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”
I’ve lost two fathers – my birth father 16 years ago and now my stepfather who raised me a month ago. Both experiences were very different – both were very similar.
I thought I knew what to expect this second time around, but surprised myself in my ability to remain strong for my mom but then completely break down the minute I ran to the cafeteria or phone break. Unfortunately he lived outback his final days in iCU with congestive heart failure The hospital finally told us we should move to the hospice wing to spend quality time with my unscinscious dad. However by the time they moved him, got him situated and sat by his side, he had had enough. He decided to pass on his terms rather than make my anguishing Mom make the decision to take him offense his breathing assistance apparatus.
Again with my birth father I saw his struggle and breathing fade. I was sadder than possible but knew what was happening and when. With my stepfather the stupid machine robbed us of knowing. It clouded the noise in the room, it hid the shallow breaths and it robbed us of quality time. We will forever be haunted knowing he left this world with an uncomfortable mask on his face that he would have hated.
That said, I’m thankful I was there. He was the most honorable man I know and is missed dearly. Once his spirit left what was left behind didn’t really even look like him. While hard to leave the room and leave home behind, I try not to remember how he looked at that moment but remember the vibrant loving dad I’d always known.
Thank you for sharing your experiences and feelings. I lost both parents within six months of each other – Dad died 7 years ago and I wasn’t with him. He had fallen, broken his hip and then chronic arthritis affected his hands, feet, and knees. I watched a proud, independent man become frustrated and angry that he could no longer do things he enjoyed. He was difficult to care for, but I did what I could whilst working full time but I know he felt he was a burden – he wasn’t. He knew the end was close and the massive heart attack that caused his death happened whilst I was at work so I found him on the kitchen floor, at peace, but I never held his hand or said goodbye. My guilt that I have worked through. Mum? Her dementia developed slowly but with determination. The bright, intelligent, active woman became a demanding child with frequent hospital trips. She was in hospital when Dad died and had no idea what was happening, though she enjoyed the food at Dad’s wake. She became worse and though coping with the hallucinations were sometimes amusing, it was serious and frightening. I arranged for transfer to a nursing home as she was rarely lucid, never ate, rarely drank, just clawed and kicked at the air. My pretty, proud mother looked at me one afternoon and I said, “ It’s ok Mum, if you’ve had enough just let go, it’s ok I love you.” So she waited till I had popped home for a meal cooked by my youngest daughter. The nursing home rang to tell me she had died peacefully – but without me being there. So within six months they had both gone. It’s taken me a long time to work through this and feel less guilty for not being there at the end. Life carries on but the memories are mine forever. The sun still shines, I laugh with my family and friends, I reminisce and grandchildren ask questions and ask for family stories, so Mum and Dad live on and life is good again. Life is bittersweet, but that sun goes on shining and so will you. Massive hugs to those who are hurting at the moment – it’s a tough journey but you can do it. X
Sitting here waiting, watching, listening (not sleeping) now!
I lost my mother 5 months ago
As I read your story I could picture it everything in my head. I could see my mom open her eyes but not looking at us I could see her taking her last peaceful breath. I could hear her say only thing that hurts when I die is leaving my girls behind. I could see peace on her face but feel the hurt in my heart. Will it get better with time yes it will just like when I lost my father. This is final no more parents no more glue that kept is together. It will get better the aching pain but will never be forgotten. Love you mom we were blessed having you in our lives for 92 years. Thank you for all your love to your 4 children, 13 grandchildren and 12 great grandchildren.
A year ago, my sister and I spent our last week with our mother. She was sent home from the hospital to die. They call it hospice. I call it euthanasia. I started as a bad back, turned into COPD, then she got a blood clot in her lung. It wasn’t COPD. It was heart failure because of a blockage. Can’t fix that until the clot resolves itself. Send her to rehab/nursing home. NIGHTMARE! Weeks pass, no improvement and finally an honest ER doctor says, she’s dying. Nothing more we can do medically. Palliative care people tell us she needs Hospice. Ok. When would the best day be to bring her home, and where do we deliver the equipment and drugs you will need? WHAT? We’re taking her home to die, to help her die? WTF? She was delivered via ambulance on a Friday night. Her street full of cars and people heading to the neighborhood high school for the weekly football game.
