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”
Bless you and Your journey with your mother. I honestly feel very blessed I was able to share this process with my own mother. I was closer to her than any other being on this earth. I would not have survived her death if I could not share it with her!
My mother passed away a year ago this may2018.One of the hardest things I’ve ever had to do was agree with the doctor to make her comfortable. I watch for almost 24 hours as her heart rate Slowly decreased. Making sure I studied every inch of her face her nose her lips her hands just as you said, I did the same thing. Whispering in her ears “mom I love you!” ” it’s me, I love you mom thank you for being a great mom to me. ” I remember as your heart rate slowly came down to 40 my heart rate went up. I started praising the Lord that he my mother would be with him soon.38 35 29 22 18 as tears ran down my face, I praise the Lord that she was entering heaven. Then 0 and a flat line. I’ll never forget the day you left me MOM. I LOVE YOU FOREVER.
Thank you so much for this. So much of what you say in this article rings true with the passing of my mum. I can still hear the way my mum says my name as well…and I too worry that in time it won’t sound like her voice. My mum was an amazing woman whom I loved and adored. I always said that if I could be half the woman that she was,then I would be happy. It has been two and a half years since she passed and I still cry a little every day. I want to talk to her, or just listen to her sweet voice. She had such a gentle soul. People always told me it gets easier with time, I disagree, it’s gets different, never easier. Thank you for letting me share a little of my story. Michelle, the daughter of Susan who left us way too early.
As my Daddy passed in June 2019. His last words to me was. I love u too baby. As I had been standing by his bed. Saying over & over & over as I strokes his hair. I love u Daddy. Those words to me are more precious then all the wealth in the world to me. And better then any inheritance he could have left me. He drew all the strength to speak those words to me my two sisters & our spouses. Telling each of us one at a time & by name his love for us.
I just lost my mom Aug. 30 and my dad, June 7 this year. Thankfully, before my birthday Sept. 1.
I’ve been living 24-7 with them since Dec. 2017, while working. In March this year I quit my job to care for them.
Your story is so fresh and relevant to me, less than a week from losing mom. I have been cleaning house between planning the funeral with my siblings. I really don’t know how to act. The last week mom was alive, my sister and I gave her meds every two hours. I’m still exhausted.
Anyway, your article hit me between the eyes. Thank you.
The first time I helped take care of someone who was dying was 25 years ago, when I helped my husband & his sister card for his father at the end of his life. He was 86 years old & was ready to go to meet up with his wife in Heaven, so knowing he was ready was a big help. We made sure there was always 2 of us in the room with him when his time got close, so there wouldn’t be just one of us when he took his last breath. We all felt we did a good job meeting his needs & appreciated the help we got from Hospice.
Nine years ago I was by myself with my Mother when she took her last breath. After her 3rd cancer diagnosis in 4 years, I left my job to move in with her & care for her. I was lucky to have a supportive husband & we had saved for me being unemployed, as I was always her caregiver. Yes, there were some difficult times during this, but I will always treasure that time with her. I felt that it was my job to help her get to the other side.
Because we knew she didn’t have long to live, I rented a huge house on the beach for all of us to gather in, and she died 3-1/2 weeks after we left that house. Nine years later we still talk about how bonding & magical that week at our “beach mansion” was, as we all sat around reminiscing. We had us grown kids, grandkids, etc in & out for various lengths of days. We were open about her impending death, so even tho it was August I had a “holiday dinner” with turkey, ham & the fixins for 18 people, with my sister even playing Christmas carols on the piano.
Each family & death experience is different, so I think we need to accept that we do the best we can at any given time, and not look back with “should have, could have or would have”. Even tho my Mom & I had our differences during our life together & during her time of dying, I know that she loved me & appreciated my help thru those days.
