Caring for a Dying Parent In Their Last Days – a Personal Story

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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 - a Personal Story

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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737 comments on “Caring for a Dying Parent In Their Last Days – a Personal Story”

  1. Thank you for sharing your perspective. My mom died in May of 2019 from complications from a stroke she had 9 years earlier.  I spent the last 3.5 years of her life taking care of her.  I learned so much about her and myself…all positive.  My sister died a year and half later of a Drug overdose.  At times I still can’t comprehend it.  At the time of this writing I am watching over my Father who is in the final stages of Alzhiemers.  It is a tough road…yet it is so rewarding to be here for him as he eventually prepares to enter his next life.  The one thing I have learned from all this and i know it sounds cliche….Life is short, enjoy it as much as you can.  We all have expiration dates.  God Bless.  

  2. I lost my dad while I was working overseas. The difficulty losing a parent is when you have always pictured them in your life , but they suddenly go. I remember my dad saying to me “ Roxanne I am not sure what is happening to me but I love you”. He suffered so much in hospital that I struggled to endure seeing him like that all the time. When he left, I couldn’t believe it. I thought he would make it but he didn’t. It took me months to work through my pain . I went for grief counseling and I did activities that helped me find my own meaning. In that process, I met my amazing husband who is exactly how loving my dad was. I’m still moving forward even though I miss him everyday.

  3. My Mom lived with me for 15 years with the last 8-10 years her health started failing.  It so hurt to see my strong willed Mom slowly becoming frail but still fighting.  She was falling more, osteoarthritis was gnawing at her body, and by God’s Mercy she never broke a bone.  She didn’t want to see doctors anymore, however, loved her PCP.  He walked us through this path of life coming to an end and sent Home Health Nurses and even his own Office Nurse on those last days.  My promise to Mom when she asked, was to keep her home with me and no nursing homes.  I was still working 40 plus hours a week and I was exhausted.  My husband was retired so he would slept in his recliner to hear if she needed anything and so I could sleep at night and there were many times he woke me to be with Mom.  When she would fall I would sit on the floor with her both of us crying.  Eventually I could work from home and I could spend more time with her.  During a small period she did have to go to the hospital as her heart went into A-Fib.  She became belligerent towards me and I would step out of her room angry but yet crying.  The Doctor saw me and came to me and told me these words: “Parents don’t want their children to see them so vulnerable and ill.  She doesn’t want to put you this through and to see what she is going through now”.  He then told me to say “good night and go home and try to get some sleep”.  Next morning she was being released the Doctor came back and talked with me about Hospice.  Long story short when we came home Mom said “tell me the truth, I am dying now right”?  I held back the sobs and tears and answered her “yes we are coming to the end”.  She sat in her chair and asked me “was I a good Mother”?  I took her hand and looked at her and told her “Mom you are and you made me the woman I am today; you gave me everything I needed to become a self-sufficient, strong woman and thank you”.  She thanked me for keeping her at home. We had a few good days together (but I wanted more) and then Hospice came in and God Bless them.  They gave me and my Mom what we needed to ease the transition from life to death.  She told the Nurse “I’m really tired and want to lay down” and she did and closed her eyes.  I sat in the chair beside her bed and I laid beside her in the bed talking to her and I gave her the shots she needed.  You see in those last few years I didn’t think she loved me anymore.  At one point laying beside her I asked if she loved me and slowly she put her arm on mine and I knew she loved me and had never stopped.  Everything, when she took her last breath, is a blur. I am told my daughter took me to Mom’s Doctor and sat with me as I couldn’t stop crying, sobbing and my mind was dark.  The Nurse and Behavioral Health Counselor sat calming me but I have never ever felt such black loneliness within me the night she passed.  I do remember the kind man who came to take my Mom from me and watching him leave the driveway and sobbing wanting to go with her.  It’s been 5 years now and I have gone through counseling; you see I wanted to have “do overs” with my Mom I wanted long, long talks with her, do more for her.  I now understand alot of things she went through in her life and the physical pain she fought so valiantly.  I wish I didn’t have had to work, I wish, I wish, I wish.
     

  4. My mum died just before our last lockdown. She went to hospital and refused to let anyone notify me and she did not have me on her file as I was always too nosy (her words). She died 2 days later on the day we entered lockdown. I didn’t know. Her neighbour knew a friend in Australia so rang her. He knew of me, but not my married name. Her friend did too, but chose to not contact me. She had my mum cremated and sent to her family up north to be scattered on their urepa. By this time I had found out, did a proper death notice, tried to get her ashes back, she was meant to be buried in our family plot and tried to fix the death notice. I visisted my mother once every 2 weeks, we had a difficult relationship, her mother raised me. Like you I wish I was a better daughter.

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