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”
This sure hit home for me..my dad passed away when I was 10 on Christmas eve from a massive heart attack the last words he said to me and my brother was I Love Yall. I’m now 58 and my mother was diagnosed with cancer the early part of November 2018 she was put in the hospital for a week I had a trip planned to dahlogna ga for a few days after Thanksgiving mom kept asking me when was my trip I told her not to worry about it I wouldn’t be going she said yes you will you have been looking so forward to that trip I told her I can always go next year I took her home on friday from hospital and by monday she had gone down so fast all I could do was cry she would tell the hospic nurse she just worries so much and cries alot I ask her where I got that from she said not me I stayed up with her durning the day and my sister in law would stay up at night I never left her those last 2 weeks I had with her i would run on maybe 3 hrs of sleep aday my mom was my best friend we did everything together the day came on Thanksgiving it was only hours away I sat there and held her hand and rubbed her forehead told her I would take care of my stepdad and everything else when shes ready to go just go mom took her last breath about 10 minutes later.i miss her so much I’m just thankful she didnt suffer longer and went peaceful.
Wow. Apart from a few small differences here between your story and my experience, this is very similar to what I went through nearly 5 years ago with my mother.
She often would look up towards the corner of the room and ‘chat’ with her dad and others and would say she wasn’t ready to go yet, then snap out of it and return back to me and our conversation. I believe she saw something that our human eyes don’t.
She also mentioned many times, of her disappointment of not doing certain things in her life and this really resonated with me to the point where people noticed that I had changed a lot after her passing.
I too held her hand and helped her wash, bathe, brush her hair, dress and fed her, just like you mentioned and it really felt like the cycle of life has reversed for us.
She was always a strong woman and we only cried about her dying once together, then she wiped her tears and said to me ‘it’s gods way, there is nothing else we can do but except ir’ Wow.
After 7 days in palliative care, and me not leaving her side and loosing 6 kegs that week, one doctor told me to go home, and she wasn’t dying in front of me and that I should let her go. It was the hardest thing I ever had to do but knew I had to do. So once I packed my bag of belongings I have acquired over the past week I told my uncommunicative mother it was time to go and see you on the other side. I left to go home and sobbed my heart out.
5 hours later I got the call from the hospital that she had taken her last breath and was gone.
Returning back to the hospital I saw a beautiful light above her and she looked so peaceful, no longer in pain and in heaven finally.
Thanks for sharing your story, yes I cried like a baby once again and it’s been a while since I did that. Thank you.
That was a sad story but good to hear the story if your mother passing away.my dad pass away and my mother pass away years ago .I felt so guilty for her death because I was not there for her and I would be so mad and over whelmed in taking care of her.That story of yours brought back so much pain and I think about my mother Every Day I miss her and wish I could go back and I would of change so many things fory mother.I Love her so much and wish I could have been more patient with her and helpful and understanding.I went to a priest and he said we can only do our best that w can and help me some put that pain is still in my heart tucked away and lots of the time and comes out like right now when I read your story .Your story helped me realized other things .Thank You for your story of your mom!!….Lucy
I lost my Gram last September to stage 4 brain cancer. She was a second mom to me. I was her caregiver from the day she came home from the hospital after being diagnosed to the day we put her in hospice. She was given 3-6 months. She was diagnosed May 1st and passed September 1st. She was given 3 big doses of radiation In 3 days rather than having her do it in 5-6 weeks. That’s the biggest thing we regret about her care. The doctor made it sound so good that she’ll regain mobility in her left side and she’ll be walking again and she’ll live to see her 95th birthday. It was all the complete opposite. The radiation sped up her death. As the weeks and months went on it was more and more challenging to care for her as I was doing it myself 99% of the time since my mom has her own house to take care of. We had home care coming a few times a week but all they did was take her temperature, blood pressure, half ass bathed her, and ask how she was doing. They didn’t cook for her, give her meds, give her a full wash down, or change her, I did. By the middle of August, we realized home care wasn’t necessary anymore so we stopped it. That’s when hospice stepped in. Gram wanted to die at home and we tried to grant her wish but in the last week she was home it was pure hell. She stopped eating, she was sleeping about 22 hours a day, when she was awake she was yelling out during the night and was saying things like “I wanna go home” Since Gram had her own house, I was calling my mom in the middle of the night asking her to come over to help me change her cause it was too much doing it alone cause Gram was yelling at me and crying out in pain. Finally my mom packed a bag and stayed with me to help. Gram was on hospice at home for a few days before we realized we just couldn’t do it anymore. It was too exhausting. The day