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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803 comments on “Caring for a Dying Parent In Their Last Days – a Personal Story”
I lost my mom 37 years ago and I can tell you firsthand that you never forget the last days you spent with her. As a woman, we ARE our mothers, we become what they taught us, what they thought of us. My mom was a kind and lovely soul who died at the age of 56. I had recently given birth to my second child and she passed 4 months later. I went through many of the emotions you describe while she was dying. I too thought that I was a bad daughter, but I wasn’t, I was the best daughter that I could be. Just like now, I am the best person that I can be. Im not perfect, I am totally flawed, but I care. I care about the future, my sons, my grandsons, my community. If there is one thing that I have learned during my lifetime, is that we all die when we are meant to. I wish you peace, it will come. You will never forget your mother, nor should you. Just honor her by being your best self. That is all that any of us are meant to be.
Nothing in life ever prepares you for the moment you watch your parent die. I lost my sweet momma this past August after a long journey with dementia. It was the hardest thing I’ve ever done, but I cannot imagine not being there.  I miss her like crazy… </3
I cried for my Dad more than a year before his passing. I just knew at that moment watching him nap, it was the prelude of his dying.
I spent the next year helping him get peace in his life by leading him to forgiveness, for others and himself. He shared things with me I wished he never burdened me with, but I carried that honor til this day.
When his heart gave out and he didn’t awake after surgery I prayed for a miracle that didn’t happen. When he was moved into hospice after ventilation was removed I stayed with him continually while other family members came and went. I stayed in his room, played beautiful music and talked to him.
As I rested next to him I was sure I saw him turn his head and eyes to me as to acknowledge he knew I was there.
I knew there would never be a man that would love me more, and I took in every last moment.
I miss my Dad. I miss him so much.
I spent days with her while she was dying. It took longer than doctors thought it would because her heart was still strong. She hated lightening. The huge window in her hospital room was ablaze with lightening one night and she squeezed my hand with every bolt. they said she was in a coma, but she heard that lightening and held my hand so tightly. I did study her hands. They were mine only older. I talked to her so much about so many things she did for all of us. When her breathing became tough, I got into bed with her and held her on my shoulder. When that next breath did not come, I told her to please continue to watch over all of us from heaven until we would be with her again. I held her at her death as she did me, when I was born. How I miss her still.
So sorry for your loss…I too along with my sister did this with our mom alone…hospice was not there for us at all during our time of need…mom had a slow long painful death and my sister and I still to this day 1 1/2 years later can not forget what we went through watching, hearing and feeling….God I miss my mom….she was so brave….
My mom had dementia and I moved her in with me. I took care of her for 7 years. It was a difficult journey, and different from yours as she had pretty much stopped talking. Sometimes she would say things, sometimes understood sometimes I didn’t. Although when it came time for her to pass, it was quick and peaceful. I was lying in bed with her, as I knew something wasn’t right. Then I looked over and there was a tear coming down her face. She had no way to communicate to me, and a couple of people said that was her way of saying goodbye. I decided to put her back in her hospital bed so I could elevate her head. When I was putting her in her bed, I said the words I never thought I would say go mom, it is okay, just go. I got in bed with her, her breathing was shallow, and then she just stopped breathing. Her death was everything I prayed it would be. It was quick, peaceful and I was holding her. When I go up to call 911 I held her in my arms and told her Our God is an awesome God. I am crying as I write this. I miss her every day. It has been 15 months and I still struggle knowing I will never hug my mom again in this lifetime. It is hard to know my mom isn’t in this world anymore. I forgot to say her last words to me. It was a couple hours before she passed. I was giving her a drink and she said, plain as day, what are you crazy. LOL. Also, in hindsight the signs of her body getting ready to transition had been there. She too was communicating the best she could with someone I couldn’t see for a couple days.
My mother passed a couple days ago. Your article was as if you were in my mind as I sat with my mother who I thought should live forever. I could never imagine my world without her. She was my best friend. We loved spending time together. We laughed and cried about the same things. Her and I could just look at each other and know what each other were thinking. I was lucky to be by her side when she finally decided to give up breathing. She hadn’t drank or eat hardly anything for three or four days. I swabbed her mouth with a wet sponge, but I still feel I did not do it enough for her.
