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How To Help a Parent to Die Well How To Help a Parent to Die Well

How To Help a Parent to Die Well

Saying goodbye to my dad was one of the hardest and best things I’ve ever done. It took a year. He was in horrible pain. He was losing everything that he held dear and he needed someone to witness the awful process and bless it. That person was me. Dying is not something we do well in Amer…
By Seth Barnes
By Seth Barnes

Saying goodbye to my dad was one of the hardest and best things I’ve ever done. It took a year. He was in horrible pain. He was losing everything that he held dear and he needed someone to witness the awful process and bless it. That person was me.

Dying is not something we do well in America. Partly it’s because we’ve not had any practice helping other people die. We let the professionals do it for us. And then when it’s your turn, it’s the first and only time you die. Maybe you felt like dying before, but when the doctor tells you that you’ve got just a few months left to live, you’re playing for keeps.

Doing it badly

But in America, we especially do it badly. This is a country where Jane Fonda can be in her 80s and look better than most 50 year-olds. If the grim reaper is following us, we are shuffling along as fast as we can with our walkers to stay out of his reach.

When our parents get old, we expect them to move to Florida and eventually, into assisted living. If we happen to live in Muskegon, then we’ll get on a plane to see them when we can.

One of the hardest things about helping dad to die was passing by all the old people in wheelchairs with nothing to do and no one to talk to them in the nursing home halls. In one assisted living home, they would crowd around the door to the outside world and try to make a break for it when it opened. It was an outer ring of Dante’s Hell.

Dad screaming

They put my dad at the end of the hall. My dad, the doctor, the colonel, the president of his class at Yale, hero to thousands whose lives he saved, was reduced to an afterthought in a storage facility for the dying. 

He would yell out to the nurses from down there. I’d hear his shouts down the hall. Maybe he was following Dylan Thomas’ advice to “rage, rage against the dying of the light.” Or maybe it was just the pain of the bed sores that would eventually kill him.

I’d walk into his room. “Dad, what’s going on?” I’d ask. But he wouldn’t say.

He bounced from facility to facility. Hospital to rehab to assisted living to nursing home. In each place, he’d be greeted by vacant stares and a roommate who was in worse shape than he was. I was happy if I could get him a bed by a window.

My job had no training manual. When the doctor said, “If we don’t operate in a few weeks, he’ll die, but if we operate, it will just prolong his pain,” there was no standard procedure. 

I’m one of four siblings and my brother and sisters counted on me to stand in for them. To love dad through this for the family. So, I learned the hard way. For those of you who have this assignment in your future, here are five lessons I gleaned from the experience.

1. Show up

Dad’s life had been filled with adventure. But now it was filled with the banality of meds and protocols. Going to the bathroom was a project. At some point, he lost the capacity to even read books. Often, when I’d show up, it would be the highlight of his day. I needed to show up.

The thought of dad sitting there alone, trapped in his wheelchair or bed, haunted me. All my life he’d not really needed me – I didn’t want to fail him now that he did.

2. Bring gifts

The food was bad, so I brought ice cream.  I would stop by the dollar store to pick up a bunch of puzzles and novelties. Hot cookies or ice cream were a welcome treat. The thing he liked the most was toothpicks. It didn’t need to cost much, but it showed that in my own small way, I was fighting for him.

One of the best things I could do was to read books to him. He loved “Tuesday’s with Morrie.” 

3. Form a team

While many of the nurses were overworked, most cared a lot about their patients and wanted to help. At the Oaks Rehab Center, they’d periodically wheel dad into a room with five professionals, all from different disciplines. Each would take ten minutes to recommend action. I appreciated their team approach.

And I needed to find others to care as well. Without family members helping out, it would have felt impossible. My sister, Liz, and my wife, Karen, were true partners who did so much. My daughter Emily spent a week caring for him so I could travel.

I often reached out to dad’s old friends, getting them on the phone. Those phone calls to say goodbye when the end was near were a gift to him.  

4. Hold his hand

My dad was never an affectionate guy. When he’d greet me as an adult, he would  sometimes shake my hand instead of hugging me. But in the sterile world of hospital beds, he needed touch. Along the way, I learned to hold his hand. I learned to do brave things that I’d never do growing up.

My role with dad actually reversed along the way. He would follow my lead. It became natural to do things that would have been awkward earlier in our relationship.

