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 moved and relate whole heartily. I did Hospice care in my home for my mother. I have no regrets. I did it all , washed her body, cleaned her false teeth and gave her enemas. Cooked for her, prayed with her, laughed with her. We reminisced about my Dad who passed 15 years prior. She even spoke a lot about her first love.
I do however wish 2 of my 3 siblings would’ve been there for ME. I was sleep deprived..I was exhausted. I slept near my Mom for 28 days. I played her favorite music (mostly Frank Sinatra) . I would fill coffee mugs full of whipped cream… she smiled and giggled..because that was her dying wish.
I only wept while I did the dishes. My mom only saw my sunny side.
I am honored that my Mom wanted me on those final days . I hope anyone who goes through this looks at the opportunity to be there with their parent as a BLESSING..and I hope if there are siblings, they can arise to the occasion and be part of the team.
I journaled through this process . I reread my own words and have realized that I have come full-circle.
I love and miss you my sweet mother.
From August to the middle of October I watched my grandma suffer and fight in the hospital mostly in ICU. At one point from one of the time she coded she had to be intubated. At that point in my life because she wasn’t fully sedated that was the worse thing to ever see someone I love have to go through. She begged us to take it out.
Starting at one hospital in the er she was transfered to a sister hospital after a week because the one we were at had no rooms available on the floor to tend to her medical needs. After a month at this hospital she was transfered back to the first hospital because the doctors thought at some point she was going to need dialysis, which they weren’t equipt to do.
My mom originally made my grandma go to the er because she was very form to the touch. After some test the Drs came back and told my mom that grandma had heart failure fluid built up in her body. Along with that there was fluid in and around her lungs, and on top of that she originally was on antibiotics for some infections in her feet and abdomen area.
Fast forward to the middle of October. So the drs couldn’t get the infections out of her system and with that they werent able to amputate on her one foot (it had gangrene). The drs told us that they had exhausted all of their options and that there was nothing else they could do for her. With there being less than a 1% chance of coming off the table alive if they put her under that no dr was going to touch her with them odds. They gave us our options, nursing home or hospice care at home. We went with her wishes and brought her home.
Between my aunt, my mom and myself we stayed overnight at her house with her and my grandfather to help take care of her. This was a long 2 and 1/2 month exhausting mentally and physically draining process. There was a scare in Halloween where we were told she has 24 to 48 hours. After that it was a count down. To her birthday on November 19 then to Thanksgiving. And then to Christmas.
However 1130 am on December 23 we watched her take her last breath. Going through this fight with her and watching her take her last breath was far worse than seeing her intubated begging us to take it out, or watching as the nurses changed the bandages on her feet where the skin was deterring away from her. The fight at the end to clean her and change her was rough. She was in so much pain even with all the meds they had her on for the pain. We laid her to rest on the 30th. It’s hard to lose a loved one right before Christmas and to bury them just after. Not only for the obvious reason of were all broke from Christmas shopping but now Christmas for my family and I is forever changed.
My dad died this April . We had two weeks from cancer diagnosis to death and only five days in Hospice. I get everything you said and did almost everything the same as you did. I did sleep at night but with my door open to hear my dad and my mom sleep right next to him on the couch. I was with him when he took his last breath. Thank you for saying they feel yr presence even when they are in that other world. I needed to hear that.
Thank you for sharing your story. My mom died of a massive heart attack so I never got to say goodbye and share that closeness with her. Honestly, I’ve thought about the “if” she wouldn’t have died suddenly and suffered through an illness, if I could have handled doing what you have done. I don’t know if I could. My mother in law recently passed away in June and my husband and I were present along with his other siblings. She made it look so peaceful and calm. It was a difficult process to watch but I was trying to be supportive for my husband and his siblings. My heart ached for them and it really brought back the emotions of losing my mom again. I’m so thankful my mother in law didn’t suffer so badly. My husband has been a wreck. When we left her home later that day, he said, “oh my God, what did we just watch?” It was so traumatic for him. I hope folks read your story here and remember when or if they are in this situation to follow your advice.
