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 diagnosed with Lung Cancer in November of 2014. She passed away on December 31, 2014. I remember when the Chaplain came from the hospice group, she asked my Mom what did she want and my Mom told her she wanted a fast and peaceful death. That’s all she wanted. She had been under a Drs. care since she was a little girl so she’s been in a lot of pain most of her life. Her cancer had spread throughout her body so all she had was radiation to shrink the tumor in her lung. 21 days of this and it helped her greatly. I was so thankful for that. She passed on her own terms cause the nurse put a morphine pump on her arm. She said she would gradually drift off. Not being able to swallow or talk at all. This was like 10:00pm. No sooner than the nurse left she was setting up on the side of the bed talking with all of her 5 children and their spouses and grandchildren. I took care of her mostly by myself since everyone else worked. She wanted each of her children to set by her one by one and chat with her. I was first. She told me how much she loved me and how much she appreciated me for everything that I had done for her. I have a picture of me with my arm around her that someone took. When she told me this it felt like a 100lbs was lifted off my shoulders and I don’t know why but I cried there with her. She spoke to the other 4 siblings all the while drinking a 2 liter of Pepsi shen she was supposed to not be able to do anything. She even got up and used the potty. At one point as she was getting closer she said look at all the Angels, their wing are so pretty. She went to bed about 5:30 and passed away about 8:28am that morning. It was a very peaceful and fast. It will be 5 years this December and I miss her so very much. I’m crying as I write this but I know she’s no longer in pain and she’s in a better place.
My Daddy had also passed away in 2006 so I was the only one she saw the most of at any given time. So I was at a total loss when my Mom passed away she was my world.
From the time my mother was diagnosed with terminal cancer, until she breathed her last, 7 months later, she was never alone. My sisters and I took turns staying with her, cooking, cleaning, taking her for chemo and radiation, doing whatever she needed or wanted us to do. We were all there with her the day she left us. That was almost 12 years ago. For the longest time when I thought of her, all I could see what the way she looked as she struggled for those last breaths. I couldn’t remember the sound of her voice, her laugh or her sweet smile…just that awful look in her eyes as she gasped for air. Then one day… a year or so after she died, I caught myself reaching for the phone to call her and suddenly I remembered her voice, I could see her smiling, laughing, standing in the kitchen making biscuits. I’m eagerly looking forward to the day I can see her again, face to face. Thanks for sharing your story and giving all of us an opportunity to share ours.
Thank you for writing this. I was with my Mom to the end. For the past few years I have taken care of her. I cherished the time I had with her. As she went between both worlds she talked about her Mom, sister and her favorite movie star. They visited for the last month before her passing. We would giggle and talk about times with them. I recorded her several times before her passing. I listen to her talk about her favorite memories, family and videoed her singing with one of her great grandchildren. It was so special. I had the same thoughts about my own passing and whether my own children would be with me. Her body gave up on her but she is still here in spirit and that is very comforting.
I too fully understand & feel every word you shared. My Mom passed away 2 years ago. I was her caregiver for the last 5 yrs. She had Parkinson’s. You can never know how much your mind & heart can withstand until you have to experience the decline & final journey of your mom or any loved one.
I’m not an only child but during the times my Mom needed us most I was the only one by her side.
One of the hardest days next to her death was when her Drs told us she could never go back to her beautiful home unless she had 24hr care. I still remember having to go back to her home & packing ALL her things & trying to decide what to keep & what to let go
That truly in a since was like me acknowledging this was the beginning of letting her go & saying goodbye.
My heart broke a thousand times over in those few days. I then had to move her to an assistant living facility
I did my best to reconstruct that 1 room to make it almost identical to her previous livingroom & bedroom using as much of her own furnishings they could allow me to use.
My mom started having sun downing episodes
These would typically start around 6 or 7pm
She would think they had left her somewhere in the facility alone. She would call me hysterically begging me to return to the facility to find her & take her back to her room . Thankfully I only lived 15min away, I would return & she would be sitting in her chair in her room yet unable to visually recognize where she was. My heart would sink as I would walk in and see the fear on her face & tears in her eyes.
We were between a rock & a hard space as her Parkinson’s progressed they would have to give her the highest dose of her Parkinson’s med so she would be able to move & swallow this would cause extreme hallucinations, then decrease the meds to give her a break from the hallucinations but then her tiny little body would suffer. This went on for almost 1yr.
My dear mom was a retired RN and knew & understood everything that was happening
She would tell me everyday: I’m getting so very tired of fighting this.
The last 2 weeks of her life I never left her for longer than 1 hr, only to come home shower change clothes & if she had mentioned anything what so ever she wanted stop & get it and return to her.
At the end of the first week she no longer could feed herself . As much as she hated it, she would let me feed her..she would say; did you ever think we would come to this…where your like the mom to me & I’m the child
I would just smile and tell her it’s okay..now I can tell you that you have to finish your food or no TV, she would smile back & say..you win. I cherish every moment I had with her. Even those last days when she could no longer talk,but she would smile at my antics of trying to hold it together for her & myself.
