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”
Not quite 9 years ago I watched my dad die, from a fast paced brutal prostate cancer. I was just looking at photos this morning of him so happy and alive (in so many ways vs just physical) the day before his diagnosis on July 5th then looked at another picture at his surprise 60th bday party at the end of January, only a short 6 1/2 months later and he looked nothing like the same man. It was less than a month from.thwn that he passed. The last few days he was to be in hospice who was coming on Monday since he came home from hospital the Friday before. Those few days were unimaginable, he would sit perfectly steaight,stopped communicating verbally, would see him stare off in different spots. The only verbal communication was when we asked him if he was tired of fighting and he said YES. We told him it was ok if he was tired and done fighting. He didn’t have to fight anymore for us. We would be ok, so he didn’t have too anymore. The family all came and said there goodbyes that day. My biggest regret is that I couldn’t do it, I couldn’t say goodbye! I just sat there next to him holding his hand, told him I loved him. But why didn’t I say goodbye, I wish I did!!!!! I regret that everyday since then. He died the following morning which was a struggle for him and me too. He did not have a DNR and my mom couldn’t say not to try so I had to do CPR until paramedics came, the noise if that breath into him is unforgettable. He was my everything, the best dad and best friend I could’ve ever had! To have another moment, hear is voice for a second, anything would be amazing.
Can’t believe this popped up on my news feed today. I bury my mother tomorrow. She died a week ago. I did all the things you said, I sat by her bed, watched her tiny chest rise and fall, couldn’t sleep, didn’t leave her for 7 days and nights. Thankfully, I was not the ‘bad’ daughter. I was the one who always enjoyed vacations with her and cared for her in every illness. I wouldn’t have it any other way. I have AMAZING memories with my mother. She was 84, beautiful, independent, Christian, and a very hard worker. I will miss her SO much, but I’m at peace with her passing. My faith in God has assured me that she is abiding now in a new body and has joined the angels choir.
Thanks for sharing your experience – it inspires me to share mine. The older I get (57 YO now), the more I realize how INCREDIBLY blessed I was with Parents as uniquely loving, yet sternly guiding when necessary (and I required this quite a lot…), as mine. My Beloved Father passed at the young age of 51…he and my Sweet Mother (also passed away…2013) had all three of us (older Brother, younger Sister) young, so I was 33 YO when he passed. I was the only Family member in the hospital room with him when he died…this is NOT indicative of how attentive and involved ALL of us were, it was simply “my turn” to be there overnight. I had, quite honestly, prayed, and prayed very hard, to be allowed to be there when he passed. There was no other place on the face of this earth I would have rather been…I was able to make sure the hospital staff adhered to his wishes (living Will), give him reassurances about his Beloved Wife (and my Sweet Mother) whom he was leaving behind, and tell him THANK YOU, one last time, for being my real-life SUPERHERO. I consider myself fortunate beyond belief to have been allowed to do this…not many get that chance.
Thank you for sharing your story. I lost my dad 2 1/2 years ago. This brought back so many memories. Although he was in a nursing home I spent the last 4 days of his life sitting by his side, sleeping in a chair along with the hospice nurse. He was non communicative but i knew he could hear me. In a way it was easy for me to accept his passing because i was able to make peace with myself over the guilt of having had to put him in a nursing home because i lived in a different state. In the end I knew he could hear me talking to him as he transitioned over because he would squeeze my hand in response. So again I say thank you for sharing your story.
I lost my mom in 2004 and my dad in 2008. It was difficult to see them in such fragile states. I am the youngest of 7. In February, my oldest brother passed away in pretty much the same way our mom did. Seeing him go through everything she did, just brought back all of the emotions I felt back then. Nothing prepares you for death. Cherish the time you have with your loved ones. Once they pass, they will forever live in your heart. Remember the good times, laugh, cry, talk about them, talk to them. It does not get easier over time…it just becomes a part of your every day life.
The last thing that i could do to help my mother was leave her bedside. I was not a bad daughter but she blamed me for the cancer, for being in the nursing home, if Dad left to sleep, indeed it was my fault but you cannot hold twisted thinking against a loved one. She had seen Indians outside her bedroom door at home. So when my Dad and my two sisters were with me and she was dying, I realized how stiff she held herself if I touched. The last words to me were ‘Gt away from me, you bitch.’ Realizing that she was refusing to die as long as I was there. I made an excuse in a clear voice and left. She allowed herself to go before I was out of the building. It was the last thing that Icould do for her.
December 14 this year will be a year since the day I woke up on her couch next to her hospice bed in her living room where she wanted to be when she passed. She was in the last stage of COPD. She had woke us all up one last time to tell us that she loved all of us. After that she said for us to go back to bed. Well come time to get her up for her breakfast I looked over and I had never seen anyone look so peaceful as she did at that moment. I tried to wake her but her eyes would not open. At that moment I knew she had found her peace and blessings.
Very moving. My Mom passed away a couple months ago. I didn’t think I would be able to go on without her. I also was there to see the final stages of my Moms life. I learned things about her that I never knew. Like her Hebrew name. I had to write it down so I wouldn’t forget. My one regret is that I didn’t get to save a message she would leave on my voice mail. We spoke everyday at least 2 times.
My Mom was an amazing strong lady who taught me I could go on in strength and her wisdom. She always had the right answers for all my problem .
I still talk to her and listen for a response.
I am proud to say though this was by far the most painful feeling I ever experienced, I am standing strong because my Mom taught me how. ♥️
I have watched both my parents die and it’s the most painful thing I’ve done. My Dad we watched him struggle for about 6 years with strokes and congestive heart failure and not always knowing who we were. My Mom stayed with us for 4 years after Dad passed but they were not good ones for her. She had Alzheimer’s and breast cancer. When we decided it was best for her we sent her to hospices my brothers put me through hell because I and my family would not let her die alone. They told me that I was the reason she would not let go and I know I didn’t have that power but they came to see her 1 time before she passed and that was 9 days before and continued to harass me so much that I blocked them. She was asking for them and I finally told her they were on the way. She lasted 1 hour after that. I miss them both so much and to this day I will never understand how they could be so cruel and uncaring because they were all there when my Dad passed and no it’s not because he was to hard for them because they never really helped out with either off them. One did help with my Mom but now after the facts of her life with him have become more clear I have guilt that I let him take her with him even though I went to get her often to stay with us. Just always remember to love them.
Thank you for sharing your experiences and supportive words.
I lost my Dad June 15, 2019.
It goes so fast. I felt like we were all going thru the motions to make sure my Dad was comfortable.
I didn’t want to believe it was happening. Our time together was getting shorter. It just wasn’t fair.
So many questions and emotions.
My Dad was a fighter. But it is a comfort knowing he is no longer in pain.
It’s hard to see my mom in pain of losing her best friend, her life partner and tbe love of her life.
It is just not the same here without him.
We all grieve didferently and separately and together.
We learn to be supportive and yet give each other space.
You don’t want to leave the other parent alone knowing they are hurting.
I am so thankful for the life he gave me and blessed he was my Dad.
You can never be prepared.
Just be there when they need you!
❤️