Oh, where to start…years before she actually died she was diagnosed with breast cancer when she was 60. She just “lifed” along after that. We went on a cruise, we had family gatherings, we talked on the phone. My mother had chemo and radiation until the doctors said it wasn’t working and gave her a few months to live. My niece accused my father of inappropriate sexual contact. My brother went berserk And tied our father to a poll in the basement and took my mother from her home with my father to his house and put her in a 3rd floor bedroom. He took their bank accounts and put them in his name. He and his wife both worked full time and left her home alone all day with no one to take care of her. My sister got involved and blamed me for siding with my brother because because after my father was released from being tied up he called me to tell me what my brother had done and I told him he was lucky that it wasn’t our daughters he molested because my husband would have killed him.
My sister went over and got my mother and took her back home. My mother went to the hospital for care a few weeks later. My father went to the hospital and caused a scene about the bank accounts and was forced to leave the hospital that day. My family went to the hospital to spend Christmas Day with my mother. She had given me money to buy gifts for the grandchildren…the last gift she would ever give them. I bought special small holiday candy dishes as mementos for our daughters and a going home from the hospital outfit for the baby girl our daughter was expecting in February. My sister arrived as we were leaving. She had balloons and decorations for the room. She was dressed up, wearing sequins and party clothes. I went back the next day and stayed until my mother was released to go home. The doctor told us there was nothing more they could do and not to call 911 if my mother for worse. We took her home. My father was there and she wanted him to take care of her. They had been together since they were teenagers. They had been married over 50 years. We never talked about my nieces accusations and I begged my father to let my brother in the house to see our mother. He agreed and went up stairs and stayed there while my brother was in the house. We rotated days staying with my mother for the next two weeks. I stayed my night alone. Then I stayed with my brother for his turn. My sister then took a turn. We all had full time jobs. I can’t remember how long we did that. A hospice nurse came every day to check on my mother and her crazy., mixed up family. On February 13, 1989 the baby girl our daughter was expecting was a boy! I left long enough to exchange the pink and white outfit for a blue outfit with a teddy bear on it. When I returned the hospice nurse, who usually came once a day, had also returned. She knew the end was near and decided to stop by again. My mother died with my father, my sister, my brother and I in bed with her at noon on Valentines Day. My father immediately went back upstairs. My brother left the room and went out in the back yard. The hospice nurse, my sister and I bathed my mother, changed her gown and bedding. After the nurse left my sister and I sat with my mother for a while before we called the mortuary. They came to pick my mother up. Then we cried. My sister and brother left. I offered to stay with my father. He declined the offer so I went home. We didn’t have a funeral or a wake. My sister had prearranged the cremation. I didn’t see my father, sister, or brother until the day of the cremation. I arranged for some flowers to be placed on her cardboard box casket and wrote the obituary for the newspaper. I didn’t see or speak to my brother or sister for a very long time after that day. I called my father and took him out to lunch or dinner for a few years after that. My sister took over all of my father’s affairs and I rarely saw him after that. I don’t know if my brother ever saw him again. When my father was hospitalized in 2009 my sister didn’t call me until after he died. She told me she didn’t believe in death bed reconciliations. I never questioned her decision. She took position of all of his accounts, and positions and sold his house.
It helped me to put this in writing. Mother and I had a very close relationship. My father was very distant. I left home when I was 18 and went away to college. I married and moved out of state. I never lived at home again so my relationship with my family was always distant.
I still miss my mother after all these years. I talk to her quite often. I feel sad for those last years of her life and all the things she missed. Her grandchildren and great grandchildren…..Now, I’m 78 years old. I’ve been with my husband for over 60 years. I had a career in public school education for over 25 years. We have two daughters, 6 grandchildren and we are expecting our 5th great grand child in March or April. You are never too old to miss your mother.
You nailed it perfectly, though it is something one has to experience first hand to understand. My father passed in 2016 and this describes the experience perfectly. Barring untimely tragedy, it is something that will happen to many of us as well. Thank you for sharing. Peace be with you and your family.