In my agony, all I could think to say to her is how courageous I thought she was. Her and I often discussed our faith. We both are believers but when death is as near, we seemed to participate in the possible realism our faith may be lacking. I was afraid for her. I told her I am sorry if I made the wrong decisions for her, and that I loved her so much. I held her wonderful warm arthritic stricken hands until they grew slowly cold; I could not let go and did not want this to happen to her. The pain that lingered was I could not do anything to save her from the imminent future she was seemingly having to embrace.
All I could think is that her experience would some day be mine when the time came for me to cross the threshold of this world to the next – to learn from her experience – so I can make it easier for my children. She lived to see her 96th birthday only to leave this world the following week. I think she sort of knew it was coming, but I don’t think she knew for sure; nether of us did. Every moment of our three week journey together from her being admitted to the emergency room with severe pain to the moment she left me in the long term care unit I spent hoping she would improve and come home and her and I continue to enjoy our time together.
The whole situation seemed a frustrating mystery, and I could not ever seem to get a straight answer about her coming home with me. Unfortunately, the last thing I said to her was on Friday evening after spending some time with her was “Mom please don’t cry, it hurts me – I can’t stay I have to go home and get some rest.” The next day I went to see her, her mind was gone. Two days later she drew her last breath.
I could beat myself up about those last words I said to her gazing into her teary eyes, but I did not know. I have a void in my heart and it will always be there for those final words I said to her when she needed me. But, I have to comfort myself that she knew I loved her the only way I knew how; I just hate myself for leaving her that way on Friday. She is no longer in that horrible pain, and I am happy about that. In fact, I am relieved she is no longer suffering. I came home that day and immediately threw her medicine bottles, laxative medicine, half drink water bottles, and half eaten fiber bars in her garbage. I was angry our plan did not play out the way I wanted – then I sat down and cried. All I had left of her were her glasses we worked so hard to get, and her new dentures she never fully appreciated I had brought home with me after her passing.
The thing I am focusing on is celebrating the wonderful mother I knew her to be as well as the funniest, sassiest, feistiest woman I will ever know! Her CNA’s and Nurses all loved her because she would sass them and ask them for medicine. I am so thankful for her and all of  them – angels who filled in the gaps of mine and her experience.
My mother was my best friend. I stayed a week with her in the hospital never leaving her bedside. She asked me to forgive her.I told her nothing to forgive since she was the best. I told her to forgive me since sometimes I could be impatient. It was personal and intimate. Wherever her mind was I went there too never trying to correct her. I told her I was there when she faded into unconscious. She said ” I know”. She passed away peacefully.
My dad passed 6 years ago it was the end of June, he was 82. It was the longest, shortest month of my life. He had cancer for several years and that spring you could tell he grew more frail. Â He wasn’t able to play golf anymore, he was getting too weak. The first weekend of June we took him to the ER where he spent the night then was transferred to a larger hospital that could care for him better. Â He was back home several days later and then started his chemo again. Unfortunately that proved to be too much on him and a trip by ambulance back to the hospital for an emergency surgery. Â He was intibated and we never got to have another conversation together. He was with us that following week, our “conversations” were now done through our eyes, and the squeezing of hands. I was at the hospital first thing in the morning to “have” coffee with my dad, my time with him. Â I didn’t want to miss the doctors in case they started their rounds early. Â Then later in the morning my siblings would get there and bring my mom. Then “the” day came, I was not the first one at the hospital, my brother was and delivered the not so good news. Â I knew this was the end and I didn’t have the courage to go tell my dad. Would he have been able to hear or even understand, I don’t know. Â I regret it to this day, I felt like a coward. Â Later that afternoon, they took him off all the machines and made him comfortable with meds. Â He slept for many hours surrounded by family. Eventually everyone went home except for us kids. Â Mom held his hand and did not waiver, my siblings and I all drifted off to sleep in the wee hours of that Saturday morning (the 27th), that’s when he finally left us. Â We were wakened by my mom yelling out to us, we were there as he took his last breaths. Â Oddly, I didn’t cry at that time. Â I think I was cried out and was at peace now that he wasn’t suffering anymore. Â We all kind of joked, dad had always been an early riser and that’s when he preferred to play golf. We figured, he had a tee time to get to with some friends and my older brother who had gone before him.