The last 2 days were so difficult. See my Dad had passed away 14yrs prior & I too helped my mom take care of him as he passed away from pancreatic cancer. From the day my dad died until my mom could still speak all she wanted was to be with him again & would tell me I just can’t wait to see your dad.
As I sat next to her holding her hand & watching each breath she took, she just seemed like she wasn’t letting go& seemed uncomfortable. Aside from my dad& her family my mom loved 2 more things ” snow, she would sit & watch the snow silently falling & sometimes open the window & say..smell that..the smell of fresh fallen snow..the second thing..Elvis. So the last 6 or so hours with my mom it just happened that about 9pm that night it had started to snow, so I opened the window slightly & the blinds, put her favorite Elvis CD in sat down, held her fragile hand, stroked her hair. Then I told her ” Mom, its snowing & I have the window opened, it smells so nice, listen, Elvis is singing softly your favorite songs and Dad is on his way to take you home
Her labored breathing finally became less stressful & she peacefully passed away a couple hrs later
I learned so much about her,about me,about life & death. I miss her voice, her face& her smile.
I also learned alot of things I thought was important truly were not. I think we also learn patience maybe not always as soon as we should have, but we do learn.
My mom use to tell me; you will miss me when I’m gone. No truer words were ever spoken to me. I miss her everyday. I hope we all that have had to travel this path have learned from it and make changes to our own lives & always be kind & thoughtful.
Thank you for sharing. I lost my mom may 2018 and it hurts everyday. I miss her so much and keep thinking I should have done more and been there more for her.
It was my “baby” sister, 5 years younger, that I sat with. Friends and acquaintances would be there for visiting hours as she declined from colon cancer. I would grab a few hours sleep while she wasn’t alone, then go back to be with her when everyone else was gone. At one point she started crying and repeating “I’m sorry, I’m so sorry”, I tried to comfort her, wondering what she could be so sorry about. Finally she said “please, just hold me” so I climbed onto the bed (not easy in those narrow hospital beds) and held her until she fell asleep. That afternoon they decided to move her into hospice care. I tried to object, offering to pay for additional time in the hospital, I could easily afford it. I was overridden and watched as she was removed, crying, to be taken to hospice. She died the next day. I have always regretted that I didn’t insist she be allowed to remain, where she wished to be, for the additional day.
I lost my mom a week ago tomorrow and this past week has been the most difficult and heart breaking thing I’ve been through. She was a young hard working 55 year old woman who fought a hard cancer battle for 2 years, but ultimately lost the war. My mom’s cancer started spreading like a wildfire in the recent months as the doctors could no longer help her and she too would soon start drifting from this world. Within a matter of a month, she went from being fully functional and coherent to not being able to walk, not able to eat, not able to take care of herself , unable to hold a conversation and being in unbearable pain. She went downhill so fast that I was barely even able to comprehend what was happening, but deep down I did because I’ve seen it many of times in my profession, but never in my own family. I knew what to expect and what was coming, but I didn’t think it was going to be so rapid. All I knew is that I was going to be there for my mother and I didn’t want her to suffer. I sat by her side as often as I could and watched her drift in and out of consciousnesses, I watched her face grimace from the excruciating pain that was radiating throughout her body and I watched her transform into someone that I didn’t recognize. Her face was swollen from all of the medication that quickly thinned out due to not eating in weeks, her skin starting turning a pale shade of gray as death was setting in and her her eyes had grown wary and tired. I watched endlessly as she was being prepared to leave this earth, but I wasn’t ready to let her go. I cried and I prayed, I prayed and I cried a little harder because I knew soon, my mom was going to gone and we would be left to pick up the pieces. I had to be strong for her, for myself and for everyone else that would be mourning her loss. Some moments it doesn’t seem real and I wonder if I am dreaming but then I’m brought back to painful reminder that it is very much a reality. They say time heals pain, but does it really or does it just bandage the hurt? My heart goes out to anyone grieving the loss of a parent or a loved one, because it is tragic and devstating.
I am sobbing as I read this. I, too, watched my ever so loved Mama die. I remember the last couple months she was under hospice care at home.
She wasn’t her real self most of the time. She wondered how I got her hospital room look like her bedroom when, in fact, she was home. She saw people on walls. She talked to the tv as if she knew personally knew the characters on the shows.
I walked in on her one day while she was talking to the wall in front of her. When I asked who she was talking to, she looked at me like I was crazy and asked if I don’t see the 6 angels with Jesus on top of her dresser. So, I just nodded my head. I was convinced she really was seeing them. There were many incidents like these.
One day she said her sisters (all deceased) were there earlier and just left to go get some lunch but they were coming back to take her. Another day she said my dad is coming to pick her up. That was the time I knew she was dying soon with all her loved ones coming to get her along with the angels and Jesus. What an entourage to heaven.