I lost my mother to dementia 4 years ago. I cared for her bathe her Fed her and tried to keep her memory Alive mainly with music. She would sit on her rocking chair rock back and forth and smile and tell me which songs she liked. Two and a half months after she passed I lost my dad to a broken heart (he missed my mom)
I can really relate to this. I am 16 years old and April 19th 2019 I lost my dad to cancer. The last week of his life I spent in the hospital. He didn’t wake up at all that week and if he did he wasn’t actually awake. I stayed up for 4 days afraid of something happening if I fell asleep. I couldn’t eat I had no appetite. My dad and I were on a rough patch before he became sick but then we connected again. Watching him lay there lifeless I had so many regrets on how I held a grudge on him for so long. My family finally convinced me to sleep and my body was extremely drained. I took a nap right next to him for about 3 hours and woke up. About 7 minutes after I woke up, I put my hand in his chest and felt his last heart beat.
This was perfectly written. I lost my mom October 5th 2019 to cancer. My brother in law died 10 days earlier to brain cancer. It was so so rough. We have 2 young kids. My dad was ok but my mom said often that I was her comfort person and dad annoyed her. How could she not feel comfort in him? I felt guilty that she spent her entire life with someone like that. I was happy to be her person but it took a huge toll on my life and family. I miss her terribly and as time goes on, it definitely isn’t getting easier. I think it hurts more now then it did then. Thanks for this. I needed it.
My mum passed away on May 8th this year (2019). She had dementia and went downhill very quickly after major issues with bowel and bladder infections and incontinence. Two weeks earlier, she had said my name clearly. It was hard to sit all through the final night with her in hospital and watch as her body convulsed, her eyes became as big as saucers and knowing i could do nothing but ask to have her pain medication increased. Mum and i had never really been close until i was in my late 40’s (i have just turned 56). She was a very difficult woman, cruel at times and very outspoken. Dad passed away 6 years ago and my world fell apart as we were very close. Mum and Dad often argued with Dad backing down to keep the peace. He was a gentle, loyal and honourable man with a huge heart. He had to be. You see, Mum was an alcoholic. She became a very nasty person after drinking and it broke his heart. I remember him saying to me on many an occasion, ‘if only she didn’t drink, everything would be ok’. Mum left Australia when she was 18 and ventured to NZ on holiday, with her mum, not to return with her. She met Dad and at 19 she married him. They had three girls of which i am the oldest. Mum had started to get Dementia just before he passed away and never really knew that he had passed away. She couldn’t remember going to the funeral either and from that moment on, she progressively got worse. She drank every night, not remembering where she had put the wine bottle, thinking she had only had one or two glasses. She had put it in the recycle bin empty after finishing the entire bottle but had no recollection of doing so till she looked in the bin as a last resort. She couldn’t take care of herself at all with the many bladder infections and hospital was her second home. She had to be in care because she was a large woman and the assistance she needed toward the end was 24/7. In the last 2 weeks, she became semi conscious and would drift in and out, unaware of her surroundings or what was going on. It broke me. This previously strong willed and bitter but strong woman was my mother. Despite my devastating childhood and all my heartbreak, i was watching my Mum die. Her breathing became less and less and was very shallow. Then two very small breaths and she was gone. I was holding her hand when she passed. Mum never had the need for material possessions, jewels or anything expensive. She had the bare essentials but was very financial thanks to Dad and could have almost had anything she wanted. She went without all her life, by choice though, as she hated spending money unless absolutely necessary. Although she had been cruel to Dad and he feared for his life at times, he told me before he passed, ‘i do love her you know’. I nodded and said ‘i know Dad’. We sometimes forget to see the good in people who have not been so good to us. I know i would rather have her and Dad here right now, without all their pain and suffering as it didn’t matter where they lived, it was always ‘home’. I miss them terribly. It’s a pain nobody will understand unless sadly they too have experienced it. Rest in Peace Mum and Dad. I love you dearly xox