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”
Thank you so much for sharing this. I was my Mom’s caregiver for many years before she passed just short of her 95th birthday. While it was hard, I wouldn’t trade it for anything. Taking her to doctor’s appointments which she actually enjoyed getting out, fixing her meals, just spending time with her is something I will never forget or regret. The hardest part was when she would get UTI’s and would hallucinate and totally change her personality. Until a nurse told me it was normal in the elderly, it terrified me. Then came the Sundowners which was also terrifying. The nurses also explained that it’s normal. It still hurts when I remember how they told me my Mom tried to get out of bed and was yelling for me to come sit on the porch with her. When she was still at home I had a baby monitor and would spend nights just watching and listening while she was in bed. A couple of times I woke up my husband when I could hear my Mom calling for help and moaning. When we couldn’t calm her down we’d call 911 for an ambulance. It was a rough road for the last couple of years, but like I said I wouldn’t trade it for the world. My Mom always appreciated that I was there for her and let me know it. It was the hardest years of my life but I have no regrets. Again, thank you for sharing your story.
I find myself nodding while I read your story. The appointments, the UTI’s, the Sundowners…Bless you. Thank your for sharing your story.
My dad passed away suddenly in 2016. It was his 74th birthday. Ironically he was born on, and died, the same day. My youngest daughter and I decided to surprise my parents with a cheesecake for his birthday. A few hours after we left I received a frantic call from my mother. He was unresponsive and she had given him CPR for 15 minutes until the EMT’s got there. They revived him in the ambulance but when they arrived at the hospital, he crashed again and passed away. It was hard to walk into the room where his body was laying, knowing I had just seen and spoken with him hours before.
My mom then passed away in 2019. I’m pretty sure her heart was broken. She missed my dad more than anything. She stopped eating and eventually her kidney’s began to shut down. She was on hospice for three days before she passed. We played old hymns that she loved, I laid in bed next to her, I sung to her, talked to her and told her it was okay to go. My brother did the same. I am almost 46 and no longer have either parent. It’s definitely hard. I miss them both like crazy. No one loves you like your parents love you.
I cared for my mother until she passed from lung cancer. That was 7 years ago. I then cared for my Dad who just passed in April. Very hard. Very sad. But I cherish the memories. I cherish the intimate small moments. I miss them terribly!
My mom just passed on June 15th. It has been so hard these last 2 weeks. I cared for her up until the end with my father. My dad was with her when she took her last breath. Reading your story helps me. I feel so broken at the moment but I know I will get thru this pain. Thank you for sharing your story and I too am sorry for your loss.
This article truly hit home. Thank you so much for sharing. I was my fathers caregiver for 10 years. In many ways I am grateful. I left home young and went on with my own life. I was still close enough to see my dad often but we were not as close as when I was a child. When mom passed in 2011 I inherited Dad and all his many ailments. Those 10 years where he suffered from one illness to another gave us time to bond. I always say I learned more about him in those 10 years than I did in my lifetime. My dad entered hospice in Oct 2020 after a bout with Cancer. At first I did not want him to. I spent all these years trying to find ways to cure /fix/ help him but after MSK told me there was nothing more than they could do, I accepted the fact that Dad was losing his fight. The holidays came and Dad was thinner and weaker but he still moved forward. Winter came and we really could not go out anywhere so he was mostly home, watching TV or sleeping. I work from home and it consumed alot of my time. Dad had an aide the last few weeks which helped but I was always doing laundry or cleaning or working on one of my furniture pieces and its hard when you have to be the bread winner and care for your ailing father because there just wasn’t enough time or the time I would have liked to have had with him. In 10 years we did alot , we took trips, and have so many memories but those last few weeks I wish I had been more financially stable to just be able to sit by his side all day. That will always be my regret and its my own fault due to my life choices…..His oncologist told me to just enjoy the time I had left and to not dwell on the fact that his time on this Earth was limited. It was hard because Dad always looked to me to ” fix ” him and this time I couldn’t . I also could not tell him it was over and I always tried to give him hope…..We did not have those deep talks I would have liked to have had with him those last few weeks. I was his caregiver, I bathed him and changed him and made sure he was comfortable but I could not bring myself to say , ” dad we have reached the end of the road ” because he always knew I would find a way and I did not want him to think I had to failed him……..In January he all of sudden seemed so much better. He would walk without his walker and I would find him in the kitchen at night and he was eating more and we planned at trip to Florida after Valentines’ day but as the day grew closer dad became weaker until finally he barely made it from his hospital bed to the lift chair. He refused to eat and literally lived on ice pops. Hospice told me this was normal but I felt so guilty as if there was more I should be doing. I made sure every day and night to just go hang out with him in his room so he could know I was there and he slept in the room directly across from me…
After Feb 14 Dad did a 360 turn for the worse. He suddenly could no longer speak and I had no idea why. Everyone told me all this was normal. I wish I had known because I would have recorded his voice. I would have stopped what I was doing and we would have conversed for hours. I moved into his room and slept by his bed…. The last three days he did not speak and all I wanted was to hear his voice… My dad passed away in my arms surrounded by his grandchildren who loved him… I wish I had taken more time to just talk and that is my only regret. Now today I got his ashes and while its comforting its so hard to know we will never speak again, at least not on this Earth…….My advice to others in my shoes, take the time, realize how limited time really is, speak , listen, share and forget about everything else around you because once that person is gone , you will regret words left unsaid… I told my dad I loved him.. I told him he was the BEST dad in this world. I told him he could go home with mommy but I did not get a chance to tell him I was sorry for all the wrong choices I made in my life so I feel your pain….I wish I did but I took care of him to the best of my ability for those 10 years because he was my daddy and I feel so very blessed to have a phone full of photos and videos to remind me of all the fun that we had … My mom always said ” take pictures, take LOTS of pictures ” because in the end, its all you have left …..so take LOTS AND LOTS OF LOTS OF pictures…. they are priceless once your parents are gone……….
