has been 24 and 15 years since their passing. I remember my Husband’s death too he was diagnosed with ALS and died January 2018 again I remember everything, it is hard to live with
I was at my mom’s bedside when she died 6 yrs ago and it was very very hard I’m just grateful to God I was there. Again a month ago I was at my father’s bedside when he died. I almost missed it because I fell asleep in a cot they put up for me but I just happened to wake to see when he passed. I am grateful the staff called me and told me to come back after I left for the night. I will never forget their kindness. Yes they say go eat, sleep etc. You don’t.
I read your story and it makes me cry. I lost my mother at the end of last March. It has been the most difficult thing to let her go. She was 98 but was well until one night her blood pressure was not normal and she was sent to the hospital where she caught a virus that attacked her heart. She was hospitalized for about two weeks and she died the last Friday….To this day I still do not believe it. She was an amazing mother and we never left her alone on these two weeks. We are 6 kids and 5 were in this country. We were all there with her on her last day. It was important for all of us to be together. She had the most beautiful blue eyes and such abundant and beautiful hair. It told her every single day how much I loved her and that she was beautiful.  She was moved in a beautiful old age home two years ago because we thought it was too hard for her to be in her home. For those two years she was never alone, we had a calendar and one of us would be with her every day.  We each took our turn.  I wish, and I guess we all do, that she would still be with us. Miss seeing her smile when I told her I loved her……I understand your pain, we are never prepared for this. It makes us realize that life is short and that we should never  take anyone or anything for granted.  I wish you love xxxx
I lost my dad in June 2012
He was a hardworking devoted Dad.
Lived right and kept the good book in his left hand.
By 74 he kept losing weight and didn’t understand why.
Went to the hospital in November 2011 which we don’t do. Found out he had 4th stage pancreatic, bone, kidney and prostate cancer.
Sent home with hospice June 1st.
Hospice in Mississippi refused liquid pain meds for 8 days. He felt every bit of dying.
Thanking God he was still in his right frame of mind!!!
He was an Airforce veteran.
I was there taking care of him till his last breathe.
My life has NOT been the same since.
X Daddy’s Girl.
I too set by my mothers bedside and watched her breathing.
But my mom had plans of her own. It was a Wednesday
and my sisters and I stood vigilant by her bedside. It was the day I went to have my hair done so my sisters told me to go it would be what mom would want me to do and they were going to the cafeteria for coffee. Mom waited until we were all out of her room and she left with Jesus. I always felt guilty because I wasn’t there but it was what she wanted for none of us to see her go. I did tell her I loved her before I left and that I would be back soon. She did it her way just like she always did.
When my mother at 91 said to me “I have no friends left, they are gone” , I knew her time was almost up. I lay with her as she was passing. I heard her heart stop. I am so glad I was with her. I can only wish that my children are beside me, with me, when my time comes.
I totally relate to your story. My mother passed almost a month ago and it was exhausting trying to protect her from family who I know she would not want to see her so close to death. She was very proud and had a high standard for herself and the others around her. I also have a different experience than my sister. She has all these wonderful peaceful memories and I don’t. Very complicated.Â
Thank you for sharing your story.