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 too watched my Mom pass. She was so young. She was 57, and didn’t have nearly enough time with her grandchildren. I had to be the one tell her that her only son had a heart attack and didn’t make it. She died only 7 months later. He lungs had failed, she wasn’t a candidate for a transplant because her heart was too weak. Just a few months before my twin and only brother passed mother had a stroke that weakened her heart. My three sisters wanted to keep mom on the vent another 24 hours but she was suffering. We promised we wouldn’t let her suffer. She lived less than 3 hours after my best friend of 20 years and the respiratory therapist, removed the vent! She was ready. I ask her if she was tired she shook her head yes. I ask her if she was ready to meet Jesus again she shook her head but the look in her eyes told me she was more than her movements. I’m still in therapy. Losing my twin and mother in less than 8 months is something I don’t see “getting over “ any time soon. It’s been 2 years for my brother and one for mommy. Love them hard and with all that you have. Let them call 700 times a day and listen to the stories over and over again.  Look at them and take in their scent. I haven’t had a dream of my brother still but would love to. I woke myself once begging my mommy not to go. Love with all that you have in you!  Be sure to tell them you love them. Be happy and angry and laugh and cry. Be TOGETHER! Be FULLY ready to let got. NEVER have regret. Never leave things unsaid EVER!
Nothing can EVER prepare you for a loved ones death. I was my mother’s caregiver and actually turned my dining room into her room with in 30 minutes of her coming from hospital to my home ( her choice and my pleasure) I was at her side 24/7 unless she had me run an errand for her but had sister or my children stay at her side while I was gone.
This is so hard to write about , my mom has been gone since February 10, 2010 then October 1, 2010 my only sibling past away without any warning so I’ve really not been able to really fully grieve either one , they were my best friends.
My mother had a heart valve replacement which didn’t take. She declined in three short weeks never leaving the hospital.  After two weeks she had given up and was ready to die. My sister and I stayed by her side taking turns. It was during one of my stays that she had a quick procedure that put her into distress. She had signed that she wanted no action taken if she was to die. I held her hand and told her she could go.  She dropped my hand, raised both arms to heaven then died.  It’s been 4 years and I see everything just like it happened 4 minutes ago.Â
I too took care of my mom for 13
Months in my home before she passed in Oct 2018. I can relate to everything you said. Her being in places , and purring my self there acting like nothing was wrong. My family learned to do the same. We were never close. My first husband passed in January 2014. He was an alcoholic and I was a young widow at 53. We began a relationship then. But the bond we had when she moved in, I can’t put into words. Since she has gone, she comes to me happy and dancing and I know she is at peace and finally with my dad. I smile, mostly when I think of her now, but there are still
those moments that I cry. Or I forget and I want to pick up the phone to tell her something . Thanks for sharing your story . I know it well.Â
This was so beautiful. I watched my mom pass 21 years. Seems like yesterday.
Watching my Mother die was the hardest thing I have ever done, but I wouldn’t trade it for the world. I was there when she took her last breath and my voice was the last voice she heard. As weird as this sounds, I will treasure it forever. I don’t have any regrets and I know that I was there to take care of her in her last days. I can rest knowing she is not in pain anymore and is with my Father. I want to say if you still have your Parents, visit them and tell them how much you love them and give them the biggest hugs you can give. One day you won’t be able to.
