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”
The words your mom said are heartbreaking. They will for sure stay with you forever. My mom’s death was sudden, unexpected. She had a slight stroke in 2012. She recovered with no side effects except a lack of strength and had to depend on a walker to help her get around. She got a fancy one – purple, with big wheels that pushed easily. Dad called it her “Cadillac “. 5 years after her stroke, she suffered another, a Thursday night, about 9 pm. Friday afternoon she suffered a major stroke. In less than 24 hours from the initial event, she was gone. We didn’t get the chance to have that last conversation, or thank you or I love you or good bye. She was just gone. Today would have been her 92nd birthday. Funny that I would read this today, when she’s been on my mind more than usual. I have since learned of strengths she had that I was never aware of. I tell her when I visit her grave. So many things I wish I had done different or better. I only hope I can be half the woman, wife, mother, grandma and great grandma that she was. Peace to you.
I lost my mom a year ago today. Although she’d had health issues, it was unexpected. I was with her in the hospital when she became unresponsive. I ran for help and after 27 minutes they were able to revive her. It was one of the most violent things I have ever witnessed, trying to bring her back. Over the next 36 hours it was clear she had little brain function. I was blessed to be with her as she left this world and went home to Glory. It was peaceful and hard. But I’m grateful I was there.
I felt every bit of whay you shared. My sister 6 years ago. My Dad 4 years ago my Mom 4 mo. Ago..
I still wonder Did I do Enough. Cant believe this has happened. We should all still be together. Just knowing they are with our Lord is comforting but I miss them so much. It is mot the same without them. Looking for my new normal.
So hard
My mom passed December 14th, 2018. Today would have been her 91st Birthday. I spent 3 years helping her after my father passed. You see, my mom never learned how to drive, and she had developed macular degeneration due to age. I was her chauffeur and eyes. I worked shift work at the time, mostly nights. So my nights off was dinner and shopping with mom, or whatever else she came up with. She still lived an independent life at home, and I spent lots of hours there helping her with things, or just talking. She had a heart attack 5 days after her 90th birthday party. She never made it back home again. There was a stint put in, then off to rehab. She came home for thanksgiving with her family, then back to rehab. I had a trip out of town, only to get a call that she’s fell. Another heart attack, rough 3 days but she improved. Then back to rehab, for one night. Then a major stroke. She lost so much from all this. She knew, I could tell. I stayed by her side for 2 weeks. Singing to her, talking, taking care of her. Hospice and nurses checked in, I think more so on me. My brother came and went, handling things I told him to. But we were with her when she left us. I held her hand and she opened her eyes and said “I love you”. A few minutes later she said daddy’s name and was gone. I knew she was waiting for him. That was the hardest thing I have ever had to do. And not a day goes by that I don’t think about her, talk about her, or cry. The holidays are so much harder now, losing both parents between thanksgiving and Christmas. But I keep on going, and when someone asks if I’m ok, I tell the truth, even if sometimes it’s “no”.
Thank you for sharing. My mother is approaching 92 and has vascular dementia. I see myself and my brother in your story.
My Mom died of a stroke that took her speech. She was in bed for only a week but at the time I didnt know how long she would be there. She couldnt communicate much but I brought her a chocolate milk shake about 3 days before she died and the pleasure on her face as she sipped it made me happy. She had been on hospice for 2 years for cancer, but died of the stroke. I was sleeping in the chair beside her bed when she started making noises prior to death. She was gone in 5 min. We had done all we could for her. Fixed up a house near us and moved her in a year after her 1st stroke. She got to live in her own house. We took vacations together during the 2 years she was on hospice. Just a little slower because of her limitations. We saw her every day. I cooked her supper most days and our family ate with her. We did our best and I have no regrets. We have the hope to see her again in the resurrection to a paradise earth. Revelation 21: 3, 4.
Being the youngest of my mothers children and not to mention the only surviving child left to take care of my aging mother was a time to grow up if I hadn’t already. Mother seemed to favor my sister over me, and my sister had passed away suddenly. We seem to always have a rocky relationship as I grew up even on into my adulthood. My husband was an absolute angel helping with the care of my mother after she moved in with us. She had Alzheimer’s. I watched my mother transition in her bedroom on a cloudy Saturday morning. I remember her crying and her screaming in pain, I felt helpless because there was nothing that I could do to comfort her. This happened one week before her passing. Hospice told me that Momma would be gone within a week, and she was. There were times while caring for my mother that I felt resentful. But I wanted to prove to myself that I was capable of caring for my mother knowing how she felt about me. But with the help of my husband and hospice I did the best that I could. I also knew that a nursing home was not an option because I didn’t want her mistreated or neglected in anyway. I am so thankful that I kept my mother with us until she took her last breath. I loved her then as I do now. I just wanted her love and approval. If I had to do it all over again, I would. I realize now that she did love me. She was just trying to protect her baby.
Three years ago on the 20th of Oct I got a call saying my mom was in the hospital. I tried to call her for a couple days and her room was not excepting calls at the time I didn’t know why. I finally got ahold of her and she told me she was sick, I asked her if I could come and help her at first she said no then after a day she said yes I could come help her. So I went and picked her up from the hospital, I live in Illinois and mom lives in Missouri. I got her and took her home I knew she was sick but I didn’t know just how sick until we got home and a couple days went by. I had only 11 days with Mom, each day I could tell she was very sick I helped her get hospice set up. Before this I never really like there help but they helped me thro the last few days helping mom and showed me what they are all about. I talked with mom I was afraid to leave her, like you said you become the mom, she apologized for everything and I kept telling her that this is what I wanted to do I was so grateful to be there with her. I just wish I knew what was really happening, it will be 3 years Nov 5 that we lost her. I’m so sad that I couldn’t of done more. Like you said they go thro stages of not knowing and seeing things you can’t see but after awhile you know what is going on. It was so hard watching and knowing what was coming but I didn’t want to let her go but I knew it was the best for her she would no longer be in pain and she would be able to breathe. The 3rd anniversary of her passing is only a few days away and I miss her so much. I love you mom and miss you so much , I will see you again. God Bless
I too went through the same thing. My mom did not want to leave her apartment, so I had home hospice come. They came twice a week to see how she was doing…. I did everything…meds, bath, etc. my work was kind enough to let me work remotely. I stayed by her side day and night except for the last night. Her breathing was so loud…I think they call it the death rattle and it was tearing me apart to hear it because it sounded like she was drowning, although she wasn’t . She accused me of trying to kill her, and I finally had to tell her she was dying because she is very sick. Her last words to never were, “You mean I’m going to kick the bucket?” I never knew what her relationship with God was like and so many times I wanted to ask her if she has made her peace with God, but I knew she was afraid of dying and I didn’t want to add anxiety to her. We were very close, not like your relationship. Only thing was she would deny she was dying to the very end. My biggest regret is not preparing her to meet God and to have her talk with Him…. for forgiveness and mercy. After her death I experienced the same questions you did. The last “1st” is coming up….the anniversary of her death, which will be on Thanksgiving Day 2019. I’m not sure how that will be, but I know it will come and go like all the other firsts and I will get through it. My prayers will go out to you as you try to find your peace through this. Blessings.