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 dad passed away in May 2000 and mom in June 2002. They both died at home in their own beds. They both had the company of their 5 children, their spouses and their grandchildren revolving around with them and my mom had her sister there with us as well. Both times were very peaceful. Dad fought non-hodgkins lymphoma and lost that battle after only 12 weeks. He was in treatment and we were all taking turns at our parents home juggling our jobs at same time. He was in pain and would not acknowledge that to us, my sister (2nd born) asked him if he would like a little breakfast, he nodded and said sure, an egg. She went to get him and mom’s eggs prepared and came back in a few minutes to inquiry what toast he preferred, he was gone. Mom, had emphasema and COPD and was diagnosed with an inoperable bowl obstruction. She wanted to be home, and we brought her home. We were literally all there with her every day for 5 1/2 days. At 6:30 pm on that Friday, she whispered “what time is it?” We told her and she sighed very heavily. We asked what she wanted why did she want to know the time, did she want to watch “Wheel” on TV? (She did every day). She shook her head no and said “I’ve got to make it midnight”, why we asked, “I don’t want you to have to send my social security check back to the government.” Her oxygen saturation was at 70 and she was lucid enough to know what the date was and what that meant. She took her last breath at 11:45 pm. I was at her side on the floor, sisters were on bed next to her, her sister was on chair next to me, our brothers, spouses and grandchildren were all sleeping in various rooms around the house. Only sister #2 and I were awake. we held each others hands and moms and waited for midnight. Then I called 911.
I watched both my mom AND my dad pass. Â Daddy was hard. Mainly because of mom. She loved him so. I still have video of him reaching up as if touching something. I was the one who told mom he was gone while holding his hand. Mom was in shock. It was something she did not want to hear. Â
Mom was harder. I have guilt because I couldn’t stay. I am terrified that I let her down in her last moment. It is something I can’t seem to let go of.  My heart hurts.Â
I just went through losing my husband of 65 years. My 4 children were with me to the end (2wks) and we went through a lot of what you described. Â My husband was so happy that all his children were here with him. Â He too also saw and talked to people that we could not see, he kept saying he wanted to go home. Â Along with my children we felt a lot of pain watching him die but I would not have been anywhere else. Â Thank you for your personal story.
Oh wow amazing to read. Last year I lost my mum and dad.Mum had Parkinson’s and dad died of a broken heart. In between all this I lost my father in law. You could definitely say it was a very hard and trying year.
To watch a parent die is hard but 2 parents. 12 mths on still coming to terms with the fact that both parents have now passed away. NO REGRETS. I was there everyday watching them slowly deteriorate but knowing there was nothing that I could do. To be with them, to talk with them was comfort for me. To know they weren’t alone gave me great comfort in being there. I’m saddened for my loss, but happy that they have both found each other once again.
I took care of my mother while she was dying . I too felt I was never good enough . I still feel that way . I went to see John Edward a couple of times hooding he would connect with my mother just so I could hear her say I’m proud of you your doing a good job as a mom , he never did and I still have never heard those words that I long to hear. I want with her when she crossed over . My then husband stayed with her because I could no longer sit in a room and wait for her to die. I said my goodbyes the night before and told her it was ok . She passed the next day as my husband (now ex) said I held her hand but your dad held it tighter ( he had
Passed 4mo the earlier ) Â that was 21 years ago and the pain never goes away . I still long to call my mom long to hear her say I love you one more timeÂ
The last words my mom said after my husband brought me food and was leaving “thank you Ray” what was strange about that you may ask. They were like oil and water. I came home from work often with my mom crying because of something he did or didnot do. The lat day mom and i held hands continuously. The only way i knrw she was gone was that i looked down and her chest wasn’t moving. Thete was mo difference in how she held my hand
Thank you for sharing this. Â I lost my mother a month ago. Â My daughter also passed in my arms 7 years ago after a 5 month battle with leukemia. Â Both deaths as so very different but the pain is the same. Â What is helped me with my daughter is trying to make a difference through her memory. Â I hope I can do the same with my mom. Â Warm wishes to those who have lost. Â Â
My dad and I had an up and down relationship and we didn’t speak for 4-5 years until I found out he was sick. He was in Florida and I was in Illinois, my brother and I took a trip down and talked about him coming to live with us and eventually a few months later he did. He seemed ok for the first few months and then he slowly started stumbling when he walked and then could barely walk and move around was always dropping things. Went to the Dr and the cancer spread to the brain so we started radiation and one day as we were getting him in the car he fell to the ground and we went to the emergency room, the cancer had spread to his spine and spinal nerves and the doctors said there was nothing they could do so we got the house set up like a hospital to do hospice at home. He came home to us on his birthday and couldn’t do anything on his own, we had to feed him and change his diapers, he couldn’t even smoke a cigarette on his own . His appetite became non existent and he would pretend to eat but really feed his cat or the dog. Two days before he passed he made me go buy him a new TV and the next morning was the first time he asked for the morphine and like clockwork every four hours he got the meds so he wasn’t in pain. The day he passed I went to work and as soon as I got there I burst into tears and went back home. I sat next to him for a bit and went upstairs and came back a short time later to give him his next dose and when I was about to he took his last breath. That last breath haunted me for weeks, I barely slept, now his birthday is in 4 days and he would have been 70 this year almost two years gone and I miss him more than anything.
My mom passed 6 months to the day of her diagnosis… Lung cancer with mets to the brain and bones… The fastest 6 months of my life I worked nights and slept very little taking her to nearly every appointment except a few. She kept telling me I was her angel and she didn’t know what she would do without me… And I kept telling her I didn’t know what I would do without her. And in the end I had to tell her to please go… How  much I love her and how badly I would miss her (and still do).. But that I would be fine… Hardest words I’ve ever said in my
life Because really, I hate life alot of days… Without her…. Then my Dad passed 2 years and 10 days later…. Another hard one to deal with.  All I can say is be good to your parents… They’re the only ones  you have… And it’s lonely without them… No matter how many people you have in your life.
My mom became critically ill on vacation in Costa Rica. I received a phone call and was there the next day. She was unresponsive and in septic shock. Doctors were surprised that she was still alive when my sister, myself and my husband arrived. She was so ill, they refused ICU treatment and were keeping her in an observation room. I was horrified but when my mother heard my voice, her heart rate decreased and b/p increased. I am a nursing instructor and I understood the critical situation. I begged for treatment (she was in renal failure) and then was able to transfer her to a private hospital. They did a better job keeping her clean and well taken care of however, they did not do any renal replacement therapy on her. Each day, she became more and more fluid overloaded. I would sit at the bed side and sometimes, just lay across her and pray. We finally made it back to the USA via ICU jet after 8 LONG days and landed in New Orleans. My mom did wake up and we were able to get her off the vent. She was starving and wanted to know what happened. There were a few complications but we did make it out of the ICU. Prior to getting out of the ICU, she would speak to her mom (who was not present). We would let her talk and then reorient her but I was not realizing this was part of the process. (I should have but I was so close to the situation that I did not even recognize it). My mom was moved to the medical surgical floor and died the next day. She had the worst night on the medical surgical floor the first night so I worked to secure a sitter for the time that I could not be there. I was not there when she died, but the sitter was. When we were in Costa Rica, I knew that my mother was dying and that did continue in the hospital in NO but I was trying to keep the faith. Her birthday is coming up in October and it is a very difficult time for me. She left this world in March 2016. I know she is with me every day.
Thank you for your story. I related to it on many different levels