She never woke up again. My strong, wonderful sister was with her 24-7. Changing her diapers, trying to give her water and food. She also gave her the meds that helped her pass. Liquid morphine delivered with a syringe into her mouth, along the inside of her cheek. I took care of mom’s arrangements. We both did what we had to do, and what we were capable of doing. I could not have done what my sister had to do. She was calm, patient and understanding. We were given a booklet about hospice that we finally picked up and read. It had the steps of death. By the time we actually read it, we realized we had just days left with our mom. The hospice nurses came more frequently as did the amount and frequency of her morphine doses. On September 13th, before noon mom took her last breath. We had both stepped out of the room for a quick break. The hospice nurse was there and called us back to tell us she died. It was surreal. Still is.
She was just 78 and 6 months before she died she was babysitting, going to the casino, Walmart, living the life she wanted to live.
I still have not resolved my role in her health care, or her death. I get anger about it at least once a day. Her regular doctor failed her, The specialists failed her. The ERs failed her. The money grubbing nursing home failed her. And I failed her.
I can’t change any of that now. It my shit to live with. I can say that I was there for her in the end. Unfortunately I was fighting with her to keep her alive. To keep her fighting to live when all she wanted to do was “sleep”.
I loved my mom. I miss my mom. And I am so thankful I have my sister.
I just spent 6 weeks watching my dad die. He also said at one point in his dying process that he had one regret…that he has not been more grateful. He said he always wanted more. This from a man who always made you feel better after he greeted you. Conversations with him were never about him. Always about the other person. I never heard him say a bad thing about anyone. Dad was a decent, good, hard working man. He was mom’s protector and it was very difficult for me to find a mate who could live up to the kind of man my father was. He did not want to die. I believe he did not want to leave mom behind. 9 hours before he died I we spoke. I asked him if he had been happy. He said yes. I asked him if a good meal made him happy. He said yes. I asked him if his work made him happy. He said yes. I asked him if mom made him happy. He said oh yes. I asked if he had regrets. He said he didn’t know. I told him I had regrets, but that a long time ago a therapist told me that I was human. Human’s make mistakes in life. It is called learning. My Dad let out a sigh and said. Really? Oh my God. Then I asked him if he had any advice for me. He sighed again and he said not now. I said I love you dad. He said I love you. Those were the last words he spoke to me. This conversation was held over the course of an hour. I remember a day earlier he said who are all these people on the plane? I asked if he recognized anyone and he said no. You are so right. You need to write down everything or you will forget. It is the most fatigued that I have ever been in my life and I watched my husband die also. I remember being tired then too, but nothing like this. My husband chose to leave this world when I fell asleep for 15 minutes. My dad did not take his last breath in front of me either. I guess both men were protecting me even at the end. I do not think I could have taken that.
I too have lost my mom. I was 2 years old when this happened so I don’t remember who she was. Thankfully my dad married the most awesmazing new mom. Dad wrote my sister and I a book about our mom and who she was and their life together when I was about 21. Fast forward 24 years, to November 2018, this was the time when I learned that my daddy was sick. I flew home to be with him, not knowing that it would be so important for me to be there. I had always thought of my dad as the indestructible rubber man, from things that happened to him that could have been so much worse, if it hadn’t been for his superhero image to me.
The day I flew in, he was in the hospital and he looked so frail. We got him home and I was unaware of the seriousness of the situation. Being the youngest, my family shields me from a lot of things, even as an adult. We had dad home and he seemed to be getting better. Despite his diagnosis of lung cancer. He was in and out of doctor’s appointments and trips to the hospital for other appointments. I drove him and my mom everywhere. It wasn’t until an appointment that we had to drive 2 hours to a special doctor in a bigger city, that I began to think something was very wrong. That was the first time I heard that his cancer was stage 4. I didn’t really understand what that meant. It can’t be that bad… dad is indestructible… he will be here forever!!! That night, my mom said that we should all sleep near dad and I was unsure why. I remember not sleeping much that night. I kept thinking, why are we doing this… he’s not really dying is he?