we put her in a hospice facility, she was in so much pain you couldn’t even lay a finger on her without her crying out, even after giving her liquid morphine. She went in on Monday night and passed Saturday night. The night she passed we stayed as long as we possibly could. The extended family came to say their goodbyes, reminisced and wrote memories in a memory jar. Before leaving we all stood at her bedside telling her it was okay to go and we’ll all be okay and we all love her. We got home, got settled in to relax and about an hour later we got the call she passed. I believe she didn’t want us to be there when she passed so she waited until we all left. We figured she saw us go through enough pain of caring for her that watching her go take her last breath would be unbearable. Being her caregiver, the only thing I regret not doing is not being more patient with her. We would have big arguments over little things. I didn’t realize at the time that it was the cancer making her say things that would frustrate me enough to start an argument. I wish I could take that back. I miss her every day. I was with her 24/7 while she was home with the exception of going to see Taylor Swift 2 nights in a row but she understood, she knew how much I love Taylor. This past Sunday was the first anniversary of her death. We had a mass said in her honor, went to her favorite diner for lunch and went to her grave. Your story definitely hits a little too close to home. Thank you for sharing.
Well I guess I can say that you’re an angel they came into my phone just happened to pick it up get the latest news and read your story I don’t know what to say I lost my stepdad last week and lost my mother this week was prepared for one but not the other yes I feel the same way and I was a disappointment wasn’t good enough to my parents thank you for that story your story about your mother
As I read this it was pretty much exactly the way it was with my mom, who I lost December 4,2018 at 8:44am. This was the hardest thing I’ve ever had to deal with let alone waking up to find her gone even when I sat in the recliner next to her. I went to work and worked 40+ hours a week and still went back to her house and took care of her, I always said that I would take care of her no matter what even if it meant changing her, bathing her, wiping her after she went to the bathroom I made that promise to her and I kept it but it still doesn’t make it easier on me. I was so bad and missed her so much that I couldn’t accept the fact that she was gone , I was about to leave my fiancé because all I wanted was my momma back. I would call her everyday no matter what even if it was just to hear her voice and to tell her that I loved her very much. I have a lot of my momma in me, the hard working woman that she was I have that and everything else I have a lot of memories with momma but it still doesn’t fill the gap that I have in my heart. I was afraid to ask for help because a part of me just wanted to be next to her in the grave. I was afraid that if I asked for help they would lock me up thinking I was crazy I cry every day and night wishing my momma was still here with me I hear her laugh and the way she said things. The biggest thing I always hear is Missy you need to stop working so hard and so much you’re going to wear yourself out and it’s going to make you old faster lol. I never have listened to her about that I feel if I work harder than I can try and keep my mind at ease but it doesn’t always work. God bless you all.
My experience with my dad dying was something that I carry forever in my heart. The first time my dad got sick, he was told that it was just back pains and that once his medical insurance kicked in he could go see a doctor and get it taken care of. As a couple of weeks went on he fell in the hospital again and I of course was there with him. As we were in the emergency room it hit midnight and I said happy birthday to him and as I sat there with him all I could think about was that I can’t call off from work and let me tell you that’s one of the guilt I carry with me was leaving him there alone. He told me to go home and me like a dummy went home and left him there on his 57th birthday at the ER. My stepmom picked him up and took him home when they were done with him and in less than a week it came to the point that he couldn’t get up from the sofa at all, he lost weight and he had no appetite. He ended up in the hospital and I was literally the only one who took care of him. I took time off from work and I went to the hospital every single day and took care of him till it was time to leave at 8pm. My stepmom really didn’t help much with him and she didn’t take time off to help with him, but that’s her story to tell. When we thought it was the end for my dad, the hospital sent him to another hospital to get emergency surgery because the blood was flowing out of his body. When he got the surgery done he was doing much better getting up and walking around and then all of a sudden again he couldn’t get up. The hospital finally sent him to the hospital he needed to go so he could get a liver transplant but when the doctor came in the news he had for us threw us off bad. He came into my dads room and said that my dad had liver cancer and due to the previous surgery he had the cancer spread all over his body and he only had 3 months to live. They sent my dad home under hospice Saturday and my dad died Friday that very week. The pain of loosing my dad and not being there for his last breath haunts me and it will forever haunt me. My dad was my best friend and it’s been 3 years since his passing. I miss him everyday, I think about him from the moment I wake up till the moment I fall asleep. That’s my experience with my dying parent.
