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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802 comments on “Caring for a Dying Parent In Their Last Days – a Personal Story”
Billie Jean Lawson (1940 to 2021) wanted an obituary that was unlike those you usually read in the paper or online. We hope we have done her proud.
Billie was a bobcat. Her life began in Bristol, Tennessee. She was a fierce presence, an iron-willed mountain woman. She was known for holding her ground any time she felt she was right or if she believed someone else needed a champion.
A friend commented that Billie was a bobcat and, in many ways, she was. Billie was solitary and territorial. She was intensely protective of her clan. She would go toe-to-toe with anyone to protect her daughters Kim (Jim) Cortez and Cindy (Ben) Kluck-Nygren, her grandchildren James Keith Cortez, Kristine (Alex) Tracy, and Riley (Devan) Nygren-Scott, her late husband Werner Lawson, and her former husband and friend of nearly 70 years, Stanley Kluck. She was just as protective of her packages of mini powdered doughnuts.
While Billie’s diminutive stature may have fooled some into thinking she could be easily swayed, they quickly learned otherwise. She spoke her mind freely, loudly, and with conviction. She didn’t hesitate to let you know where you stood. But Billie would also stand up with you – or for you – if she believed you needed her protection. Billie embraced life and lived on her own terms. Her presence commanded the attention of everyone in the room. There was no experience she wouldn’t try and anyone who encountered her left with a story.
While living in Chicago, her pastimes included taking her grandchildren on day trips throughout the city, enjoying boxed wine and cigars on her patio with friends, traveling through Europe, Africa, and the Middle East, and making connections everywhere she went. Once she moved to Arizona, she and her husband crossed the border into Nogales to dance and drink margaritas at local restaurants. Her friends in her later years included some of the local firefighters who would stop by to drop off hamburgers and chat.
Throughout her life, Billie took great pride in her strength and stubbornness. She refused to allow illness to defeat her or deter her from living life. To the surprise of no one who knew her, Billie chose to shuffle off this mortal coil in her own time. Her daughters, sons-in-law, and grandson were on hand for the final steps of her journey.
Billie will be remembered by all who have been in her company.
Public services will be announced at a later date. The family asks anyone wishing to celebrate Billie’s memory to consider supporting (non-bobcat) animals by donating to The Animal League of Green Valley, where Billie had volunteered for many years. The Animal League of Green Valley, attn: Jane Vazquez, 1600 W. Duval Mine Road, Green Valley, AZ 85614 520-625-3170.
2 years ago I lost my dad.it was and is the most painful thing to go through.I felt so helpless that there was nothing I could do for him.but in a way I did something for him.I was there,holding his hand and told him thanks for giving a wonderful life and memories.I was able to say goodbye to him.I will never get over losing my dad ,the greatest man I know.
I cared for my Mom until she died
My dad had stage 4 Non-Hodgkin Lymphoma & was doing so well until he developed an infection, he knew he was dying but he never let us know of the pain he was experiencing & he made a list of things he wanted to happen before & after he died. He was transported from Cayman Islands To Jamaica on the 7th of July 2021 & was in the hospital. My siblings & I took turns visiting him until the Saturday morning i went to visit him & he was back & forth as well, some of the time he knew it was me & then another time he had no idea who I was. I sat there with him, holding his hand, comforting him, wiping him up just to make him feel comfortable until my sister & stepmother came & we held his hands while he took his last breath. I’ll never get over the fact that my dad died leaving me so soon but i’m glad that I was able to hold his hand while he transitioned. I can definitely relay to this post as we went through the same thing with my dad. Sorry for your loss
I lost my Dad when I was 20 and 5 months pregnant, I thought I wouldnt be able to go on but I did knowing he wasnt in any pain. But when I lots my Mom at the beginning of this month my whole world was turned upside down and I am struggling so to keep things together as it is a 50/50 problem. She and I had a terrible fight about 35 yrs ago and when she left my house throwing things at me she said ” I no longer have a daughter named Louise” with a few choice other statements and non lady like words. So I dug my heels in and stayed away, but with it she played games so that only her special kids , there are 5 of us me being the oldest, got to know the new rules and who got along and who she liked or didnt like at the moment. I worked hard on being strong for my children and not to become the same type of person. As I got older and heard of her medical issues I tried hard to make amends but I had siblings in the way of that process. To make a long story short when she was taken to the hospital ready to pass on my siblings would not allow me to visit her even for 10 minutes, then they had her taken to a funeral home in my city but no information was released until the obituary came out and they did not even mention me or my children/grandchildren. It was like I never existed. So if you can make amends have a tea party or just say i love you … DO IT …. you never know when you will ever have the chance to do it again….
My dear dad passed 10 days ago and I was so blessed to be with him as he took his last breath. He struggled with complications of COVID pneumonia and other health issues. Dad just grew so weary of fighting illness and pain. He took my hand and gently kissed it then took a final breath. I believe he was sending all his love to mom and to all his seven children through that kiss and I was to bring it to them.
