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”
I am so sorry for your loss.
My sweet Daddy is in end of life comfort care. My parents have lived with my husband and me for 6 years. For the last year, my Dad has continued to decline drastically. My mom was able to get him in to a nursing home. She was not sleeping and had to do everything for my dad. It has been heart wrenching to watch him slowly get weaker and more frail.
Thank you for sharing your experience.
I became so emotional reading this article & yet I wish I had read this prior to my mother’s death, five years ago.
Thank you for sharing your story. I would like to share mine with you, but it will have to wait a little, because it to hard to put into a few paragraphs.
I will put my story out, and I will share it with you.
Thank you you’re words were like mine.
Thank you for sharing your story. I would like to share mine with you, but it will have to wait a little, because it to hard to put into a few paragraphs.
I will put my story out, and I will share it with you.
Thank you
I have lost both of my parents my dad in November of 07 and just lost my mom in July of 19. My mom had thought she had a stroke so for 2 months I am helping her walk, bath, eat and sometimes drink. She goes to a Dr appointment and they want me to take her and have blood work done and have an xray done of her stomach because I asked them why it was so hard. Then i received a phone from the Dr that seen her at her appointment and she thinks my mom needs a unit of blood so I take to the hospital and they admitted her to the hospital and the Dr making his rounds ask me how long she had the mass on her right kidney. I looked at him and said what mass these is the first I am hearing about a mass. So he takes me and shows me the scan. And it is 3 times the size of her right kidney. And the he points out the she small masses on her lungs. So on Saturday we see a Dr that has order more scans and test. So on Monday they come in start talking to me and tell me that it looks like cancer and they don’t know what kinda but due to the scans they can see that it has spread to her lungs and possible her heart. And they ordered an MRI of her brain and they come in and tell me that she has a tumor on the front part of her brain that was causing the left side of her body to be of no use to her. Which is why she thought she had a stroke. So they come in Tuesday and tell that she does have cancer still don’t know what kind but it is stage 4. They do a lung biopsy and they type it and do slides and it comes back with renal cancer. That day she has a seizer and they don’t think she will make it thought the night. They tell me to get family to the hospital to say there good byes. That was the hardest part because my little brother and his family were on vacation in Hawaii. So I call and ask him how soon he can get home that mom may not make it thought the night. So I get family to the hospital and she makes it thought the night my little brother arrives Thursday morning at the hospital and we get told the she need hospice care and we were OK with that. They tell that she need inpatient care of hospice. So we get her moved that night and family is still coming to see mom and speak to her because she was able to speak a little bit. So we never leave my mom side if we did it was to eat or to go to the bathroom. One of us 3 kids stayed with at all times even my 16 year old son stayed at her side. On Saturday night I was going home to get some sleep and my one oldest brother was saying with her. I kissed her on the head and told her that I loved her and she looked at me and said” I love you all too” after that she never spoke again. We all talked to her and I watched and just took in the way she looked because I knew that I would never see her again. On Monday my little brother had to go back to work and so did my sister in law. So I stayed with my mom Monday night in the hospice place I talked yo her and told how sorry I was that I was not a better daughter to her. And that I was sorry that I called her in many ways. My older brother texted me and told me to play the song my heart will go on so I did. My brother came to stay with mom while I went home and showered and came right back. He said he was going g to get lunch when I got back and he and my son left to go get us some lunch. I went and played the song one more time and when it ended I seen that my mom was gasping for air so I walk to the door and asked the nurse to come and check her breathing and she walked in and told me she only had minutes left I told her I need to call my brother but before my brother could get back my mom passed away I was holding her hand and I told her to go and that I loved her so much and she took her last breath and went. That was the hardest day of my life and it is like you can never unsee that.
Sher, thanks for sharing this. Every death is different. It’s seems those that are still living end up with the most regrets. I watched my father die from cancer when I was only 23. He fought hard, he was only 50 years old. 6 months goes by fast. My dad has been gone for 39 years. I was a daddy’s girl. He missed out on so much of life.
I lost my mother and best friend without any notice. She was not sick, I was on vacation and my brother called me early in the morning. I can still hear his crying voice telling me mom’s dead, mom’s dead. The guttural scream that came out of me, I was in shock. He found her on the floor with the phone in her hand…she tried to call 911. It still makes me upset when I think of that call. I miss her everyday. It has been 9 years since she left us.
