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.
[ratemypost]
Leave a Review!
We LOVE hearing from you! Submit your question or comment here.
Your email address will not be published.
812 comments on “Caring for a Dying Parent In Their Last Days – a Personal Story”
Tears are flowing. I lost my Dad March 1 this year….there are so many things I wish I had done differently. He made things so difficult at times or maybe it was just me …..not having enough patience….I don’t know……I do know I was in denial…..he lived with me a little over 2 years so I could take care of him…..so I saw him every day and did everything for him….after he passed I was looking at pictures wed taken and it hit me like a ton of bricks on how sick he really looked. I was so tired and exhausted…..but I’d give anything to have him back…..my mom passed 22 years ago and I suffered PTSD afterwards…..I feel like an orphan
I watched my grandfather pass 5 years ago tomorrow he died 2 weeks before his 94th birthday and he was more of Dad to me than my own father was .. you are spot on with a lot of things and I remember that day like yesterday. There are two things that stick out in my mind one being he knew his military badge numbers until the day he couldn’t speak anymore Cause that’s one thing he never lost was his mind . The other thing I remember that brought us so much comfort is he connected with the other side . He went back through his life and talked about not having tv or air conditioning he seen his parents his coworker and people that passed before him . This brought so much comfort knowing he was going to be with all them again they all must have came to him Casie he talked to them and about them . Thanks for sharing this wonderful story it sure was the hardest thing in my life I ever had to do.
how can I get a reprint of this article – Caring for a Dying Parent in Their Last Days.
After reading this, I feel the pain all over again, watching her sleep, talking to her when ahe was coherent, explaining to her that I had to put her on hospice and the look on her face saying why, watchung her talk to people that weren’t there and reaching for the sky, wishing that her pain would end, not knowing she would pass that day and then not being there when she passed like I so badly wanted to be. The pain is still there and never seems to end. It is a constant battle between my heart and my brain, knowing she is in a better place and no longer suffering but the pain in my heart keeps asking me why I chose to put her on hospice, why did I let her die. I miss her so much, sometimes the guilt over powers the mercy….
Thank you for being so real. I helped care for my mother in her fight against cancer for 3.5 years. She was on hospice at home for the last 4 months of her life. So so so much of your words ring true. She passed away with her hand in mine and I still have the vivid memory of the light leaving her eyes as she passed. She passed on august 15, 2018. It seems like yesterday and years ago at the same time.
I feel like I’ve lost my mom, my best friend, and so much hope for the future. I won’t have her for planning my wedding with me if I ever get married and she won’t be here to see me become a mother someday and hold her grand babies.
My mom had a stroke, was life flighted to OK City where I met her. For some reason my sister had been on the farm when she should have been in AR working. She packed my dad a bag and left to drive 3 hours to OU Medical where we were waiting. After 45 years on his farm, he never got to go back. They moved in with my husband and me, mom was in a great in house rehab, and dad making a new life waiting for her to join him. Although she had great therapy, mom declined. I finally quit making her get up and get dressed every day when she would sleep all day in a recliner. After a horrific UTI, she was send home from hospital with antibiotics and a warning that she would keep having infections until one took her. I called in hospice, decided then I would let her go home. I withheld meds except for heart and blood thinner.
About a week after that, I with held the food I had been feeding her thru the tube in her stomach they had put in 6 months earlier at OU Medical. Shhe wasn’t processing it any way. I still gave her water because I didnt want her muscles to cramp. I made sure she had morphine every 4 hours, even setting
My alarm. I had full support of all my siblings who all lived away. My sister came every week end, I waited for her to bathe mom one Friday night. We bathed and did her hair and had a devotion with her, my dad describing heaven by the scriptures she loved so much. She died just about 45 minutes later with dad talking to her and my sister holding her hand. I, of course, had gone to take a quick shower so I wasnt in her room. My dad lived another 8 months with us, until he died, with hospice at my home too. I knew he was dying on Tuesday because I got a whiff of a smell. He didnt stink, but as soon as he got up from his chair I smelled death. I called my sister that night and told her. Thursday he felt terrible so I took him to ER where they ran tests and sent a different dr. In to talk to him. His organs were shutting down but his defibrillator was keeping him alive. He choose to have it deactivated. Sister and 1 brother and nephew came up. I talked to him about how he wanted to die. He wanted to go to sleep and not wake up. I brought him home with hospice and morphine and he lived a day and 1/2. Even tho it was 2:00 a.m. 3 of his 4 children were with him when he died. Both my parents died at my home given the best care, and knew they were wanted here. And loved. They were both cremated and we buried them both the same day together. As hard as that 14 months was when they lived here. I wouldnt have had it any other way. My dad never went back to Hollis where he had lived all but 20 years of his 87 years except the day of Mom”s memorial. How comforting it is to know they sit at the feet of The Master now. They worked in The Lord’s church their entire lives and finally got to go home.
