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”
Thank you for sharing your story. I read this though tear filled eyes as I and my sisters are going through this with our mother. She is currently under hospice care at my sisters home 3 1/2 hrs from me. I go up there every chance I get to spend time with her. Â
Here is my story.
(Side note: I wrote this September 14 2016, I have not changed the dates or my age)
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I had a Mom, once.
My name is Janice. I am 42 years old. I had a mom once. She passed away five years ago on September 14, 2011.
I didn’t have the best relationship with my mom. Don’t get me wrong, we got along and we talked but she annoyed me… a lot. She bitched at me, nagged me. Some days I thought she hated me. Some days I thought I hated her and that I’d be fine without her.
About three years before she died, My mom was diagnosed with pulmonary fibrosis. Pulmonary fibrosis is a lung disease, that without a lung transplant is terminal. The average life expectancy after diagnosis is about 2 to 5 years.
After finding out her diagnosis, I did some research online, and I went on some support groups and I educated myself on this disease. I knew that my mom was probably going to die. It did upset me to think about it, but I guess I thought that was life and just what happened. Besides, I’d lost some great people in my life that I got along with better than my mom so I figured that when the time comes it comes, no big deal.
My mom was OK for a while. Then she started to need oxygen and her health was declining. I’d visit with her and have tea. Most nights I’d send her a plate of whatever we were having for supper, usually delivered to her apartment by my son Brandon. She seemed to enjoy that – except for the “Alpo” dog food she accused me of sending one night, that was actually Puritan stew from a can.
As her health declined more and more, she required assistance with almost everything. She had some PSWs and a nurse helping her. My brother James started staying with her. She was declining fast and I knew it but in most ways I think I was oblivious to just how fast death was approaching and what it would actually mean.
On August 25, 2011 I was irritated with my mom. She wanted to go to coffee time in our apartment building but needed help to get ready and into her electric wheelchair. I went to help her and when I got there she had to go to the bathroom. Well, when you can’t breathe, just moving from a chair to wheelchair can take everything you have, then you need to wait 5 minutes to 30 minutes or longer until you can get your oxygen level back up to do your next task. So mom got to the bathroom and I did not want to wait for her because I knew it was going to be forever before she was ready. She wanted me to wait but I didn’t want to. I told her I’d come back when she was ready. I was irritated with her so I probably wasn’t as nice as I should have been.
In the meantime her nurse came to see her. The nurse saw her condition and ended up calling 911. My mom was admitted to the hospital. Mom wanted to go home but I felt that she needed more care than we could offer her. I felt she needed around the clock care from a health professional. I am not a nurse or doctor and I had no idea that she was in such bad condition that she needed to go to the hospital. What if this happened again?
Then the doctor told us that she had weeks to live, not months. We then tried to get her into Hospice Niagara. But that did not happen. Mom was moved to shaver hospital for palliative care.
I visited my mom every day. She had some good days and some bad days. Some days I stayed longer than others. Some days I visited a few times. On September 12 she had a good day. My cousin and his girlfriend visited her, I brought my kids up to see her like she asked and we had a nice visit.
Then when I went to see her on September 13 she was having a bad day. I sat with her for a bit talking to her but she kept falling asleep. Her pulse seemed to be very high. I told her I’d let her sleep and come back the next day.
I think it was about 5:30 AM on September 14, 2011 when I got a phone call from the hospital saying very gently that my mom was gone, and that we could go see her if we wanted to. Some time between 2 AM – 5 AM that morning she passed away in her sleep. As much as I was expecting this day was coming, I was shocked.
When we went to see my mom, she didn’t have her oxygen mask on anymore and she looked so peaceful. Somehow there was a single tear on her cheek.
She was gone. I let her slip away without knowing myself or being able to tell her how much she meant to me. I didn’t get it then but I get it now.
The reason that I am sharing this is in the hopes that I might reach some son or daughter out there who feels like I did. A son or daughter who has a good mom but hasn’t shown their mom how much they love and appreciate her. Please show your mom how much you love and appreciate her before it is too late.
You see, I had an OK mom. We didn’t have much growing up, but we had what we needed. My mom and my stepdad did the best they could to raise my brothers and I right. That’s what I would’ve said about my mom back then. After she passed away that changed.
I love my mom more than words can express. I miss my mom so much. Much more than I ever thought I could miss anyone. I think about her all the time. Sometimes when I speak I hear her words coming out of my mouth. I have come to realize that she was an awesome mom. I couldn’t have had a better mom. Even though we didn’t have much, she did her best. She loved us so much more than I could understand. She was always there for us. She never let us down, or turned us away. She taught us everything she could. She would do whatever she could to help us. In all of her nagging, she only wanted what was best for us. She never steered us wrong. Mostly though I have finally realized that she was my biggest fan. Sadly I realized this way too late. I just wish she was still here. I wish that she was still here so that I could tell her how much I truly love and appreciate her and all that she ever did for me. But I can’t. It’s too late. If it’s not too late for you, do it now.