Almost 3 years ago while on vacation my husband got sick. When we got home he went to the doctors. Stage 4 cancer. Doctors gave hope of 3 or 4 years with this super chemo medication. He was in pain, moved to bones. The but original tumor was improving. Between the pain and lack of appetite he became weaker. Mike had such a strong will all his life and was sure he would be this. He worked half days until one night the pain was so bad we went to emergency room. He was a little confused but we thought it was from pain meds. The Er doctor dropped a bomb saying with liver cancer, ammonia builds up in the brain. Causes confusion, comas! Took 11 days to get pain under control and have hospice agree to let me take him home. He was so happy to be home, even if it was in a bed. He lasted 5 days. Mike did not pass easy. He fought until the end. I have many regrets on how things were handled and that I should have know and done more, been sweeter, listened better. I can’t change any of those things now.
I miss him everyday. I never wanted to be on my own at this age. We were supposed to grow old together. We were married for 39 years and together for 41.
I took care of my mother till the end (we lost her 4 years ago. I moved out to where they lived to help care for her) and am now doing the same for my father after he suffered 4 strokes In 3 months. Everyday I wish I could do more, I wish I could be a more patient daughter and caregiver. In the end I would have it no other way tho. All we can do is try our hardest and do the best we can do. My mother cared for my grandmother so I’ve never had any reservations about carrying for my parents, I’ve always felt it was the least I can do. Like I’ve said so many times, we want my father home not in a home plus there’s no way we could afford such a thing. I’ve had to quit my job to care for me father and we’ve had to give up so much but in the end all we need is a roof over or heads and each other until it’s his time to join so many others in the other side. Thank you for your story I appreciate it❤
Beautifully written …As i read your words ..it was as if much of it was mine. Funny ..its been close to two years now but feels like yesterday .. i can still imagine every vein on her hand .. every mark on her face . The way she would look at me with love and gratitude in her eyes .Gratitude that i had managed to keep my words that she would not be left alone to die . There were 7 of us , our spouses , and her much loved grandchildren, that shared the weeks with her before she passed. She was always so grateful for anything ..no matter how small that we did for her. It was such an honor to be there with her knowing that we were able to fulfill her wishes up till her last breathe . She deserved the best because she gave us that kind of love and service through our entire lives . At 85yrs old …her every day consisted of awaiting phone calls and visits from loved ones …still loved to laugh and spend time with all of us , up until those last coulle weeks when she became ill . She was one of the lucky ones .. she left this earth feeling loved …fulfilled & happy life on earth behind her. I really wish all seniors could have that during the end . Thank you for your story .. it gave me a chance to ponder over our experience of saying goodbye to our mother .
I helped my mom care for my dad in our home. I was going through a divorce, job change and was pregnant with my second son, so I moved home. I talked a lot with my dad but his terminal cancer took him at 63. We had 15 months to prepare for his death. I watched him suffer terribly, which made it easier to let go. Twenty eight years later we got my mom’s diagnosis of cancer…my heart broke. She spent so much time with me and my sons over the years, I never really thought about her being gone. She was 89, I made her a bedroom in my dining room because she couldn’t handle the stairs. I bathed her, talked to her, cooked for her and did everything I possibly could to keep her comfortable. She had taken such good care of my dad when he was sick, she deserved the same. I miss her terribly. We fought at times but they didn’t last. It’s the most loving thing you can do.
Thank you for this. I cared for my grandmother, dad & mom. I was 23 when my grand came to live with us, I came home from school & within a 3 year period dad was gone, grand was in a nursing home and my mom was gravely ill. I cared for mom for 15 yrs. I never heard her say my name in all that time but we had joy, love. I became a nurse in every sense but without the degree.
When you are caring for your loved ones you deal with doctors, nurses, lawyers,the government, & no you do not take care of yourself.
You get all kinds of comments from well meaning folks who for the most part have no idea what you are doing but are at the ready to tell you the shoulda, coulds,woulds of what you are doing. If you are lucky you have a few who stick with you till it is over.
The day my dad died, I had spoken to him that morning & by lunch I was getting the call he was gone. When we went to the funeral home, I just knew they had the wrong person. Only when they wheeled him out it was my dad. Eyes can play tricks as I thought I kept seeing him breathe. When Mom passed the same happened, we don’t want them to be gone. When Mom passed I felt like an orphan.
There is not a day goes by when I don’t think of her. It was such a spiritual experience taking care of her.she was only 56 when she became ill, I was 26. I don’t regret a minute of having the privilege of being her daughter & caring for her.
I looked at her face trying to memorize her face, the arch of her eyebrows, her cheek bones. I’d watch her breathe too, sing to her, touch her as I feared she could be gone any second. I learned not to be afraid of death. She had visitors too from the other side & I am grateful they came to be with her.
Although she didn’t speak a word we had our own communication skills.
I thank you again because your comments were spot on.