The story is very familiar and still very fresh in my mind. You spoke it well. Â If I could add anything at all, I would write about how other members of the family would give their opinions on her end of life. Â I had an aunt that felt she needed a feeding tube…
I cried reading your story, I did hospice with both my parents last year. First my mother who had brain cancer,a fast cancer, then my father he had a Afib heart and had congestive heart failure. My boyfriend of 25 yrs, he was 56, I found passed away the day before my father died of congestive heart failure as well. I could not believe all I went thru. I had been the caregiver for years to my parents, uncle, friends. All you talked about, I experienced. My father was a quiet man, never really said things about anyone ever, he was a good father. One night he said to me “your mother & I are so very proud of you and I want you to know that”! It was the last real thing he said to me,and I cried because he never spoke his feelings. I asked my sisters if he said anything to them and they said no. I experienced many unseen things as well that I knew they were really experiencing. After they have now passed, I wonder when will I go…..I find myself making arrangements for my death to come so my son’s burden will be lightened( I’m only 58). All you talked about, i have been in those moments and had those thoughts. I have been forever changed since they all left to live again. I am alone and have no regrets because i spent years being there for my parents,spending time doing their yard work, taking them to doctor appointments, hospitals, ect., my 2 sisters lived elsewhere,living their lives,taking vacations,going with friends out. I did not, I sacrificed all to be with and there for my parents, and it made letting them go, and saying goodbye, the most painful heartache I have ever endured! Thank you for sharing your pain and story, I’m sure you will touch many with the wisdom you shared, God Bless you!!!
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My aunt and I took care of her mother ( my grandmother) for over 8 years. I will be forever grateful for the time we all spent together. My Gran sometimes would recite a poem just out of the blue or burst into song. She loved her cryptograms and Jeopardy. We had some rough times and sometimes tempers would flare or feelings would be hurt, but overall we all got along well. She’s been gone a year now and the adjustment has been difficult. I will miss her forever.
Thank you for this sharing. I cared for my mother 27 years, as each year passed, I saw and observed changes in her that often took me to moments of reflecting how she must be feeling, that no longer could do the things she used to do. At the beginning of the twenty seven years of caring, Dad had his health fail almost suddenly with strokes to surviving but paralyzed on his whole left side of his body, at the very same time, was also diagnosed with bone cancer. His will and determination and especially faith took him to a battle and overcame his paralyzed state and to the surprised med professionals, he walked. Radiaton weakened his bones, and caused him to walked slower. He fell, and doctors had told us that blood clots in his brain could develop again after his brain surgery to remove half grape sized clots on each side. Dad would loose his balance, but because of his determination, I did every act to give him his dignity, and would blame myself that I was the one that lost my balance while I held him up as we walked together. As he would be in radiation therapy, I would rush mom to her doctor’s appointment. Again, trying so hard to keep my head and pretend it was all ok so they wouldn’t see my stress. They were the most patient patients, I saw they were more worried about me. I had two kiddos in school I still had to keep time for them. My husband had had a hip replacement and again, I thank God for such a wonderful man, but, I felt bad I couldn’t completely care for him as he helped himself only to help me out. He helped me with kids to help them with homework so they could pitch in with chores. Great kids, after school, they sure helped. Three short months, Right before Dad passed away, he layed his hand on my forehead and prayed for me, sang a love song to mom, and sang Ave Maria as he lifted his hand towards the ceiling. And, his message to me included me taking care of my heart and health. Mom had been on a walker barely getting around. My husband promised dad that we would be taking care of mom. Dad sighed with relief. I had brought my parents to my then, tiny home to keep a 24 hour care. After dad passed, I still had mom’s health to help her with. Twenty seven years of learning healthcare for them also included many emotional reckoning moments I had to continue to keep positive so that mom could be comfortable and secure that we had her there to love her. As years passed, I had to fight off tears in truths that mom was only here as long as God wanted her here, not by my choice. It was so hard to fight off tears especially during bouts of life threatening hospital stays and emergencies. My husband had become more than a son in law, he was a true son to her, and my hero. Mom’s funny moments began to change to somewhat sad, emotional moments. I recorded her when she would make me laugh, to her moments of concern, then to moments of sadness. All those are still hard to review, it’s been two years that she left us to meet daddy. I remember a movie of someone having lost a loved one and years later still unable to move their belongings. Well, now I know what it is like. The room we made Mom’s and at first shared with my daughter still remains as mom left it. Just recent, I make an effort to step at the doorway as I would peek in on her to check if she was sleeping ok. Twenty seven years of love, words cannot totally paint all we went through. I was told at her service, and such comforts me: That by taking care of my mom, so as I did for Jesus. Many emotions went through me, but never felt anger.