Ad then on a Wednesday afternoon I noticed moving around like she was very uncomfortable. I noticed she was struggling to breathe so I called hospice and they instructed me on what to do until a nurse comes. So I did as instructed. I called a neighbor who is a retired nurse. She helped me give Mama oxygen and use a nebulizer as I administered the morphine to help her breathing. When the hospice nurse came, she informed me of what I really suspected. My Mama was dying. The nurse left me and my neighbor to do what there was to be done. As I couldn’t stand watching Mama struggling, I asked her if she wants to join my dad and she said yes. I told her to go ahead and go to Dad. I gave her permission. Yes, I gave her permission to die.
The Thursday following was such so awful. I continued to give her morphine to help her breathe. I got very little help from a hospice her who was on the phone most of the time. Mama started to vomit bile. Nurse showed me how to suction Mama’s mouth to prevent aspiration. Then the nurse left. I am so thankful a cousin who is a nurse came over and helped me. And then Mama’s youngest sister came. We watched my mom as she died. She looked around, i think she was looking for my brothers who were on their way from airport. Then she looked at so lovingly and shut her eyes. The time was 3:25 pm. My life has been a struggle since. My brothers arrived 15 minutes later. By then there were others around. I asked everyone to please leave me and my brothers to be alone with our mom.
Two hours later, they took her away in a body bag which I wasn’t allowed to witness.
That was Thursday evening, Nov. 9, 2017, almost 2 years ago.
I have been in therapy ever since. What I want the most is to be reunited with Mama. I’m in so much pain.
I lived your story as well. My mom fought ovarian cancer for 6 years. One round of chemo was every Wednesday for 6 months. She did another round 2 years later. My daughter got engaged on April 30, 2016. My mom was going to be at that wedding no matter what! That July she ended up going by ambulance to the ER in excruciating pain in her back. After a ct scan, the pain was caused by a growth on her spine. Her oncologist suggested radiation. My mom’s first question was, “will I make it to my granddaughters wedding?”. So she did 16 days of radiation. I was with her thru every threatment. Fortunately, she lived next door and I was able to give her the care she needed. I loved every minute taking care of her, she was an incredible mother and I miss her terribly still. My daughter got married on June 24, 2017. She made it!!! She looked so pretty, no one could believe how sick she was. My mom passed away 6 weeks later. Over those 6 weeks I gave her constant care at her house before and after work. We ended up moving her into my house for her last 3 weeks. During those 3 weeks I was fortunate to work 4 hour days and had good friends that stayed with her while I did work. Your story hit me so much, especially the holding hands. I held her hand all the time. I made it a point to get in her face and rub our noses together followed by “I love you”. I did watch her and listen to her say things she could see. My house had become filled with her friends and my friends. It was like a living wake. She had gotten agitated and I asked if no one would come over for that day. It was Wednesday, August 9th. She was finally settled down and sleeping comfortably. I say in the chair next to her and wrote her eulogy. I had hymns playing on my laptop and could tell she was at peace. I actually got in her bed and just layed there hugging her. All of a sudden she whispered “Irish Rose”. My dad always called her Irish and her middle name was Rose. I knew then, she was ready. That night I tried so hard to stay awake. I was up until 4 am and just layed down in the bed next to her. I must have fallen asleep because my husband came in at 6 and woke me to tell me she had passed. I was devastated I wasn’t there holding her hand when she passed. Dying is a process, sort of like being born. Funny how the person who brought me into this world and took care of me for so long was now needing me to help her thru the process of dying. It was such an honor and privilege to take care of her. A day doesn’t go by that she isn’t in my heart and thoughts. I miss her so very much but know we will be together again. Thank you for sharing your story.
My mom passed away June 17th of this year. I thought that I would be ready, as I she had dementia and had been suffering for at least 7 years. Sometimes she was so confused, and I was the only living child left. It had been her and I since I was 13 years old. Dad had numerous affairs on her over the years, and he was a terrible husband and dad. I had to go to court with her when the divorce became final, and I sat out in the hall waiting for her to come out. When she came out, I could tell that she had been crying, and I was worried because she didn’t have a job yet or anything, because she had only taken care of us 3 kids. ( Two brothers have since passed.) I looked at her and said “Mom, what are we going to do now?” My sweet mom said, “We are going to have fun!” And she did help make the rest of my growing up years fun! She had several boyfriends but never remarried. She had been in a care home for over 6 years. I always say that everything I have inside me that is good came from her! She was the best mom for me. I had a hard time after she passed. A Hospice counselor called me for two months after she passed, and I poured out my heart to her. She asked if I wanted to meet her in person and we agreed to meet at a retirement home close to where I live, because she had a class to teach there, but she said that nobody ever came. I showed up and waited for her for 20 minutes, she didn’t show up. Something happened inside me, and I cried most of the way home until I pulled over in a park and called my doctor. I talked to a nurse and she made me feel better, and they got me in the next day. He put me on a low dose antidepressant, and I’m still taking it. It’s helped a lot. I still miss her, even though she had dementia and she didn’t even remember my name. Thank you for letting me share!