We are all grieving yet celebrating the life of our remarkable dad. Yes, there are regrets, unhappiness, hurts associated with a life that spanned 94 years but as we help each other to work through those feelings, we can’t help but focus on the good. And there was so much good!
My goal is to listen and empathize as my mom and siblings share their personal relationship with dad.
All our experiences contribute to the man we all called Dad/Pa. The imperfect yet perfect human!
Thank you for this….you said so many of the things I had running through my head. Boy did I cry reading this….My thoughts are with all of you as losing parents is one of the hardest challenges. For me, one of the most difficult things I’ve faced in my life thus far – they were my everything. I still doubt myself and think I could have been a better daughter, been kinder, so many things. I hope I can forgive myself one day and most importantly I hope my parents can too.
The doctors said she needed a feeding tube and needed to be in a nursing home. My father broke down, he cried and cried. I cried because I knew she would not want to be in a nursing home. So we talked with the doctors and arranged for bring her home, no artificial feeding and let her pass away in peace. All the doctors agreed with this. I had talked to my Mom when my Gram was sick and she told me if she was ever bad enough that she needed to go to a nursing home then I should put a pillow over her face. So I knew what I have to do. She came home with hospice and I took a leave of absence from work and stayed with her 24 hours a day. She was so happy when she go home even though she had no idea where she was, but she knew my father and felt safe. I had to bath her, change diapers and make her as comfortable as possible with medications. Two weeks later she went peacefully with a house full of loved ones around her.
After my Mom passed away my Dad was in his early 80’s and he was not thriving without her, so
I brought him to live with me. It was a wonderful time, he was a kind, loving, funny man and I cherished those time with him. He was with me for 4 years, when he couldn’t stay alone there were family members who came and stayed with him while I was at work. Then one day he had a small stroke, I call an ambulance and he was taken to the hospital. He was unconscious so I stayed with him the night. The next morning he woke up, we chatted and I teased him like I always did. I went home to change and when I got back he had another small stroke and was unconscious again. The doctor then took my brother and I aside and she told me I could no longer care for him, he would need to go to a nursing home or we could stop his meds and he could go to an inpatient Hospice and I could be with him the whole time, anyone could stay there. So he went to the Hospice and my brother and I stayed with him 24 hours a day. I sat in a chair next to him every night and held his hand. Then on the 6th night at 5:45am I told him I was going to lay on the couch and I would be back in a bit. I woke up 15 minutes later and looked over at him and knew he had passed away.
All I can say is do everything you can for those you love, you will never regret it. I have wonderful memories of those times, they were peaceful and loving. I allowed my parents to pass on with love and dignity.
I took care of several family members starting with my Grandmother. When she was diagnosed with colon cancer my husband and I brought her to live with us. She lasted 4 years and had 3 more surgeries. I had 3 young children at the time and they loved her so much. After her last surgery the surgeon told us the cancer had spread to all her organs and that she didn’t have much time left. We got a hospital bed, contacted hospice and brought her home from the hospital. I cleaned her incision, cleaned her colostomy bag, gave her medication, monitored her oxygen and changed IV bags. I never thought I would be able to do all of that, but I loved her so much I wanted her with me. She died peacefully a week later at home with her loved ones around her.
My Mom started to have memory problems when she was in her later 50’s and by the time she was 62 she was diagnosed with Alzheimer’s disease. The disease was slow but steady and when she was 73 we knew that we had to bring in help for my Dad. I was divorced by then and working full time and could not take time off. We found a wonderful woman who came early in the morning and left after dinner. I would stop by the house on my way home. Then my Mom fell and broke her femur bone. Her doctor said that they had to do surgery or she would be in excruciating pain. She had the surgery and then she no longer knew any of us except my Dad and refused to eat. (continued below)
My mom died in 2020 when the Covid was closing nursing homes. They were supposed to open on 10/1/2020 and the admin said I couldn’t see her. So hospice stepped in and said you need to let her in. They put her in a room by a door where I could walk in put a mask and gown on 10/3 I went to see her in person since March 5th. My mom looked up and said “I’ve been waiting for you”. I cried she looked and told me to stop she was going to see Papa! She was semi comatose by the end of the day. So for 6 days I sat by her bed. Snd on Friday hospice told me I had to go home. That my mom was at s point she should of passed. So I did and she passed at 1:15 10/10/2020. Still having a hard times a year later. I can relate to this story except for keeping her at home. Sorry for your loss
I came into this world with my father, reaching through the bars on my crib, holding my tiny had until we both fell a sleep. If I cried out his hand would take mine and hold it until I was calm and back to sleep. I was privileged to sit by his bedside the last three days and nights of his holding his frail hand and speaking softly to him. When I would need a short bathroom break or to eat a few bites, a nurse would take his hand and sit in my chair or my mother would on her visits. If he called my name they would answer for me or my mom if he was calling out for her. When death film covered his eyes he panicked and cried out…”Sissy, I can’t see, I can’t see, what’s happening?” I explained it was the film that God placed there just before death to prepare them fir his journey to heaven. That it was ok, when his sight returned it would be perfect 20/20 and he would see Jesus and be in Heaven. That brought him peace and he settled down knowing he would be “home” soon. When he began to make the deep death rattling sounds I held his hand a while abd thanked God his struggles with leukemia and his bad heart would soon be over….then I rang fir the nurse. I stepped outside to the nurse station and called for the family who had gathered at home to come. For me it was a sweet privilege that I was the one who got to hold his hand as he left this world!
