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 died in hospice almost 2 years ago. He was very sick and faded quickly. Hospice took over and allowed us to be together as a family which was important. I will always remember the nurses and Champlain. It was like being in another world where only my dad mattered and nothing else.
My dad died in hospice almost 2 years ago. He was very sick and faded quickly. Hospice took over and allowed us to be together as a family which was important. I will always remember the nurses and Champlain. It was being ok another world where only my dad mattered.
I wasn’t there at the last moment of my Dad’s life. He had been struggling for some time from various forms of cancer and who knows what else. Ultimately it was heart failure due to sepsis that took his life. He was ready. Had been for some time. He had finally been placed in Hospice earlier that day. Mom and I had been up all night, her caring for him and me driving to be there to help her take care of Dad. He died in his sleep at the Hospice center. Thankfully, I had been to visit just 2 weeks prior. At that visit had the opportunity to tell Dad how much I loved him and that my brother and I would take care of Mom. And that Mom would be OK. I also told him that if it was time for him to die that I had accepted that. My family had been “preparing” for Dad’s death for over 20 years. Perhaps longer. Dad suffered from heart disease (a double bypass and 30 years later a triple bypass), prostate cancer, bladder cancer and kidney cancer. His prostate and bladder had been removed as well as 3 toes (due to infections). He also had a pacemaker. The poor man had suffered enough and we all knew it was his time. Our faith is what kept us going. We know that Dad is with God. We don’t know what that looks like or what that means. I feel that it is beyond my understanding at this point. We had many friends and family to be with us and share stories about Dad. Some were touching, some were funny. But they were all about Dad and how he had touched others during his life. I miss my Dad every day. But I continue to feel his love whenever I see wildlife or the mountains in all their glory. He loved to take pictures of the animals of Wyoming and flowers. I will always see the world from that perspective – God’s creations. Thank you Dad.
I read this as I watch my father approach his time to go.
He doesn’t resist using oxygen nowadays. Regardless, it doesn’t bring the blush back to his cheeks like it did before but he feels the difference so he using it.
We’ve fallen into a routine that works for us. I wake him, bath and dress him. His meals are becoming smaller and sometimes he skips dinner for a dessert with coffee. Why not? At this point, he can call the shots … well, some of them. I wake him for meals, remind him what day it is, respond to his story using the words he can’t recall to help him out. The educated man that could answer all our questions is still there but I see him fading.
The moment I’m waiting for, dreading, is when he cannot make our weekly trip to see my mom, his wife of 64 years and love of his life, at the cemetery. Then we will both know it is really happening.
I feel so connected to your story of your Mom. My Dad passed away August 18 2019 it hasn’t even been a month and it seems like an eternity. He had a massive heart attack and only survived for a day and a half in the hospital. I don’t know if he knew I was there. I was there when he took his last breath. I had a very loving close relationship with my Daddy. I’m 50 years old and he was 79 and I know he lived a beautiful life and God called him home in the way he would have wanted to go very quickly. Does the pain get any better with time ? I hear friends say you will get a sign he is in heaven and it will bring you peace. I know my Dad loved me Dearly but I have not had and peace with it or any signs or comfort. Did you get comfort or signs ?
My mother had always prayed for a “peaceful death” I used to think that was AWFUL until I saw how precious it really is. Mom was a vibrant 83 year old who developed blood clots in her bowel and subsequently sepsis. We had many discussions about what she did and didn’t want done when it was time. She was a very devoted Catholic and the Dr. suggested we get a rosary in her hands. Later that day, the surgeon felt she was stable enough to go to the OR to try to save at least part of her colon.
They needed to put her on the ventilator for surgery. I went in and told her it would just be for the surgery and we would get her extubated as soon as we could. She looked at me and said “If I don’t do well you promise to take it out?”. I promised.
I asked if she wanted me to stay while they intubated her and asked her was she afraid. She held up her hand with the rosary in it and said “I’m not afraid of anything”. Those were her final words to me.
She survived the surgery and was able to communicate with us around the vent. That next afternoon her kidneys and liver started to shut down. My siblings and I knew that we needed to keep our promise and requested the vent be removed
Our family priest came to be with us. When she was off of the vent we all went back into her room. We all kissed her goodbye and told her how much we loved her. Father had started the 23rd Psalm and we all joined him. As he said the last line of the Psalm she took her last breath.
