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 Mother passed away 14 years ago this Thursday on Halloween morning. She had been sick for a couple of months but did not go to the Dr. until she had no choice the pain was so severe. She was immediately diagnosed with liver and colon cancer. The Dr. told us we had a couple of months but she needed hospice or nursing home care for comfort control. We moved both her and my Dad to a nursing home a couple of days later on Saturday in a room together as my Dad had been on dialysis already for 4 months and already had nursing care during the day time hours. He had a heart attack and bypass surgery 6 months before and then kidney failure 2 months later. My brother left on Sunday and went back home to Chicago and told her he would be back in 2 weeks, he was always her favorite. The next morning 5 am I got the call she had passed and that my Dad was sleeping and did not know yet. The nurse said they asked my Mom if she wanted anyone called when things were going down hill and she said no. She passed with just the nurse by her side but that is how she wanted it. I went to the home and woke my Dad up and I was the one that told him and all he said was “he wished it was him”. Nine days later he was taken from the nursing home to the hospital and was admitted. He had given up he lived 2 more days and passed on Veteran’s Day. The last thing he said to me that morning was “Good Daughter “ he then lost consciousness, my brother was scheduled to come back that night my husband contacted him and said try to hop an earlier flight because Dad might pass before then. He did get an earlier flight and was here about an hour before Dad passed. I kept telling my Dad to hang on, Bill was on his way and it was like he did. Once Bill was here he seemed to relax and just let go and went to be with Mom. It was the hardest thing I have ever done and I want to believe that is why I was not there with my Mom When she passed those few days before. I still miss them like it was yesterday and I often hear his last words. Yes I was a Daddy’s girl.
I loved my dad for all my life, i watched out after him for 30 yrs thou the last 6 yrs were health ridden but the rewards are still fulfilling, no regrets
Thank you for this, I lost my dad eleven months ago and it’s such a raw feeling of loss, loneliness, guilt and such sorrow. My dad lived with me for 30+ years, the last 8 years with Dementia and last 8 months under hospice here at home with me being his caregiver all these years and I would do it again. No words were left unsaid.
I just sat with my mom for 6 weeks while she passed from cancer. We were told 6 weeks before she would be gone by the weekend. My sister and I were the only ones in the room when she left this earth. We kept her at home under hospice care. They were great. I still haven’t come to terms she’s actually gone. See.. This is her third time with cancer. Oct 2010 she had rectal cancer. June 2012 she had necrotic faciatis and was given a zero percent chance to live. Oct 2016 she had Birketts lymphoma. Oct 19,2019 she passed of Birketts lymphoma relapse. She couldn’t fight anymore she decided. It was horrible to watch her decline. She saw ghosts. And told them to get off her floor. My sister made her a quilt for her casket. She picked out the colors and Kelli made it. She asked every day if it was done. At 4:21 pm on Oct 18th she put theSf stitch in her quilt. At 3:02 am Oct 19th she took her last breath.
What a beautiful story. I cared for my mom two years watching her die from cancer actually it’s been two years and I miss her everyday and i cry everymorning
I watched my dad die. He had a brain tumour that from the moment of finding out till death was two months. The night he was brought to hospital I was there rubbing his hair holding his hand and talking to him the whole time. I sang to him lol I’m not good but somehow it calmed him. He wasnt awake but his hand was moving in jerking motions up and down and circular movements. When I spoke he stopped this motion. Then he would start again so I would proceed telling him things I thought that would calm him. Just before he took his last breath I leaned over and said daddy you watched three of us that are here take our first breath we are here to be with you when you take your last. I told him that my younger brother was on his way home but I knew he was struggling and I said you can let go now daddy you can let go. My heart broke that morning and I will never get over it. I to looked and stared at him memorizing everything I could and also picking out some features we had the same. My biggest fear was and always will be is did he know how much I loved and worshipped him and how he was my hero. Hugs to all
I watched both my mom and dad die within 7 months of each other. My mom’s death was a surprise. As I look back I see now that she had been sick for some time, but did not want us to know. We all had worried about my dad, who we knew did not have much time left with us. From the time mom got sick and passed away it was only 3 weeks.
Many of the things that happened in the last few days of my moms life with us have for ever been embedded in my memory!
We took turns staying nights with her in the hospital. On the night I stayed with was a rough one. She had a hard time sleeping. Very restless and agitated. About sunup she looked at me and was not a happy camper. She said “I am pissed” . I asked her what had upset her. She replied “ I asked God to take me and he did not”. She was ready to go home. I then told my mom the hardest thing I have ever had to say, “ Then go home mom, if that is what you want. Let go”!
She said that is what she wanted to say good bye to my dad, her husband of 56 years. And to the rest of my family.
Next was the second hardest thing I have had to do, tell my dad. I had to explain to him that the love of his life was ready to say goodbye. I have no ideal how I found the strength to relay this message on to him. Knowing that my mother was only begging the journey to her everlasting life made it possible for me to stay strong. All my dad said was “ I know that she is going to love heaven “.
My mom had always been a very emotional person. She cried at the drop of a hat. During all of her final good byes to us she never cried. She smiled and laughed . She gave each one of us final instructions. What she wanted to wear, who she wanted to do the service and where she wanted to be barried ,how proud she was of each one of us. She had such a light around her the whole time. It was then that I wanted what she had. I wanted that relationship with God. I wanted to be the smiling and laughing. I was jealous of my dying mother. I was not until after my fathers death that I was able to turn my life over to God. I then knew what my mom felt!