I lived with both of my parents most of my life and I was there when they died 4 days apart! It wasn’t easy but I am glad that I was there for them
Well written..there should be a manual to read on these last few years of life with parents. Thru trial and error I did the same as you. Don’t get angry. Be compassionate. You will have no regrets.
My brother took care of dad during the day so I could work and I did nights so he could. Forrest my dad had stage four brain cancer. Dad loved being outdoors, he was a workaholic he was funny, layed back. I can honestly say I may have seen him mad 3 times in my life! Watching my dad go through this was the hardest thing in my life. All through life I always thought dad was immortal. His very last days of course were the hardest. He started talking to other relatives that’s passed before him. Told me he had holes in his walls. I remember that Saturday morning my boss came back from vacation I showed up too work. Boss said go be with your dad. So I did dad passed at 2:00 that afternoon. Before his last dose of morphine which I gave him. He said he was ready and all done. Told me and my brother that he loved us!
My mum just passed last wednesday ..I feel empty
I watched my mom and dad take their last breath. Before my mom died she told me that I was not to stay with her when she went to sleep. She made my husband promise that he would take me home the night she went to sleep because she was on morphine. I did as she wished and watched her take her last breath the next day. I prayed so hard that God would take her home because she was in so much pain with cancer and he answered my prayers. My dad had dementia qnd could not talk to me when he took his last breathe but Again I prayed God would take him to be with my mom. He lived 3 years after my mom died. I miss them both like crazy but it helps me to know one day we will all be together again. Hope everyone here can find peace.
I had the blessing of having my Mom in my home for her last month. She was 90. My husband was so supportive, and the only thing he asked, was that he didn’t want to physically take care of her. But he was there, and he gave four cars new brakes (My folk’s car, mine, my son and my sister’s) My sister came and lived with us, as did my 91 year old Father. Together with my third sister, and the help of Hospice, we cared for my Mom in the final stages of Parkinson’s disease. God really did it, ’cause there is no way, I would have been able to care for her that way. He was in the little things–like finding a peach stand open early, when my Mom wanted fresh peaches. And in the big things, like giving us the strength to be calm and whole while my Mom teetered back and forth between worlds. Many things in this article are true. It is a wonder. Mom was radiant when she passed. Weird as it sounds, Death is a beautiful thing. Mom taught us three girls so many things in her life, and then, she taught us how to die.
My dad died April 30th of this year. I’m still in shock that this actually happened. He was so full of energy. Always on the move and willing to help wherever needed. He loved people, and watching his journey from this life to the next was one he had to do alone. We were always there by his side, but he couldn’t speak more than a word or two. I always wondered what was going through his mind. He struggled with accepting death even though he wasn’t afraid to die. It seemed to soon since he was only 68 and completely healthy all of his life. He slept so much of the time. When it came to his last breaths, only a handful of us happened to be around his side. It happened so quick. I will never regret the time sacrificed to be with him as much as I could those last months of his life. My advice- don’t wait to reconcile relationships till there’s a death sentence. Do it now. Before there’s regret and heartache times a thousand. I’m thankful my dad loved me and we had a good relationship so when it came to his death I could relish in his love while he was still physically able to show it.
My mother died with her eyes wide open. I tried to close them like they do in movies but they wouldn’t close. The expression on her face was anything but calm. I’m trying not to read too much into that. She struggled a lot with dying.
Same for me. My mom struggled and her death was not peaceful. It was the #1 worst thing I ever dealt with. My heart aches every day.
My Dad also struggled with dying. He was so afraid, not like when my Mom passed. Giving him the Morphine and Haldol that Hospice supplied seemed to help him focus on his worries, and helped him “work things out”. I’m sorry for your loss.
This was well put. Not sure I should have read it at 10AM while at work because now I’m crying. We lost my mother in law 4 months ago now and I still carry little things of hers with me. I still hear her telling me “I’m leaving you in charge, take care of them” even though I’m the youngest. I still hurt like it was yesterday even though we weren’t each other’s favorite people. I talk to her, I think about her, and I’m hoping that the hurt lessens soon.