It has been 5 years and today has been a very hard day. I worked all day, I cried all day and I wrote this message all day. I wish I could have my mom back.
Mom I love you.
Omgosh, I’ve worked in a nursing home for 41 years and have sat beside many a bed side holding hands with one of my resident friends and watched them take their last breath. So I had a pretty good idea of what to expect. It was quite different when it was my own mother. A year ago this past June, I found myself sitting beside her bed. I have five siblings and four of them were there, as well as many grandchildren and neices and nephews, but I was the one who did the majority of the changing and medications. I slept beside her and held cloths to her mouth to catch the drool. I ate , lived , slept in that room for six days, only leaving to shower or when someone else wanted a quiet moment with her. I would not trade those six days for anything. All of us sitting by her bed, laughing, crying, talking about memories. Even though it was one of the worst things to ever happen to me, it is also one of my greatest memories. Every single day I see something, or say something that reminds me of her. I wish she were still here, but I also know that she is happy, pain free and finally with my father and her own parents. Thanks for the article, for putting a lump in my throat and a tear in my eye!
Having always looked up to your Parents remember how much they loved you…
My mom past August 15th, 2019. I lived out of State, I was going back a fourth for 4 months, a week home a week there. I had just gone back home on a Sunday and I get a call on Thusday morning, that I need to come back that she will be leaving us soon, I made my flight arrangement to leave that day, with in 2 hours they called me again and said she has passed. I didn’t make it back. I keep going over things I should of done. I did tell her I loved her when I last seen her knowing this may be the last time I see her. Her memory also was going though the months, sometimes she knew me other times she didn’t. I still cant believe that she gone, every little thing reminds me of her, and I break down in tears. I believe she is in a better place, but I still feel lost. Was so use of her just being a phone call away.I will miss my visit, our talks and disagreements. What was she thinking days up to her passing. Defafently the worse pain I have felt.
Oh my God I cried the entire time I was reading your story. It was like I was reliving my father’s death all over again. Thank you so much for sharing!
I had the honor of being with both my parents as they passed from this life (separately). They both died peacefully – my father of cancer 6 years ago and my mother of a stroke/hemorrhage 2 years ago. I will never forget the hours I spent watching them die – looking into their eyes – stroking their faces and hair – sensing the peace of what was to come. Death can be beautiful and is certainly a natural part of life. I am not afraid of my own death. I only hope that when I go, someone can enjoy the honor of being with me, whether that person is my husband or my children or maybe the grandchildren I don’t have yet. Thank you for sharing your story as it moved me and reminded me of my own experiences. I treasure those memories.
This popped up in my news feed yesterday which is exactly 32 year since I lost my mother to bone cancer. Thanks you so much because even though it has been so many years this is exactly what I felt during that time. Even now I sometimes wish there was more that I could have done. I was pregnant at the time, and my daughter was born 3 days later.
I am amazed at how many of these stories included incidents of “visions”. When my mother began her journey home, we weren’t even aware she was near the end…I happened to see her doc on her floor in the hospital so I approached him to ask how she was doing. He said she was failing and that we should get the family together…I wonder when he was planning to tell us? The following evening, I was standing next to her bed when she look up at the ceiling and asked “who are all those people?”. I jokingly asked if she recognized anyone. This was my first experience being with someone near their end, so I thought she was hallucinating and didn’t take it seriously. She was gone the next morning. It was a shock because she had been totally lucid and carrying on conversations with all of us the night before, but she was a very private person so maybe we shouldn’t have been surprised.
Three years later, Dad, who had dementia, began his journey. He got shingles, which made him weak and he began falling…he broke his hip and had surgery. He seemed to be recovering well but suddenly stopped swallowing, which is common with dementia, and because of his “advanced directive” he just received palliative care, no interventions. He entered a seeming comatose state and lingered for about a week and at the very end, after a week of absolutely no awareness of his surroundings or the people around him, he opened his eyes and staring straight ahead, smiled the most glorious smile, then closed his eyes, grimaced once, and was gone. I know he saw everyone he loved who had passed before him, including my mother, whom he always said was the “love of his life”.
I didn’t get to be with mom when she passed but I will always cherish those last few moments with dad. These experiences have opened my eyes to the possibility of life after death, and have alleviated my fear of dying. I’ve also been “visited” through a friend who has a unique gift and freely shares it.
I have read this and tears are falling down my face . I stayed with my Dad when he was dying 20 months ago . I felt no one understood how I was feeling and how sad I still feel now . You do think you could have done more my Dad couldn’t speak in the end though he tried too. I hope you knew I was there x