The next morning, the in home nurse came to give dad his meds through a permanent iv that we just had to push a button to give home more meds. He was being silly with the nurse… just like normal daddy.
We got his bed and got him comfortable. His birthday was the next day and we wanted him to be more relaxed than he was in his recliner. My mom said to make sure to say what you want to say because she had a bad feeling. Daddy had quit eating and hadn’t been drinking either. I had to go pick up my mom’s friend and the round trip would take me a couple of hours. Before I left, I gave my dad a kiss and said I love you. He replied with “Love you too Baby B!” (My nickmame) We got home and she said hi to my dad, who was not very responsive by now. About 25 minutes later, my mom said “It’s time!” And we all rushed to his bed side and told him we loved him. Daddy took this horrible breath and he was gone. That was truly the hardest thing I have ever had to do! I don’t remember the next week or so as I couldn’t function. It was 3 weeks to the day, from diagnosis to death. 8 months later, I am still not well, however, I am trying to move forward. I still have very bad days but thankfully I have my family to lean on and them the same for me.
Thank you for sharing your heartfelt ‘story’ about your feelings and thoughts during your time with your mother. Many of the things you felt during that time, I can identify with myself. I consider it an honor that I was able to stay with, comfort, and cry with my mother for her last years. And in her last days she still, graciously, tried to help ease me into my new “life” without her. Because, that’s what it was and is. A new life. Two years, and I’m still learning things, her wisdom and love are still molding me into what I am yet to become. It’s a journey. As she was dying, she told me that I would be ok without her, that I was stronger than I knew, and smarter than I ever gave myself credit for. And she was right, as she usually was! But what I wouldn’t give to be able to shower her again, get her ready for bed, and watch her as she sleeps .
Thank you for sharing. And for loving your mother. She knows the love you feel, dont ever doubt that.
This is all so true, it’s just like looking at my mother again in her transitional hours. She became my child. I enjoyed every minute of it and taking care of her. Mother spoke of all the loved ones that had gone on before her. She had conversations with them. I slept with mother every night. We held hands and slept together. She would run her finger thru my hair when she thought I was sleep. I would massage and comfort her all day. I was so privledge to have the strength and mindset to do just what I did. I would sing everyday to her. I would pray all day with her. I would hold her so close to me. I wanted the feeling to last forever. My mother was a very independent woman. She was a giver6 and now it was her time to be served. As I would hold her hands which I thought was safety reason… As long as I held her hand she wouldn’t leave me is what I had convinced my self. On the early morning of her transition I could see her body turning colors and feeling a little cold. I would get more blankets and I would lay my body next to hers to make the blood warm. I did this continuously. I had said to God I don’t know what I will do when she leave me. Would I be at peace.. will I scream… Will I lose total control?? Then finally I was Getting tired really tired and sleepy. My daughter who was her caregiver as well said mother just lay down for a moment, I’ll watch grandma. So I did. .y intent was not to go to sleep, but to just lay for a moment. I was awake by my daughter in what I thought was . Oments yet it was over w hours. My daughter said mother grandma is gone. I asked where did she go, and my daughter said she transitioned. Look like a piece came over me. As I walked over to looked at her sjeooked just like she was sleep. God took her at the time he put me to sleep so that I wouldn’t Scream lose my mind and he took her because she was ready. I miss my mom everyday of my life. I wish I could say how much I love her to her. What a perfect motner5 she was in everyway. How. How she never complain inside of her sickness. How brave and courageous she was until the end. How she loved me with every fiber being and oh how I loved her. It’s been 4 years almost and it’s just like today. Iove you my Queen. I miss you mother.
Wow! This is exactly what I went through 4weeks before my mom passed on March 12 of this year. I’m an only child and we were close. That ordeal was the HARDEST thing I’ve ever gone through. Cancer is what took her and it hurt to see the most important woman in my life go through what she endured. Thank you for sharing. Death is inevitable but I’m glad I was there in her last days as she has been there with me since day one.