My father passed away just a mere 3 months, 24 days ago. My mind often drifts off to him and the last 3 weeks of his life. I experienced many of the same things you experienced, but again, some very different. My father was a workaholic and driven to acquire much in his life. My mother was the love of his life and he would do anything to please her narcissitic heart. She prevented me from being able to have any type of meaningful relationship with Dad. I knew he loved me, but couldnt show it because she would make him pay for it in unkind ways. So, he would toe the line. She became diagnosed with Alzheimer’s Disease in 2020. Dad looked after her at home until 3 weeks before he passed away. He cried on the phone, “Please come and get her. I can’t do it anymore”. So, we brought them both to the hispital…Dad to get admitted for pain control and mom to just be present. Surprisingly, the doctor sent dad home and admitted mom! Talk about a twist! My sister then left for Newfoundland for a 2 week “vacation of a lifetime” with her husband of 30 years and a slew of their friends. I took care of Dad at his home, bathing him, feeding him, comforting him, giving him his medications, changing his clothes and diapers. As he had end stage prostatic cancer with mets to the bones, he was in pain and being that I am a registered nurse, I made sure he was well medicated for that. I had the awesome privilege of being there when he most needed me. We talked and he shared intimate things with me. I learned important information from him that I will never forget. We sang church hymns together and laughed. But then, one morning, he turned over and looked me in the eye and asked me, “Cindy, what’s gonna happen to me?”. I knew he knew he was near the end. He became a very small child, a shadow of his big strong self and I had to be completely honest with him. He wanted to know. So, I told him what would happen and we held each other and cried. Oh how we cried. He told me that accumulating “stuff” meant nothing and that family meant everything. I called all the family, since I knew his heart for family. Everyone, and I mean, everyone, came home and each one has pictures and memories to hold forever. I made sure that his 4 girls were present and together for the first time in 20 years for him to see, along with our mother. We all sang hymns to him in his room. I made sure that my daughter had time with dad. She was pregnant with a little boy and I asked dad to tell the baby a bit of advice. We took beautiful pictures with his hand on her belly, talking to her. My daughter in law, was also expecting and we did the same for her. My children each had pics and time to spend with grandpa. My sisters’ children all went to see their grandpa. Each daughter went to see dad individually. We had conversations that were intimate and meaningful and we asked questions that we needed answered that only he could answer. He told me that I was a good, good daughter and that he was sorry for the wall he had erected between us for all those years, because of mother. I had always known it was never his intention, so this was a grieving point, beyond measure for me. He also told me that he was very, very proud of the woman I grew up to be. I asked Dad to pray individually for each of his daughters and pray the right hand of blessing of our father over each one. He prayed with love and authority. I had to have the hard conversation with him with each of us present about going to palliative care. He said to us, with tears in his beautiful blue eyes, “I don’t want to do that, because I now have all of my girls together and we are a family together again. I want to live and be with all of you.” I knew he was in terrific pain and it was time. So, we moved him into palliative care and we stayed with him. He was lucid until we put him in palliative care and he was only there 2 days before passing. He hallucinated and there were funny ones and odd ones. We laughed and cried. We held his hand, we hugged him, we sang with him and took pictures together. We savoured as many moments as we could. Covid restrictions made it next to impossible, but we had fantastic nurses who helped us have the best of a bad time with our dad. At the very, very end. I went to dad’s room. I knew he was slipping away fast. I called my sisters. Everyone was running to get there beforehand, to have just one last moment. I sang, “It will be worth it all, when we see Jesus. Life’s trials will seem so small when we see Christ. One glimpse of His dear face, all sorrow will erase. So, bravely run the race, till we see Christ”. I sang it 3 times. I held him and thanked him for giving me breath, for loving me throughout life and that I will see him again. I kissed his cheek and played, “I can only imagine” in his ear. I felt him shudder and then he was gone. My daddy was gone. What he hadn’t been able to give me in life, he gave me in death and that was the love and respect of his last breath. I don’t think it could’ve been a better death experience for Daddy’s oldest girl. Mom is still alive. I struggle everyday with our relationship. She has Alzheimer’s, but is still very capable of hurting me. My prayer is that I can forgive her and be able to love her with a true and honest heart, despite our past. I hope this journey can help others with the loss of a dying parent.
My mom taught me about life and showed me how to die.
my dad died when I was 22. My mother when i was 23. My husband has an 85 year old dad and 80 year old mother. What I would give to have that gift.
How ironic that this appeared on my Facebook page tonight. I just arrived to see my father who will be 100 in April, if he makes that date. He’s taking his journey home and I am so grateful to be here with him. My mother died 17 years ago. I have been the one who has spent the most time with him. I’m not full time care but I found the full time care. He’s comfortable in his own home and I’m so grateful because that’s always been his wish.Â
Thank you for your words, so many things you shared are similar to what we are experiencing now. It helps to hear someone express my feelings.