It’ll be 14 years in June and the pain still stops me in my tracks all too often. I miss her so much. I was laying next to her when she took her last breath and my dad sat on the other side of her. I lost so much of my happy in that moment. So much of who I was…
I wish you touched on your experience with the death rattle. It is a sound I will never forget, and never want to hear again in my life. But at the same time, it was comforting? That the process was happening and going through way it should be. It was peaceful as awful as it sounded. Then all is silent, all is still.
I related to every single thing, every detail, every single thought, action, emotion that you shared in this story. My sister and I together cared for our dad. Lost him Dec. 16, 2020.
I always knew mom would die of lung cancer as both she and my dad smoked 2 packs of cigarettes a day since I was born. I kept asking both to at least smoke outside when they got older as they were needing more and more of my assistance as they aged. They wouldn’t listen. Their house reeked of smoke. When the corona virus came to the US, mom started having a bad cough (long story, but found out two months later it was lung cancer). They sent her home with hospice to die per her request. I agreed to help dad care for her. Just prior to going to the hospital they had multiple water leaks (another long story). All carpet needed replaced. Imagine the work that went into that with a house that was packed with STUFF. Their old dog was incontinent and couldn’t even get outside because of the pain (neither would agree to have her put down). Dad’s dementia became 10x worse (or I just noticed it more now that I was there everyday trying to clean up the place and take care of him while mom was in the hospital). After mom came home, dad ordered all hospice out of the house, threatened to walk in front of a truck if mom died, and at one point locked me out of the house. I had to call and get the law involved to help me which broke my heart. Mom told me she couldn’t handle the stress. I had NO support from family as no one could breathe in their house because of the smoke/dog stink/wet floor odor/etc. I basically slept about an hour a day for the week mom lived (which I didn’t even know was possible to go without sleep that long). But I took care of mom on my own and did the best I could do. Dad spent 2 months in the hospital, and now is in a temporary nursing facility the past 5 months (no room at a long term facility for him yet, plus he was recently diagnosed as c19 positive). I truly believe he has had only two showers total in the past 5 months. He calls me daily asking to talk to mom. This entire corona season has been one total nightmare. The only bright light was we had a new granddaughter born one month after my mom died. This if my “Cliff note” version…you can only imagine the entire story. Moral of the story…please don’t insist on smoking in your home if you ever expect anyone to help you. I am very sensitive to smoke smells. I don’t know how I made it through living in that giant ashtray caring for my aging parents for that week. But at least she was able to die at home with me by her side. She welcomed death as she knew she’d be able to see two of her sons (that died 20 years ago) again.
Thank you for your post. I was privileged to care for both of our parents along with my 2 brothers. They raised us with such love that it was only right that we were there when they needed us. My precious dad died in 2008. We helped our mama care for him and he died in his special place-his home. After he was gone, Mama and I became best friends and we did every thing together. She helped me through the death of my invalid spouse. I retired early so I was able to just move in with her to help with whatever she needed. In August 2013 she helped me with my second wedding-she baked 2 chocolate pound cakes and hundreds of biscuits. My husband and I still stayed to help take care of her. In January she took a turn for the worse in her 23 year battle with breast cancer. I slept with her every night to tend to her needs and to be close to her as long as I could. On February 13, 2014 my brother and I helped her to bed. When I came to be I said “I love you”. She patted my hand and said, “I love you too.” I woke up at 4:15 on February 24 and found that God had taken her in her sleep. What a blessing both of our parents were and certainly we miss them every day. But we have no regrets for the opportunity to be with them until they left this world.