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 mom was just admitted to hospital at home about a month ago. I really was able to relate with so much that You wrote about. It really is like no other experience I’ve ever had. I’m really just trying to enjoy whatever time we spend together. We have had more deep conversations than we’ve ever had and I feel like I understand my mom on a better level. I see the good the bag and the ugly and I’m just thankful for at all. Thank you for being vulnerable in helping others that are now living that chapter. I hope I can do the same
My mom died two years ago this month and I remember every second of the day. It was my son’s 21st birthday. What a miserable day to have your grandma die! She was alert talking and arguing with the nurse and us at 10am at home and gone at 8:10 that night in the hospice center. She had been sick for a very long tine. I was so afraid she would pass while I was out of the house one day, so afraid she’d be gone in the morning when I would go to wake her up. So scared every time she’d go into the hospital. But she always came home. She always got better after being hospitalized for a few days. Not this time. This time she wasn’t okay. I wasn’t ready for her to go I no idea it was going to happen that day. I am still so sad that she’s gone! She was my only family (outside my kids and husband) and all I had in the world for my whole life. We were so much alike that now I feel as though I am her. It’s weird! I miss her. So do my kids! Every day!
My dad had a stroke and lived his last months in a home…he couldn’t talk or eat or walk but he could hug me with one arm and we would sing…him moithing the words….to you are my sunshine….we had bad weather and I hadn’t visited for 2 days and got a call he was struggling to breathe and then another that her was gone….I have guilt I hadn’t seen him or wasnt there for him…..mo.was also very sick during this time in a different hospital when he passed waiting for surgery the next morning so 2 days after he passed we finally told her and she wants even able to go to the funeral….less than 6 months later I had to force her to the er and was told she had pneumonia and would be home by tuesday…I visited her Monday after work…her dr said the prognosis wasn’t good and got a call that night she was gone…now i wish I had stayed longer but she was on a ventilator so she couldn’t talk to me…I just pray she knows I was there and how much I love her….now I’m fighting with anger at her for leaving so soon after loosing dad….I am a wreck
Thank you so much for this article. My father passed away a year ago on May 30, 2018. Just 26 days shy of his 60th bday. He went in for an emergency surgery, and never woke up. I am the oldest of his children and I was/am the problem child. We had an estranged relationship but we were working on it and just started talking and hanging out again. Worst, part was having to care for him in the hospital and make the decision to take him off life support. I can’t get the thought that I am responsible for him not being here anymore.
I hope I can finish this, I am crying pretty hard right now, your story is one that could be written for my mother and I. I was with her so much of her illness and the last days of her life, but I wouldn’t change it gor anything in the world, like you said there were so many special moments we shared, and I know she felt safe just knowing i was there next to her bed at the hospital all those weeks. And being there when she took her last breath and knowing she was going to meet our Lord,
I will always cherish that moment.
Thank You for sharing your story. God Blees You
Thank you for this post. It was 4 years yesterday when my dad died in the comfort of his own bed and in my arms. I slept with him the night before he died or Atleast I was laying by his side watching his breathing. I didn’t want to leave him.
Your story seems so familiar to mine with my mom. I knew it was coming but for some unexplained reason I thought if I did everything I could she would not die and be with me forever. But when the time came and she looked at me and told me she washed so tired and she was ready to go I still begged her not to and I know that that was only me being selfish but I couldn’t help it. My dad died in my arms in our living room floor Dec 16th 1985 and he was my best friend I was only 16 yrs old at the time and I thought No pain would ever be greater than that but I was sadly wrong. I stepped in at 16 and took care of my mom for pretty much the rest of her life and she became the kind of best friend I never knew I could have. She lived a long happy life except for the past few years when she became unable to work breathe or do any daily functions but still I had watched her overcome so much I just thought she would bounce right back. But we celebrated her 85th birthday in June and she passed the first part of August with all her family there around her just like she wanted and still I had the nurses and doctors telling me it was time for her to go and that she needed me to tell her that but somehow my selfishness wouldn’t let me. It wasn’t until the final 2 hours of her life that I realized that she was all ready gone and it was just her body staying around waiting on something or someone so I walked quietly to her put my hand over her hand and one hand over her heart I told her how much I loved her and needed her and how much I would miss her every second of my life and finally told her that if she needed to go that her family would be sad but we would be ok and she took her last breath and her little heart beat for the last time and I lost not only the mom that gave me life and made it wonderful but I had lost my very best friend in the world. Everyone that ever seen us together said we were more like sisters or best friends than mother and daughter and me and her would just look at each other and smile. Oh how I miss that smile the only comfort I have right now is knowing she is right back where she wanted to be for over 30 some years and that’s right back by my daddy’s side right back to her very first best friend right where they need to be together. My dad died over 30 years ago and I still mourn and regret I didn’t think that pain could get any greater but it has and I know that I will carry this mourn and regret for the rest of my life until I can see hug touch or just tell her I love her one more time. Please don’t ever take your mom for granted because one day way too soon she will be gone. Thank you again for your story I didn’t realize that I needed to say what I have said here today it helped me alot. I love and miss you so much momma.
It’s been 3 months since my Mom passed. The pain is still so real and sometimes unbearable. She had what they call “terminal restlessness”. I had already loss my Dad, my husband, and my brother. Hospice was there for all. They had some restless times, but my Mom had the textbook case. For almost what seemed like eternity she fought us all the way. It took 2 to 4 people to just keep her in the bed and calm. I was completely exhausted watching her go through this. So thankful for this post as I still need to heal and to face this grieving process, instead I am allowing it to assume me and not process.
I cared for my mom for 10 years until she passed. I had a lot of help from my sisters and hired caregivers. Mom suffered from Alzheimer’s. Even though I had a lot of help I also faced a lot of opposition from friends and family that refused to see her disease. Besides fighting against an abusive man that had set his sights on my mom and he worked very hard to rip our family apart, the must difficult part of that journey was the last week. Watching mom die was exhausting and difficult. She suddenly stopped eating and drinking and screamed if we tried to move her. We had to get medication that basically put her into a deep sleep until she stopped breathing exactly one week after she stopped eating. It has been almost 2 years since mom crossed over. The trauma of that journey was very real. The memories have softened. I’m not sorry that I took care of her, but I don’t want my kids to have to deal with the emotions and events that I had to deal with while caring for her.
Thank you for this. I lost my younger brother, father and mother in less than 1 year. I took care of both my parents and kept them home until it was impossible. Over 10yrs. 5 yrs and my heart is still broken.