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Caring for a Dying Parent In Their Last Days – a Personal Story

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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 - a Personal Story

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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ABOUT JILL

I am a mom of 3 awesome boys that love to get crafty with me in the kitchen. Our blog is full of all sorts creative food ideas for the Holidays, Party Ideas, Free Printables, Featured DIY Ideas, Recipes, & Kids Craft Ideas! Read more...

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My mum just passed last wednesday ..I feel empty

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!

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.

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

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!

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 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)

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.

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