5. Pray

There was so much that we couldn’t say to one another. So much that we didn’t have words for. But prayer always worked. It connected us and gave him space to say things to God that he couldn’t say to me.

I’m glad that we were able to talk to God about the stuff that really mattered.

*    *    *    *

One of the things I did to help process all we were both going through was to take up poetry. Here’s part of a poem I wrote about it.

Role Reversal

I didn’t want to make this trade.

But who else would help you?

The protector needs protecting.

The provider waits for me to

Bring a spoon to his mouth.

As your small son, I lay in diapers,

Flat on my back, waiting for you.

Now that is your day.

I live between the

Outward-spreading ripples

From events long past,

Ripples you navigated

Years before I was born

That we now navigate together.

It was a relief when his pain ended. As a family we had a last communion together. We wept. We hugged. We waited for what would come next.

One day my family members will probably get to help ease my transition out of this world and into the next. It’s a tough assignment, but I’ll be so thankful to have them helping me on my way.

Who in your life needs your help in making the transition from this world to the next? What is your plan for helping them?

 

Want more on the subject? Here’s a book on palliative care that is good. 

Comments (36)

  • this is why I like you and am a better man for having met you. thank you. I will save this and refer back to it when it my turn

  • Your faithful care for your Dad, Seth, was not just a gift to your Mom or siblings or other family members. It was a gift to each of us who loved your Dad as a friend or mentor or brother. That last year would have been pure torture without your regular presence and the visits from other family members as well. You have given 5 excellent suggestions here. I would suggest that might be summarized under one phrase: Help them (us) feel loved. That is what you did well.

    • Thanks, Brian. Getting to know you better has been one of the great gifts of this leave-taking of my dad’s. I see why he considered you such a good friend.

  • I wish I had your knowledge when I first took care of my Dad until he died when I was 33 years old. I fell apart completely and it took years for me to get back to ” Normal”. Then it was time to spend 14 years taking care of my dying mother. She was giving a healing on a cancer that was to kill her in 6 months in March of 1996. She lived at home except for short rehabs after surgeries until August 1, 2001. In those 9 years I have learned a lot. I am still single because I lost 3 engagements because of my dedication to my family. I was all they had and If I had to do it again, I would. I am 60 years old, trapped in a 40 year’s old body and never had children as I thought you should be married, and I was not. Your father was top notch. I love and respected both of your amazing parents. I sent your Mom a card at Christmas, I hope she is doing well. Lot’s of love to Liz and Nat and Christy! XOXO

    • I’m so glad that my parents reached out to you and made that connection back when you were a teenager. Shelley – we can’t go back, but we can live today for all it’s worth! I’m going to Nigeria at the end of the week. It looks like a crazy thing to do. But regardless of mistakes I’ve made, I want to die from here forward without regrets.

  • I loved reading this, I have been in Healthcare for 36 years and see how people don’t really see the elderly, they look over them as though they don’t exist. I once had an elderly women start crying because I laid my hand on her shoulder, she covered it with hers, and said it felt good just to be touched, that it had been a long time since someone had physically touched her. I believe it’s so important to teach our children the value and respect that older people deserve, their lives are important till the end. Your dad was truly blessed.

  • Seth, this was so beautifully written. I remember in that season reaching out to you about this very subject and how to help my mom who was taking care of her dying mother. Your words and advice meant more than I can ever say. They were so helpful in navigating unimaginable grief.

    When you wrote, “All my life he’d not really needed me – I didn’t want to fail him now that he did.” That resonated deeply with me. I felt that in comforting my mom, as well as being with my grandmother in her last days. Thank God for that conviction to be there and show up, even though it meant carrying the heaviness daily. Seeing the fruit of it, I pray, will help me when it comes times to help my parents transition.

    Thankful for your willingness to let God use that season to help others.

    • Yes – we fight a private battle, but the paradox is that it is also a universal battle. You are a good one, Ashlin. You see the world well and you continually show up when it counts.

  • Seth,

    You will be in my daily prayers. Yes, because of your parents and Liz, I accepted Christ as my savior in my pre teens. I am grateful forever for their love and acceptance.

  • Thank you for sharing your experiences and journey with your dad. I am in the midst of this with my parents who are 92 and 93 and not yet believers. I’ve been praying for them since I accepted Christ 52 years ago and will continue as long as the Lord keeps them here. It is a hard blessing to be in this stage and a privilege.