She got her peaceful death surrounded by her family. We were so blessed to be able to be with her.
I just lost my dad in June. He was given a week to weeks to live in April. He made it 9 weeks. We had Senior Helpers there 24/7 with Hospice. We did this, my brother and I, so we could be present every day with daddy. Dad died at 94. Cancer took him away from us. We watched each day as he got weaker and weaker. During the 9 weeks we made new memories and talked about the old ones. We said more “I love you” than ever before. He was forever in his right mind and let us know he was in charge. He died on my brother’s watch. I had been there the day before and told daddy I wouldn’t be back for a few days. I had my daughter’s graduation open house to get ready for. He told me to bring him a plate of food on Sunday. He died the very next day while my brother was with him. Peacefully and ever in charge to the end. I am so thankful we had 9 weeks to say all the things we needed and to love him like no other.
I’m sorry for your loss. My mother past away a year and four months ago. It was the hardest thing to endure. My mom was sickly and became bed bound. I always took care of her as she did me. I struggle with grief everyday and no matter what I’m doing her last few months hit me like a ton of bricks. Her hospice aid was an angel and treated my mom with such love that we all leaned on her for strength. I can’t say our experience with hospice was positive as they would come and make comments like “I can’t believe she’s still alive”. They didn’t communicate with her PCP as they should have neither did they give her adequate medication to keep her comfortable. My mom was in agony. My sister and I sat in a chair for four month closing our eyes for five minutes at a time. I remember being scared to fall asleep or go to the bathroom. My sister and I would take turns and put alarms on our phones so we can give mom her medication on time as she was now having to have it every hour. I still feel as if we were responsible for her death. Wondering if we had rushed the process along. I loved and still love my mother with the same unconditional love she had for us . I still hear her cries for help it truly was traumatizing. I remember laying in bed with her singing to her to try and calm her agitation. I blame hospice for this as my mom caught an infection due to the hospice nurse not changing her cattier as required by the physician she then became septic even was hospitalized with pneumonia . The infection caused encephalopathy. I kept watch Day in and day out fought with hospice as my sister and I were my moms advocate. I have so much anger towards them they robbed me of my mother. I can’t stop reliving every moment and the events of my mom’s passing. I go to work and try to keep pushing forward for my family and because my mom would suffer when she saw me in pain. I hate when people tell me that she’s in a better place. I’m glad my mom isn’t suffering anymore, but I’m selfish I want my mom back. The sleepless nights to me was just another opportunity to savor every moment I could have with her. I would take care of her all over again if I could just have her back. People tell me I have to be strong and I get that but I’m hurting I want to just scream “I am strong but I’m hurting it’s not easy to lose someone you loved so much. I didn’t know how PTSD felt like till now. I can’t even go to the hospital that we would spend days, weeks, and long hours without breaking down till this day. I remember saying to my sister that maybe moms getting better maybe just maybe we would have a miracle. The reality was that she was going through the stages of the death and there was nothing we could do to stop it. I wanted so much to stop it. Why couldn’t I stop it!!!! I know I can’t question God’s will but I wish the day my mom passed I’d had passed with her.
Anybody that tells you you “have to be strong” needs a kick in the bum. You don’t HAVE to be strong. You are allowed to grieve, whatever that looks like for you. Nobody can tell you how to do that. It’s your journey and it takes as long as it takes. And I don’t doubt that you have PTSD after what you went through. My heart hurts for you. I hope you will find some healing so you don’t hurt SO much anymore. My sympathies to you. And if I may be so forward – a HUG as well.
Not all parents are worth lovingly saying goodbye to. Some have physically, verbally, and emotionally abused their children. Children have left them and changed in order to stop the cycle of abuse. Some have remained at their side and carried on their legacy of abuse to their own children. Sometimes love is staying away so your children never see the horror of abuse. Perhaps they die alone, perhaps they are where they are because of the choices they made. So sad but true.
I loved your story. Except for he estranged part, these could have been my words. It is Erie, and yet comforting how our experiences were so similar. I am sure many people out there can say the same. What struck me the most was when you said you are afraid you won’t be able to hear her voice anymore. It has been four years, and I still pray I won’t forget her voice. Thank you for sharing your story.