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”
Beautifully said! I lost my dad last March, and everything you mentioned, is exactly what I faced, and I too, respected my fathers moments when he was with me and not with me in mind. When you express that your mom saw a woman with lots of beautiful lights, it makes me recall the time when my dad told me he was walking around his room, and then “bam,” he felt a jolt and was right back in bed. I’m pretty sure he had an outer body experience, but then he told me he saw his mom, and I knew in that moment, he would be taken from us soon. They see their angels who will come for them, and in their story of who they see, is a beautiful moment, because it conforms to everything we believe is waiting for us when we leave this earth. I wish you peace, in those moments of missing your mom. It is unfortunate, but we do in fact belong to a “club” now. A club I would rather have waited to belong to, for at least another 20 years, but, God had other plans! Thank you for sharing your story.
My mom is currently in hospice and this blog was very encouraging! Thank you for being so open and sharing your experience. Know you aren’t alone in this as your blog also helped me realize the same ❤️
There is no greater honor then to take care of your parents in the final days of their lives
God totally blessed me with 9 years of caring for them till they passed.Still at times i felt i could have done more, but truly did all that i could.
Will miss you always ❤
My mom died five years ago, my sister and I were with her when she died. She was ready – I was not. I was the youngest in the family , I always felt cheated that I didn’t have her as long as my siblings, but the last several years of her life , I was her caregiver so I had more of her. I was afraid, I’d never seen anyone die before. I’d list my dad , my brother and my son before my mon died, so I knew the pain , but I had never been with someone when they actually died.
I can so associate with this article, it brought back so many feeling I had being with mom when she died.
There is a saying , and I apologize because I don’t know who said it, but I repeat it often “ My Mother taught me everything, except how to live without her.”
I took care of my dad and mom – dad died in 2013 with cancer, mom died last year April, 2018, from congested heart failure. I loved the time I spent with them both. I still think of it as my most important role in life. They needed me, and I wouldn’t have been anywhere else.
I retired in 2016, and within days I realized mom needed me more than I had thought. She was with me every minute from then on. We laughed, cried, wished aloud things we wished we had done differently. We exercised together, I watched as she read her Bible and as she prayed (at times, these prayers lasted an hour).
During the last few days of her life, she slept a lot, waking sometimes so alert we wondered if she was rallying. The day before she died was my birthday….she woke up and sang ‘Happy Birthday’.
We watched her as her breaths became more further apart. I held her hand almost every minute during her last 24 hours.
I am grateful for this time I had with them both. We were able to share how much we meant to each other.
I am so thankful for this time….it was a gift that I’ll never forget.
I lost my mom on January 25thof this year to lung cancer which spread to her lymph nodes and then to her brain. 12 plus lessons were found. I was her cheerleader, her translator of sorts when she wasn’t focusing or couldn’t understand or remember the medical lingo going on. My dad was there too, but more because he had to be or else I would flip on him. We took turns every time she went to the hospital. My husband was amazing with caring for the kids and my best friend helped with the kids as well.
I tried to give her hope when she went into the hospital even though I knew she would never get out. I worked with seniors in a nursing home, I knew what was going to happen. As it got worse, we all knew it was happening. A blood clot formed and it became a double edge sword for drs. When the oxygen wasn’t enough, her wishes were filled that no further treatment would be given. I payed in her bed beside her and slept there.. I couldn’t leave, I wouldn’t leave… I did just as you did.. I stared at her face I put her hand on my face and I said “ my mushy mommy, I love you so much!” ( it’s a thing I called her because her skin was always so soft) I noticed her breathing differently, I have seen it before in the nursing home. I told my dad it’s happening and tried to get in touch with my brother. He didn’t answer and I stopped calling so I can have my last few moments with her. I just said what an amazing mom she was, how much I will always love and miss her. That I will take care of my dad and brother and not to worry. That I love her so much over and over and over again, and I just cried and cried… I saw her face turn from pink to
White. She took her last breath and I was too busy crying to see it. I just looked up and the nurse checked and it was done. I cried saying my mushy mommy I love you so much, my mushy mommy!!! My brother came not realizing it was too late, he panicked when..why…no.. I shouldn’t have left.. but he had to. He had to rest, he has Tourette’s and his body was a mess. After a bit I told the nurse, if she doesn’t kick us out we won’t leave. That I would never be able to leave if she doesn’t say we have to. She gave us more time then came in and said it was time to go.
I knew in my heart she wouldn’t make it to my 40 th birthday, so I celebrated turning 39 so she could be there. Some people made fun of me, others understood. But I so happy that I did what I knew in my heart.
Oh this broke my heart. I am sorry for your loss.
Thank you for sharing. My time of watching my Dad die was short. We only had 32 days from when he was diagnosed with Leukemia to the day he died. That last week was the toughest week, (dealing with someone in a fever state is a strange experience!) and I have many moments that I wish I could do over,be atringer or say just one more thing. The one moment, though, that I don’t regret at all was looking him in the eye, after he told a room full of doctors and family that he was ready to die, and letting him know that as much as I wasn’t ready to let him go, it was his decision and I would honor his choice. It’s been 5 years and I still feel the same way…and miss him every single day.