  • Thank you, Seth, for your account of being there for your Dad and for your wonderful poem. My Mom is almost 90 and is in assisted living. My two brothers and my husband and I rotate every third day Skyping Mom. We are not allowed to visit her in person – even outside, as we used to be able to do (even though Mom already contracted and recovered from Covid). We long to touch her. Mom can no longer communicate in a way that we can understand and oftentimes is silent during our half hour visits. It seems to comfort her, however, when we talk about things from her childhood or sing her songs from her era. We read verses to Mom and pray for her, though we do not know where she’s at with Jesus. It is hard. This opportunity to pour this out has been good.

    • That’s good to hear, Martha. Just being OK with offering your presence. Just being silent or giving her something that may be familiar and comforting.

  • Seth, thank you for taking the time to share your insights. We did this for Phyllis’ mom. After it was all over I felt that I had not done as well as I should have. Phyllis was great. One thing that I learned was to ignore the dietary restrictions. If they want something, give it to them. Refusing and arguing removes dignity. You are right. The final months of this journey can be trying, exhausting, and heartbreaking.

  • I was taking notes throughout, but it’s good to have your synopsis here. Now make sure you live another 30 years at least because I’m not close to ready to do what you did!

  • Thank you SOOOOO much for putting this in words. It is a huge task and there is no manual that can fully prepare you for it, especially when it lasts years and years and years. But these lessons you shared are gold. It is a painful privilege for those of us who get to help our parents transition to their eternal home. There is so much more I could say in regards to some of the loneliness they and we feel, yet I would be amiss to not also mention the holiness that sometimes permeates those moments together too. It is a sacred time when you share suffering together, but it is hard on the heart as well. And when it is happening, you want to process it and talk about it, but you also want to honor them too so you don’t want to share too much about the screaming or childlike tantrums or diapers. It’s humbling to remember that this is how we might exit as well, and that helped me love more unconditionally. I know I was not just emotionally tired after it all, but physically as well, and maybe even spiritually too. Thus, I think it very important we stay connected to community that nurtures us through these times especially.

  • I was with my dad when he took his last breath about nine years ago.. I have high hopes for the time with my kids, grandkids and hopefully great grands leading near the time of my death.. I hope to prophecy to each one like Jacob did his family… I hope… God knows.!!

    • Great idea, Joseph. And I can see you doing just that! If you go before me, I want us to pray over one another before going.

  • This is so good Seth. So thankful you were there to honor your dad well as he transitioned. Thanks for sharing the costly wisdom you gained through it.

  • Thanks for these words Seth. I think this is my favorite post of yours yet— especially as I am now watching both of my parents help their parents through the end of their lives. Blessings to you, sir!

  • Seth I did the same thing you did for both parents close to 15 years and I always said nobody handed me a manual So glad I did it no regrets just lost my mother 0f 92 years young . I wish I could do it over I thank the Good Lord and his beautiful son Jesus for guiding me and giving me the strength. My 2 siblings lost out they never showed but my youngest daughter did. I have a lot of great memories and a lot of time on my hands I ask the Good Lord to direct my path daily because I’m lost I miss them dearly

  • What a wonderful gesture Seth, to detail & post your journey with your Dad. Your example does show the importance of being there for our loved ones as they near their journey to the heavenly realm. Your point about touch & closeness is critically important based on the experience Carla & I have had with the passing of our mothers. Thank you for sharing your journey.

  • That’s a good point about processing while at the same time honoring. The whole thing is just awful. I had such a need to process by writing poetry.

  • Yeah – people are afraid of death. Part of getting ready for the hard work of helping others in their process of leave-taking is to be around the dying more. I’m hopeful that as families and churches we can do better in the next generation than we did in the last.

  • Thanks for sharing, Seth! Definitely resonated with a lot of what you wrote. I’ll have to check out that book sometime.

  • Yes, you have been patient, Bill. Thank you. If you’d like, I could send you my book of poems about the journey.

  • Seth,
    Kudos to you for taking this on and writing about your experiences in a teachable way for others. I am walking your path with my father and mother, both 93, and on a similar trajectory. And you are right, you have to show up and be a part of the ritual. It is a sober reminder of what lays ahead for us. It is good to make this connection with you and bridge the 50 years between then and now.
    Best,
    Robbie

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Seth Barnes

I'm motivated to join God in his global reclamation project. He's on the move, setting his sons and daughters free from their places of captivity. And he's partnering with those of us who have been freed to go and free others.



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