My mom passed away 5 months ago and reading this brought it all back to that week in August. We had a very volatile relationship. She was mentally, emotionally, and verbally abusive to me. I finally told her a few months before she passed that the abuse had to stop. I don’t ever remember her telling me she loved me as a child. The last words she did say to me were that she loved me. Now I feel guilty for standing up to her which I should have done years ago! I have this sadness, anger, resentment, and a void I am trying to deal with. I am seeing a therapist which is helping. Reading your story made brought back all the feelings like I’m not alone, which I’ve known. I read all these memes about loving relationships other women have with their mothers and I feel so alone. Thank you for writing this as it made me cry and they were tears of relief remembering I am not alone.
My sisters and I took care of my Mom when she went into Hospice. She was at my home. My Dad came and lived with us too. We invited extended family to come and visit with us/her (mostly us as she was often in another world), and they came! Mom was in the living/great room. We used a room divider screen to give her privacy when we needed to care for her. Dad slept next to her in a single bed. It was a wonderful experience. God was with us, as we could not have done it without Him. What a blessing for us. Mom was 90 when she passed, she was with us for 28 days in my home. Hospice was wonderful and taught us so much. Dad passed two years later; he was 93. We were able to bring him “home” to his condo where my sister and her husband lived with him since Mom passed. He’d gone into the hospital for a procedure, but while there took a downturn. He was home only one day, but my sisters and I were there. Hospice again helped. Bless you all who are long-term care providers to your elders. I do not know how you do it. The short time my folks were dependent upon us was exhausting, and only by the Grace of God were we able to have the strength to be with them during this time. And I am so Grateful to have been able to be part of my parent’s journey.
I can’t stop crying after reading this.  I cry often for my father.  Such a painful and traumatic experience that I wouldn’t have done any differently except I wish I could have taken his pain away. He was sick for many years and the last few months were the hardest.  The last days were terrifying and watching his last breath is embedded in my mind forever.  Love him and miss him every single day.
My 96 year old dad passed on Christmas day. Your post is so, so very close to home.. Everything you say is so true. My brother and I took care of dad at his home because my mother passed in a nursing home and i said i would never do that to anyone again. Dad had hospice care and i can’t say enough good about them.. Their help was absolutely necessary and we appreciated everything they did to help dad through this. (and us!) In the end, it was a mixed blessing. dad was in a better place, no suffering, no pain; catching up with is 8 syblings and his loved wife. thank you so much for sharing your experience.
Thankyou for writing this very persona; experience. My mum passed a year and half ago in pallentive care. I still remember as it was yesterday, “Mum, you go go now, be at peace”. It has been a consant struggle since especially as i see my dad so heart broken. Mum passsed on their 46yr wedding annerverary. X
My father passed away 3 years ago. Now looking back it was fast…..at the time it seemed like an eternity. He passed from copd. I remember bringing a picture that my young daughter drew for him to the hospital (she wasnt allowed in). He said to me “it looks like im walking with an angel”. He had a very hard time walking since he couldnt breath well. He said to me that pic is of me and autumn (his grandaughter that drew the pic) walking together. It broke ny heart. He wanted to see her one more time…..he knew. He came home a couple weeks later….declined even more in is his heath. I didnt see him the first day he was home. I regret that whole my entire being. Me and his grandaughter went to see him the second day. His eyes lit up. They exchanged some jibber jabber….a coloring page and a pillow that said dont give up. He died an hour later with me…my mom…my bother….and his grandaughter holding his hand as he passed. I swear he was waiting to see her one more time. Thats why he lasted so long. Hardest thing ever in life.
Both of my parents are passed, and i was with my dad as he opened his eyes and reached up, as he took his last breath. My sister and I believed he was reaching for my mother who had passed about 8 years previous. This article was very well written and “right on”. I read it today because now, I’m the one that’s dying and I’m hoping for ways to help my own daughter deal with it. Which in some ways is as painful as watching my parents pass. Â
Today, 12/23/21, I lost my dear mother. A friend sent this story to me and describes so many similar things I’ve gone through in the last couple years, and then just recently as her body was preparing to leave this earth! This has been agonizing, like a birth, in a way. I will miss her incredibly but I’m happy her body is not fighting any more!!