Thank you for this beautiful article and I must have needed to read it, because I found comfort and understanding in your written words. At 43 I lost my father to a quick diagnosis of Cancer. At 40 I lost my mother to a long battle with Cancer for 12 years (many of those years she was full of life, worked full time, and lived each day to it’s fullest). The finality of it all to be without parents and to watch life end for the 2 most amazing mentors in your world was and still is the hardest thing I have done. I pray a lot to them, and call upon them for guidance and wisdom. In the back of mind I still can’t stop the final days or moments of their time here on earth. Could I have done more? Should I have said something, were words left unspoken? Did I come through with their final wishes of funeral and burial? Are they proud of me? I am the baby of the family, and always looking for affirmations and kudos and nothing is like having that blessing of joy and “atta boys” from your parents. My mom was my best friend/supporter and I always was Daddy’s girl. Now, I take the place as a 40-something woman with two boys 19/21 and a wonderful husband of 24 years – I know I now must lead like my parents did. Sometimes I still want to be the little girl who knew nothing of death, but seeing what I have seen has changed me forever. I do feel more empowered to use the knowledge and journey as a stepping stone of experience of life and death for myself and to help my family and children.
Thanks for sharing this. My mother’s last words to me were “ I would have preferred you being at the hospital with me instead of cleaning my house for my home coming”. She had been in the hospital for a month and was to come home on Sunday. No one was expecting her to die. I thought I was serving her by cleaning her house. She died in her sleep Sunday night. I felt like I could never please her. Not in life and not in death. Everyone else seemed to adore her. My daughter named one of her daughters after her, yet I have lived with guilt and some resentment. In the last few years I have chosen to forgive her for all the disappointments she put on me. I am hoping my daughter can do the same, although I have tried to work very hard not to be like my mother. V
My father passed away on Dec. 22, 2018. We knew he was dying. That didn’t help much. He had an infection in his heart and kidney failure. He slowly stopped eating. He asked me to be honest with him when he asked me if he was dying. I was. I told him that he was under Hospice care and was dying of the heart infection and kidney failure. He totally accepted this as he had been ready to die for a year; sometimes praying for death. He turned 92 on the 19th of Dec. We had a pizza and wings dinner for him as he loved that meal. The family stayed with him most of the time (7 children) On the night he died he had been resting most of the evening. Everyone was going home as they felt it wasn’t time yet. I didn’t have a good feeling so I stayed. Mom went to sleep and I sat by dad’s bed holding his hand. I just watched him breathe and noted there were small changes at times. It was raining out- a thunderstorm. Just before 3 AM there was a HUGE clap of thunder. I looked at my dad and he did not seem to be breathing any more. I told him that that was certainly a grand entrance into Heaven. I called for the nurse at the Assisted Living facility they lived at and his death was confirmed. I woke up mom and told her and made the calls to my siblings.
After that mom ; who had lost her short term memory after a stroke 6 months earlier, constantly asked where dad was. We explained over and over. She didn’t remember his death or funeral.Little by little she understood but still confirmed. She missed him so much. They had been married 69 years and had really never been apart. Mom shared her favorite stories of how they met, had children and what a wonderful husband and father he was. We heard those stories so many times. We would roll our eyes or laugh when she started telling them. What I would give to hear them one more time. She was kept active at the Assisted Living facility. Even though she was legally blind she painted, played BINGO and participated in most activities. She attended most religious services as she felt closet to dad when in Church. Seven months after dad passed I stopped to visit her. I discovered an ambulance in the bay. It was for mom. She had been vomiting the night before and again in the AM. She was taken to the hospital ER and joked along the way. Once she was admitted testing began and her situation changed. She was in a lot of pain in her lower back. She ended up with a kidney stone and infection, pneumonia and sepsis. At one point she told one of my sisters and myself that maybe she would see our dad that day. We told he not yet. Well she knew more than we thought. She passed away 2 days later. We were totally caught off guard. Still seems like it can’t be real. I truly believe dad called her.
I was caregiver for both my mom and dad. I could not bear the thought of them in a nursing facility so I lived with them 6 months. My father passed away December two days before Christmas, my mom passed away the following April. My longing to touch them once more, to tell them how much I love them, to tell them how much I appreciate them, to wrap my arms around them and hold them tight, I feel will never go away. As time goes on I’m missing them more and more and the tears come unexpectedly and uncontrollably. I was alone with my dad when he passed. My cousin was with me when my mom passed. I thank God that he allowed me the strength to care for my parents, that he gave me the strength to sit alone, by my dad’s side and watch him take his last breath. And that his timing was so perfect in having my niece make last minute plans to come from her home in England to spend time with my mom. She arrived on a Wed, my mom passed away unexpectedly the following Monday with her niece whom she dearly loved and myself by her side. In times of grief I also have times of praise because I know God was present and made things right.