My dad had been sick for some time. I had been the one to take him to his Dr appointments, dealt with all his oxygen needs. My life had revolved around him and his needs. My roll had changed. I was the one taking care of the strongest man I ever knew. I had to step up and be the person who was the strong one. He did not always like me telling him what to do. We argued often. He even kicked me out of his house once. But I came back the next day and told him what I thought was best for him and he finally agreed. I had to be STRONG. I had to stand my ground and not give in. This was not easy for me. My dad was my rock, my person I always turned to when I needed someone STRONG.
6 months after mom died dad took a turn for the worse. We knew that he did not have much time left with us. 2 weeks later he passed away.
He had fallen at home , was unconscious and had to be taken to the hospital. This was the last thing he wanted to happen. He was a Cowboy, he did not want to die any place but on the ranch.
When he woke up in the ER he looked and me with tears in his eyes and asked why. Why did I let them bring him here. All he wanted was to see my mom. He was ready to go home.
My dad got to say his goodbyes to all of us kids, grand and great children. He then left us to go spend eternity with the love of his life.
During all of this I some how found my self. I found God. I found the person who I wanted others the look up to. Most importantly I found the strength to go on. My daughter needed her mother.
Not a day goes by that I do not think of them. Some days are harder then others. But I remind my self how blessed I am to of had such amazing, strong and loving parents. And I pray that I can be the same to my daughter.
My mom left a little less than two years ago. So much of this story is so close to how it goes. It was a painful yet beautiful journey. She passed 10 min after listening to her favorite song Amazing Grace which was so important to her since she lived a life of sobriety for 25 years. She was end stage COPD and we had been in and out of the hospital for years what happened why couldn’t they make her well this time. Well it did change everything about my life. I was in a horrible marriage and realized I wasn’t going to live forever and so I didn’t want another day wasted in life with this stress. I felt her death also gave me a strength. I did do therapy and it helped. He asked me one day if she came to me after death and I thought I was never going to stop crying it was such and intimate detail how did he know she came to me a few days after dying and let me know she was okay. The process has changed me, there are pieces missing but understanding my life more now. I have endured a loss that when it first happened I had know idea how I as going to get thru the next day but I did and still do. It is still a struggle but I know she and I felt nothing but love for each other as she left this earth
I was with my Mom in the hospital alone, everyone else had gone to get breakfast in the hospital cafeteria. I had listen to her for months ask me why she was still here that she was so tired of being sick and all I could tell her was that God still had plans for her. On that morning while we were alone I was holding her hand I told her that if she was still ready to go “home” she could, there were so many waiting to greet her and that I would be ok if she went and I kissed and told her that I loved her. With in seconds she took her last breath and left me in that room. The last words I said to my Momma was a lie, because it will be 5 yrs since that day tomorrow (Oct. 28) and I am still not Ok. I miss her terribly and need to talk to her and tell her so many things.
Thank you from the bottom of my heart for writing and sharing this.
My father passed 18 days ago.
It sounds similar to your story, but my mother cared for him and his decline from being independent and placed in the hospice as treatments were no longer working was merciful and swift.
Unfortunately we had an estranged relationship for the past 2-3 years. Not the way I wanted things, but they were as they were. I too appeared to be the disappointment when it came to his 2 children.
I believe this was due to our undeniable likeness, stubbornness and other opinions that no longer matter.
I am grateful And thankful that was able to cancel plans and travel the 11500 miles home to see him and be with him for 2 days before he passed.
I have never felt the fear and immeasurable despair that I felt watching him die. The physical changes were painful and frightening to watch. I was afraid to spend any time away from the hospice in case he passed whilst I wasn’t there. I forgave him and apologised for things that weren’t my doing, things I wanted to feel in the hope he could hear me and hear my love for him. I did not want to leave his body (him) alone in the city after he passed, whilst we organised the transport from the city to our regional home 4.5 hours away. I was afraid he’d be lonely and disoriented or scared in case his spirit was still around his physical body. I didn’t want him to feel abandoned or left behind. I was afraid to leave him.
I am working through the bone weary tiredness at the moment and the irregular moments of sadness and grief.
I did all the things you described in the article. I searched for physical similarities and tried to take mental pictures of him even though he didn’t look like him self any longer. I longed to find physical likeness, some way that he and I shared something that was just ours and I would have with me always and forever.
One of the hardest things was speaking with him on the phone and for the last time, saying I loved him, yet he couldn’t bring him self to acknowledge or reciprocate what I had said.
I would give almost anything to be able to sit with him and work out differences, mend the broken relationship and to hear him tell me that he loved me, and he was proud of me.
So I could tell him again that I loved him, and see his reaction to know that he had heard it and it meant something.
That is what I will carry with me. Yes, my heartbreak will heal over, though I will never heal from that. That scar will always remain regardless of what other people tell me he had or hadn’t said, what he did or didn’t do or what they believe he had felt for me. Not hearing it from him is a wound that only he could ever heal and the only way I could believe it.
I am thankful he is at peace and no longer suffering with cancer. I hope there’s warmth, love and peace wherever he is resting now and I hope he knows I love him.
Thank you for sharing your story.