I love this. Just two weeks ago we sat with our dad during a week of hospice. He had stage 4 Large B-cell Lymphoma. Only two treatments of chemo and he was so weakened they couldn’t continue with anymore. Days went by that my mom sat and slept by his side and in the hospital every time he weakened worse. I was so sure he would get better. Nope. The drs finally told us the cancer had gotten worse and they was nothing else they could do but hospice. My daddy wanted to be home to die. He was a very private person. So is my mom. They gave him two weeks. Just two. He came home on hospice on Sunday, we all sat with him days and nights, taking turns. We notified all his families and friends. They came to see him or called and spoke with him when he could still talk. As the days went by, more and more morphine was given for his pain. Of course we questioned why so much. By the fourth day, I was so sick of seeing my daddy just sleep, not respond to my momma, and cringe with pain when moved to different positions or cleaned and changed. I prayed hard to God for his suffering to end. I no longer could stand to see him getting liquid morphine when he couldn’t even open his eyes or swallow water. Friday we all, 3 of us children, and all the 5 grandkids, took turns sitting with him and saying some final words. We each told him we would take care of momma and it was ok to go when he was ready. Never in a million years would I have thought I would ever have to do that. Nothing could break your heart more than sitting with your parent while they die. I kissed him several times on the head as he was taking his last breaths. I will carry those moments always. What hurts me most is the words he lightly spoke while still in the hospital…. “It would really tickle me to get over this mess and get better, but it doesn’t look like I’m going to.” He wanted so much to get better. That broke my heart worse than anything, knowing how much he wanted to get better, and there was nothing I could do to make that happen.
I am so sorry for your loss.
I traveled that path 3 years ago. Yet not a day goes by that I don’t have to catch myself in little things. I have to remember not to call her between 9-10 in the morning. I did that for decades. It’s a hard habbit to break. I was lucky that my siblings each took turns staying with Moma. She had a stroke. She hit her head. She was never alone 24-7 no matter where she was. ICU- ER- rehab- and finally the nursing home. We bounced back and from rehab to the hospital 5 times. Finally she just gave up. She had not been able to speak or walk or do much of anything. She was not happy. I could see it in her eyes. She did not want to be a burden. She was ready to go. She decided that she had had enough. When the therapist came to work with her, she shook her head – no. She took her left hand and swiped her finger across her neck. That was it – no more. The therapist tried to work with her but my mom slapped her hands away. Stubborn all the way. MoMA was in the hospital to rehab to nursing home a total of 13 weeks. It’s hard watching your mom just fade away. The last week she didn’t wake up once. Yet the day before she died, she was having an animated conversation with someone. Don’t get me wrong, she couldn’t speak. Heck she wasn’t even conscious. But there she was with her left hand in the air and shaking her pointed finger at someone. Then she would tire and her arm would fall back on the bed. Next minute there she would start up again. Occasionally she would shrug her shoulders and tilt her head. This went on for hours. Finally at 430 am on October 21st MoMA took her last breathe. We all figured she had finally negotiated her terms of departure. She always got her way.
Your Moma sounds kinda like mine. She was more able than yours, but had a ton of health issues over many years. She rallied and did better than the docs expected several times. But eventually she kinda wore out of rallies. The end was her decision. There wasn’t anything more to do, and her wishes had been communicated to me and her healthcare people many times. She was kept comfortable the last few days. One of the last things she said to me was “why does it take so long?” – she was done with it. She did have some aware moments in the last few days, and had some good laughs, even if she wasn’t especially communicative. I wasn’t with her when she passed, I don’t think she wanted anybody to be. But I did spend as much time with her as I could. And I want to call her ALL THE TIME, just like I always used to. At least once a day, sometimes more than once. For something, for nothing. Soon it will be the first anniversary of her passing… it’s dang tough.
I watched my mom and mother-in-law die and as hard and devestating that it was, I also felt it was an honor and privilege to be with them as they left life on earth. There was so much Grace in the room, and I wouldn’t have wanted it any other way. Thanks for sharing your story.
Yes. Exactly this with both parents.♥️
I lost my Dad January 3, 2019. He had Alzheimer and in the last weeks before he died he had Pneumonia but on the death certificate I think it says he died of brain disease. I had been takking care of him for about 6 years from the time we buried my Mom. No body knows the hell I went through!!! After the caregiver left i would always go in to check on him and give him a kiss good night and I always wanted him to know i loved him!! He was always the one man I could count on to be there for me no matter what I needed!! Now the tales were reversed and i was trying to be there for him but your right no matter what you do when they are it is never enough!!! Every time I get sad or start to cry I stop because the most beautiful picture comes into my vision of my mom and dad sometimes holding hands or sometimes arms around each other but in every picture they are always smiling almost giddy like. So then I am not sad anymore because I am so happy for my parents that they are together again!! I did the best I could taking care of my Dad and making sure he was cared for when I was at work, exercising or out with friends but people still feel like they have the right to judge me criticize how I cared for him.
I just read your story and honey don’t ever worry or think about what other people think or say. People that criticize usually don’t have a clue about what u have been through. U did your best and that is far more than they probably will do when it’s their turn to take care of some one. God bless u child.