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”
What a beautiful story and well told! I lost my mom 11 years ago September 2nd. She had a brief illness and multiple surgeries that she just was unable to heal from and so many infections, she ultimately decided on her own that she had just had enough and wanted to be made comfortable until she went. I struggle with that, I wanted so badly to ask her how she decided that what was she thinking after she made the decision and was she scared but all of those things I also felt I couldn’t ask her. My moms twin sister insisted that she get saved and baptized before she was no longer able to speak and comprehend things so the Hospitol preacher came and did all of it from her bed my mom was never into too much religion and all of that and I can still see her in my mind rolling her eyes just about everyone the pastor asked her something and when her put the holy water on her to baptism her. But the love she had for her twin my aunt was why she did it, it made her feel comfort knowing that because she was saved and baptized she would be welcomed into heaven. My mother never had religion or believed so much in heaven and so often I heard her say things like I’m going to hell so I might as well…. but shortly after the pastors visit she slipped into a coma and was given high doses of pain drugs to make her comfortable. We had her transferred to a closer hospital on hospice and my sister and I stayed with her day and night if one of us would leave the other was there.my moms twin would come every morning and leave late at night the three of us would sit around her and tell our favorite stories that concerned my mom as she slept making her way to where she was going we hoped she could hear us and know we were always there. She hung on for three days after we brought her back “home” but my sister and I felt she was hanging on for our benefit like she didn’t want us there when she finally took her last breath. The third and final day just so happened to end up being the first day of school for our kiddos so as my moms twin arrived that morning bright and early my sister and I gave her a kiss and whispered in her ear, which I found out later ended up being very similar to each other we both said we loved her and that we were leaving but we would be back in a few hours that her sister was here with her and she wouldn’t be alone but also that as much as it hurts to say goodbye to her that if it was finally time for her to take her last breath and complete her journey that we didn’t expect for her to wait our return. 35 minutes after my sister and I left the hospital as I was pulling into my driveway my cell phone rang and it was my sister who told me that our aunt had just called her and told her that mom had passed away shortly after we left the hospital! We whole heartedly believe that she waited for us to leave and for it to be just her and her twin. We returned to the hospital as soon as we could after sending the kids off and said our last goodbyes and held her now cold hands and kissed her forehead one last time. Grieving was so hard and as the years have passed it’s gotten easier and less on the surface but I still grieve losing her if I see something that reminds me of her or something she might of done or said my heart breaks and I cry. She’s missed so many things my kids were all little when she passed that they don’t really remember her but I show them pictures and tell them stories but it’s not the same! I still wish she was still here every single day!
I enjoyed this so much. I was alone in caring for my mom when I was 24. I was not good at it. I was scared. I didn’t know what to do. I felt guilty as I got older, because I was so unprepared, but there was nothing I could do. Thankfully I got older and wiser. When my dad lived with me for 14 years, I did better. He kept apologizing for being a burden and I reassured him that we were both lucky to have the time together. But he was tired of living and I felt bad for him. When he died, the feeling that he was simply gone as his body remained, was so simple. You know the moment it happens. I wonder how I can make it easier on my kids and grandkids. The scariest thing for me is wondering if I will remain kind. I want to stay me.
Had to stop reading…I will finish later and let you know.
Flashbacks!
I have taken care of my dying dad who succumbed to pneumonia… I was working at night shift and I will go straight to the hospital to check on him and he was so caring always saying that I should rest first and eat breakfast… But that was my mistake then I heed his advice and then he suddenly went coma!
22 years after my mother followed him.
But it took her ten years suffering from dementia… Until again same.pneumonia claimed my mother…
Still both gave me hardest part of moving on speciallybtaht of my mum whom I thought could go home with me healthy since she had show improvement for 10days of her confinement… But then just the last 3 days in the hospital made me decide to bring her home since she wanted too…
I missed both my parents…
My mom passed april 30th 2018 …she was my mom my best friend …I took care of my mother for 10 yrs ..she had a stroke do lost all control on left side left her in wheel chair ..so I did all for her ..she did not want to go to a nursing home ..and I didnt want her in one either …took her the bathroom bathed her ..dressed her …I also worked full time …so would get her up in the morning ..and I worked close to home so I would go home on my breaks …make her something to eat and give meds ….and in 2016 she had a major heart attack ..she pulled through ..doctors were all surprised ..I took my mom home again …she now needed 24 hour care …so staying home with her for a few months we hired someone to stay with her well i worked but i still came home on breaks and did my things for her …in 2018 she had lung cancer gave her 3 months to a year …she was short one of 3 months …for 2weeks I was by her side I didnt really sleep for those 2 weeks …but I struggle was a good daughter …we had are days in the pass where we didnt like each for a few hours or a day …I feel I could of done more or did I do the best I could….I just miss my mom so much ……
We watched my Mother die over a six week period. There really is no way to put it into words. It was 10 years ago and I still feel it. Death is scary, debilitating,and crushing to the loved ones. It steals the dignity of the dying. My Mother was a graceful southern woman and she did the best she could. But she couldn’t say goodbye so she just shut down for the six weeks it took for her body to shut down. My heart goes out to anyone that has to watch their parent suffer. My father suffered in silence for the eight years after her death. He took his life 2 years ago. The devastation he left behind is unbearable.