I lost my mother 2 1/2 years ago. She was to turn 99 in a month. She lived with my husband and I for just short of 10 years. She had living alone – my dad had passed away 30 years prior – she fell due to an undetected UTI but was in great shape and broke nothing. However, she went to a nursing/ rehab center where she contracted C-Diff and it took her down to a very weakened state due to serious mistreatment. I fought so hard for her, as I always did since my fathers death, but she was 89 and couldn’t return home. We had home health care and physical therapists come daily to help with her care. She was a hoot and loved family visits and holidays She was extremely hurt by my younger brother who estranged himself from her and the family for the 10 years she was with us. He never even came to see her when she was dying. She kissed his picture goodnight every night and I despised him. She buried her first born son, my older brother, 4 years before she passed. She was absolutely the strongest person I’ve ever known. Three years before she passed she fell twice and things began to go downhill from there. She had a perfect mind, thank you Jesus, up until she drew her last breath. The live of her life was her great grandson, Eli, who was so devoted and faithful, and whose name she called repeatedly until she passed. Here’s how it happened: on mother’s day 2017 I went to get her out of bed – we had no help on weekends-and she said Oh Kathy I can’t walk and I I barely got her the 4 feet to her recliner where she spent most of her waking hours. I said Mother you have to walk…how can we care for you if you can’t walk? I promised her no nursing homes and no hospitals and I think she knew her time was at hand. We had lots of family for mother’s day and she stayed in her chair. That evening my son and my husband went to lift her to get her into bed and in doing so broke her arm. Palliative care said she’d have to go to the hospital and she said no. She stayed all night in her chair and the next morning the aides got her into bed where she remained until the next Saturday morning when she passed. During her last week with we were able to have all her grandchildren and great grandchildren here to say goodbyes It was so beautiful. That Friday night before she passed I slept in the guest bedroom next to hers and her breathing was very labored. I got up to hook up the oxygen they’d brought that day and my husband helped. Next morning she was still breathing heavily so I called my son who was in town from Florida and is a pharmacist and he came immediately. I wanted him to administer a tad of the morphine the nurse had left. He said he didn’t think it was necessary that her color and circulation were good. He left to get his youngest brother who couldn’t drive due to a DUI My husband had left to get a bag of ice because we expected people again that day. I went in to talk to her and wipe her forehead with a wet washcloth. I told her see mother – no hospitals and no nursing home. Suddenly she grabbed my hand and sucked on the washcloth. I was so excited and said Di you want a drink and in that second she gave me a “hateful” look; which haunts me to this day. I wasn’t angry with her, but confused and hurt. I went to the kitchen to get a cup of coffee and my husband had returned and was in the basement putting the ice in the freezer. It was literally five minutes max . I went back into her room and she had passed. I wasn’t there to hold her, comfort her, pray with her in her final moments. I just can’t come to grips with that ending. I didn’t expect her to die at that time and I just can’t forgive myself; even though I know I did everything possible for her from the time my father died 40 years prior. Thanks for allowing me to share a very special tribute.
I lost my mom in August of 2018. She had been battling lung cancer for 4 weeks when she had a massive heart attack that put her on life support. For three days we sat by her bed in ICU talking to her and letting her know how much we love her. On the third day my sons arrived to spend time with her before we removed her from the machines. She had tears roll out of her eyes as we took turns loving her one last time here on earth. My dad, sister, oldest son and I were by her side as the nurse turned off the machine. She struggled a few moments, her final tears rolled down her cheeks, her eyes opened for the last time as we sang and prayed over her. I fight with my own guilt daily as I was the one who made the call to turn off the life support. Her last words to me were I’m sorry and I love you before she was put on life support. I’ll always have that conversation but it doesn’t take the pain away of losing my mom.
Your words were my words, I couldn’t sleep or take a shower, I needed someone to watch his chest rise and fall and couldn’t leave that responsibility to anyone else because if they missed it how would they live with that or how could I forgive them. I finally got a nun to come and do just that all night long. I finally slept and he passed the next morning in mine and my sons arms. I was there when my mother took her last breath at 49 years old from a brain tumor and was there when my father took his. I wouldn’t have it any other way. I’m only 45 and an only child. I don’t think it’s fair to not have a living parent at this age but some have it worse then me and for those years I am grateful. My only worry is for my son who lost his dad when he was 40 and now his second father in my dad. I always soothe myself knowing that I have two guardian angels looking over me and my son at all times. But I miss them every moment and still want them here with me. Thank you for your post. So sorry for your loss.
For me, when I got married I found my Dad so to speak because my biological father was there in my life, I lived with him, but; in reality he didn’t want to take away time in his own life to be a dad. At the end of my FIL’s life I watched him die of congestive heart failure. He was in the hospital his last few days and the family had to meet with the doctors. I was asked to stay with my FIL. He asked me if he could hold my hand. I said yes. He told me that he saw himself dances with the nurses in the hallway and did I see him. I decided to just say ‘yes’. He asked me if it was raining outside. I said ‘no, just dirty windows’. He laughed. We were both silent then. The family came back in. My FIL and I were still holding hands. They talked awhile. I had to return home. Three days later he passed. I will never forget this moment because it was the only time I had really been with someone close to me when they passed. He and I had a special bond. I will always remember.