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 took care of my father in law in hospice for 7 months this past spring. My Dad died when I was younger and this man was another father to me. Now, just 4 months later, my mother is now with my sister in hospice care. Your viewpoint is spot on. I told both of them it was my honor to take care of them for however long it would be.
The circle of life becomes very apparent. God bless and give strength to all who are doing this.
Thank you for this! My dad just passed away two days ago and I am having such a hard time. I was the ine with him when he took his final breath, he took it just after I told him not to worry, that I would take care of mom and everyone because that’s what he would of done. It was almost immediate that he stopped breathing. I am so glad I said that so he could be a peace knowing I would take over for him. It just hurts so much!
Your message is spot on. I lost both my parents this year, my dad in May and my mom in September. We were with them at home when they passed and my family & hospice were invaluable. I had time with my dad before he died and we were able to say how much we loved each other. Like you & your mom, my relationship with my mom was complicated although she was my best friend. I too wish I had been a better daughter. We each had private time with her during that last week but she didn’t talk much, just reached out and hugged & kissed us. I feel like I barely had time to grieve my dad because she could not be alone so we immediately shifted into caretaker mode. I’m retired and I may have too much time to think but I wonder if she knew how much she meant to me. I did tell her she was my hero but I’m not sure she understood what I was trying to say. For the rest of my life I will wonder if I did enough or if I did it right. God bless you for sharing your story and letting us know we’re not alone.
I just lost my father who died in his bed after being cared for for two years. This sums up everything I feel and went through. Beautifully said.
My mom fought a two year battle with breast cancer. I sat with my mom in the hospital for 2 weeks before she passed. I stayed with her 13-15 hours each day. She called me her rock. She relied on me for strength. On her last earthly day, our family was gathered to talk to the doctors to make decisions on the next step. While we were gathered outside her doorway, she looked right at me and said “I love you!” Before this, many of her words were unclear. I believe this was her way of telling me to make the decision to let her go to Heaven. And I find peace because of this! Not a day goes by that I don’t think of her. She has been gone for 18 months.
I sat with my dad as he was passing, I had to work, but my mom day with him and I would go see him after work and sit till I had to go home to bed, everyday for a week. I remember the first few days I thought he was ok, he was still making jokes, but no longer eating. My son gave him some tea on his sponge, he said this taste like horse pee, and we all started laughing. He loved it. The laughter. That was my dad, loved to make everyone laugh. But the last day, he was shaking and fever and eyes wide open and mouth wide open. I know he was almost gone, but as I put the cold rag on his head, and looked into his eyes and said test daddy, it’s ok to close your eyes, I saw him try to close his eyes. I went home and cried, praying to god please take him don’t let him suffer. The next morning he passed before I was awake. It is the worst thing I have ever been through. But I am at peace knowing he us home and not hurting anymore.
I went through the same thing with my husband in March I sat beside his bed everyday for 3 wks and I was told I didn’t need to sit all day by the nurses and Drs but I didn’t want something to happen and I wasn’t there so i continued to go everyday and I watched him take his last breath and my granddaughter was with me It’s a terrible thing to go through . I have moved to another state and living with my daughter and family . I cried a couple times reading your message I could relate with everything prayers for you and your family
My father passed away suddenly in 1992. I was 20 years old. He had a massive heart attack in his sleep. I always thought that would be the best way to die. Suddenly without severe sickness. However now I’m not so sure. My mom just passed away 3 days ago and although her last days were very difficult. I was able to let her know how much she meant to me. She had congestive heart failure and endometriosis cancer. The last week of her life I was by her side holding her hand and telling her what a great mother she was. Although she slept a lot and was awake very little I am grateful for the time that we shared. And as you mentioned I didn’t want to leave her side in fear of missing her awakening and I not be there. She was such a loving and caring mother. I have been fortunate enough to spend a lot of time with my mother over the years. She never got her drivers license and I was her main means of travel. Which at 20 years of age seemed a little like a chore. But as we aged it became more like adventures and I cherish every trip we shared together. My only regret is I didn’t make more time for fun trips. Most were running errands. However we did have some fun trips just not as much as I wished we would have. We were able to take a beach trip and have some fun. And I too long to hear her say my name and ask how my day was. I just wish I had a voicemail from her. You don’t realize until it’s to late the little things that you miss. Although my mom wasn’t very alert in her last days I was able to be by side, hold her hand and run my fingers through her hair and along her face. Those memories I will cherish forever. It may have been a little selfish of me to be glad I was to tell her how thankful I was for all of her help and love knowing her days were limited. So to any one making this journey with a parent, be there as much as you can and tell them how grateful you are that they were chosen to be your parent. One thing I wish I would have done earlier is to let all of the family and relatives know sooner. I just didn’t realize how fast her health would decline. May god be with you and provide comfort for you and your parent on your journey.
Thank you for sharing. So many of my experiences with both of my parents passing were the same
It helps so much to read your words!
It is so hard, but what a gift we have given our parents! Rest knowing you have your heart to your Mom!
You are very well spoken and articulate, I can’t tell my story as beautifully. My story is the same but different. Sitting by mother’s side I remember holding her hand and stroking her soft freckled arms. She had beautiful skin. In her last weeks she couldn’t speak but her eyes spoke to me. She was disappointed in her sons who didn’t come around. She had expected them and not me. Never the less I was glad I was there saying prayers to her. I found that I had a hard time coming up with thoughts and words so I just prayed. Now I have so much to say. I knew she was ready to go to Heaven when the day came. I gave her up so quickly and now I regret it. I should have argued with God not to take her so fast because though I thought I could let her go I wasn’t ready. I miss her so.