I was with my mother as much as humanly possible during her last 18 months here on earth. Her health, both physically and mentally, had gotten to the point where we (me, [oldest] sister, brother [youngest]) could no longer take of her at home. Plus each of us still needed our jobs. Unfortunately, we, therefore, had to admit her to a nursing home. It was one of the hardest decisions I was ever a party in making. Once that became done deal, I spent at least part, if not all, of nearly weekend at the nursing home and whrnever possible, one evening a week with her. At that point, I worked an hour away and live 90 minutes away. I worked 45 to 50 hrs most weeks before going to the nursing home for the weekend. Fortunately my sister lived only 10 miles away so I could stay nights at her home and days/evenings at the nursing home. As long as Mom was able, we would take some type of outing on Saturday and/or Sunday. I’d take her to church when she was able to go. I’d get her some type of outside food for meals. She didn’t care for the home’s meals. Sometimes I would cook begore going and take dishes with me. However, Taco Bell was a favorite–soft taco, no tomatoes, add sour cream. As her health deteriorated, we didn’t talk all the time, but she enjoyed having me sit by the bed next to her. Her entire life she had been a friend to scores of people, many of whom visited. That got harder the last few months because she couldn’t always remember names or from where she knew them. We had an agreement–I’d say something like “Mom, look who visiting you, (xxxxx) from (xxxxx).” Usually that was enough. If not, I’d continue on with the conversation till her light went on. We would also talk about she was child, when I was a child, when I was in college and she’d fix Saurday lunch for up to a dozen of my friends. She became Mom Mert to several dozen students who went to school with me. She loved those times and could talk about them as if they had happened last week not more than 35 years ago. The last 10 days of her life she was in the hospital, DNR. I prayed the hardest prayer I’d ever prayed, “God, if she can’t be the person she wants to be, please take her home where she will be the saint in the mansion you have waiting for her.” During those ten days she was able to tell everyone in the family individually that she loved us. That was so important to her and to us. She passed fairly peacefully in her sleep as I was sitting by her reading the Bible outloud to her. Many lessons remain with me that she taught and lived each day of her life. There is one I think of more than any other. One day a particular hard to get along with person had a “confrontation” with Mom. Believe me, Mom was no saint here on earth, but she had special gift of not holding grudges, getting angry with or simply ignoring people that were complete idiots! I asked her on this particular day how she did it–how could she just not smack the idiots into next week. Her reply that I will never forget, “I can’t do it on my own. I do want to smack them into next week. However, I remember that God probably wants to smack me into next week many times a day–but He doesn’t. He just loves me. And that’s all I have to do, just love them like Jesus loves me. That’s all you have to do too, Xxxxx, just love them.” Mom has been gone 19 months and I miss her as much today as I did the day after she died, maybe more. But anytime someone gets to me, anytime I want to smsck sometime into next week, I remember, “All you have to do, Xxxxx, is just love them, just love them.”
As I read your story, I felt that I had written it. My story was exactly the same. My mom passed 2 years ago and everything you wrote resonated. Thank you.
My mom passed 11 years ago. On 4th of July she wasn’t feeling well. I took her to the ER. She was admitted. The next morning the Dr came to tell us she had cancer and it was all over. There was nothing that could be done. He didn’t say it in front of my mom. I let the dr know I wanted to tell her. When all my brothers got to the hospital I let my mom know that she had cancer. But I still asked mom if she wanted to do the surgery, chemotherapy or any type of treatment. She looked me in the eyes and said “no, I’m tired and ready to go to my heavenly home” she also said ” I don’t want to die in the hospital please take me home”. We got her home the next morning. As she was in and out she told me ” please don’t have any regrets you did everything for your dad and I. Take care of your dad ” As I sat with her holding her hand I watched as she took her last breath. I just thought she saw as I took my first breath and I saw her take her last.
Thank you so much for posting this. My dad passed in 3/2013 and my mom in 4/2016. My mom lived with me the last few years of her life. She passed away in my arms. Reading your article left me in tears and my heart aching. It was like a step by step memory of what I lived through when my mom and dad passed. But especially my mom because she was here with me. Thank you again for sharing.