I had already gone through losing daddy at my home. But mom was by my side. Now a few years later, I was losing mother in the same bedroom. This time I would be alone. Mother had several strokes and couldn’t speak or move. One night I bent over and hugged her and started to cry for I knew the end was near. I told her that I loved her so much and didn’t want her to leave me. As I held her, I felt a tiny arm reach around my back and patted me gently. All those last weeks, she understand and know I loved her. She left for heaven the next day.
My dad passed away 10 weeks ago. My story is much like yours. I had 3 siblings at the time. Since Dad passed my youngest sister died from a brain aneurysm at age 49. Anyway, we took turns staying with him. He had pancreatic cancer. The last time he was able to communicate was on Father’s Day. He died 3 days later. But I started a journal about the time we started staying 24/7. That was in March and he passed in June. We made some great memories in that time. It sounds crazy but we are a close family so on the weekends the house was packed. I jotted down all the things he would say that I knew one day would make me smile again. We took turns staying with him but I was there most of the time. Sometimes for days without going home. I was the only one that didn’t work so I stayed all the in-between times. When the hospice nurse said he had started to transition and would be gone by the weekend I decided to stay still the end. On Wednesday night June 19th around 9:30 everyone said their goodbyes and I live yous. We even cracked a few jokes about my aunt meeting him at the gate. We told him she was going to light up the sky to start the party when he got there. Well everyone nwent home, it was just my dad and myself, his oldest child. I had his music playing, pulled my chair close to him and just kept talking to him and watching and listening to him breath until it stopped. With his hand in mine he left this world so peacully. I had heard horror stories about being with someone when they die. It was nothing like I expected. He was finally at peace the pain was gone. And in that moment my mother list her husband of 61 years and I lost my Dad. But just like we told dad my aunt started the party. He passed at 11:43 pm and within 15 minutes it was thundering and lighting but it never rained. I guess he made it to his destination. Sorry it was so long but that’s my story.
It has been just shy of one year since my mother passed away. I was ever so thankful that we were given the notice that she had months to live due to her stage 4 lung cancer. It gave us the real chance to pour our love into her as best we could. I was lucky enough to be her shower girl every other day for months, that was until the day she became much, much weaker. I didn’t know at the time that it was, in fact going to be our last shower; instead, she just seemed a bit more short of breath and it was harder for her to even lift her feet. She tried to be so strong and I tried to be so calming and soothing, reassuring her this was just a temporary phase. I am truly so grateful that I was not only able to help her in her time of need, but that she picked me to be her helper. She would reminisce a bit about how I always tried to make everything fun. I will never forget her compliment. She was also funny, commenting how in her day, they didn’t make underwear very cute like mine were. I loved seeing her cute hands and fingers, shaped much like mine with her cute little nose and cheeks. I do not want to remember how awful her teeth started to look like in a matter of days.
As the year death anniversary nears, I was thinking how most people do not witness their mother’s last breaths. Nor do they walk their father through watching the love of his life, pass on. I feel like I am always going to want more time with her and wish I had spent more time with her when she was healthier. There are going to be random unanswerable questions pop up in my head. I will continue to be curious about her thoughts or the little details that we don’t think to ask about on a day-to-dat basis.
Her death definitely made me feel destructible and like all of days are absolutely numbered. None of us make it out alive and my goal was to make her as comfortable as possible. I think we achieved this, but it wasn’t less painful for us. I will attempt to keep her alive inside of me for she taught me how to be strong, independent, educated, passionate and to live my life while I am still breathing.