The Bed Post

They really started with it on day one:

…and we will get you all the equipment you will need: A walker or wheel chair, a shower chair, hospital bed….

“Sounds great, but we won’t need the bed,” I said. “She’d prefer to sleep in our bed.”

A hospital bed would make things much easier on you, and more comfortable for her.

“And would be a nice thing to add to the bill going to insurance,” I cynically thought to myself, as though hospice professionals are paid on commission. “Actually, our bed is pretty great,” I said cheerily, “and she’s up all the time, so I think it’ll be fine.”

Of course, Mr. Wilder. Just know that it’s available whenever you decide.

Isn’t that funny? From the get-go they assumed we’d come around to realizing Karyn would be better off sleeping somewhere other than in our bed.

The next week we met with Karyn’s nurse. “I know you’ve resisted getting a bed brought in,” she started gently. “May I ask why?”

Resisted? Well, that seems loaded. “This is her bed. This is our bed. She’s comfortable. Besides, taking it away sends a message to the kids, to Karyn,” I rationalized. “I’m not saying we can’t get a hospital bed brought in. I just don’t think it’s necessary right now.”

And then it was necessary.

Not too far from 20 years ago, Karyn and I were newly married. We moved from our tiny apartment in a cut-up Victorian near SJSU to a small house in a lovely part of East San Jose. Our bed was our first “major” purchase. We saw it in the store and immediately fell in love with its minimal platform design, natural wood and utilitarian good looks. It cost many hundreds of dollars.

“Man, that’s a lot to spend on a bed,” I said.

“Yeah, but it will last a lifetime,” Karyn assured.

The bed came to that rented house and then to our first home: a smaller house in a less-lovely part of East San Jose. It then moved to the larger house we’ve had the good fortune of calling home for almost 10 years. In three different houses, surrounded by incrementally improving dressers and marginally better art choices, it has been the constant. Perfect: No upgrades needed. So sure, I suppose there was some resistance to taking it apart and pulling it out of our bedroom.

And yet, that’s how I spent an evening last week.

Our son wanted to help take the bed apart (he loves a project), and his enthusiasm kept me from coming apart. Together we carried the different pieces up the stairs to store them away. Our daughter helped navigate the mattress around corners and away from pictures on the walls. Dear neighbors brought over a twin mattress set and helped set it up on a metal frame so it could be right alongside Karyn’s new electric fancy-schmancy bed. There was talk of getting matching sheets so that together they still looked like one bed.

But when we were done, one look into our room made it obvious that it wasn’t one bed. It was her bed and my bed, and the side rails of hers meant we could only push the mattresses so close. The resulting gap felt like the Grand Canyon.

The electric bed is, without a doubt, the best thing for Karyn and all of us caring for her. There is truly no question about that, and it probably should have happened sooner. But I keep going back to what Karyn said. She said our bed would last a lifetime.

I don’t want her to be right.


21 thoughts on “The Bed Post

  1. My heart is in my throat. You are living that Winnie the Pooh saying, “You are stronger than you thought, braver than you thought”. My prayers for you, for Karyn, your children. There are so many who love and care for you so deeply. I pray you will feel all that love and support to carry you through these difficult days. Thank you for sharing your story, your pain. I also pray for the healing miracle you need so badly.

  2. My heart aches for you & Karyn, for your kids, for your family. Such an eloquent, raw, heartbreaking post…Sending so much love to you all today and every day.

  3. Oh my heart goes out to you all❤️
    We just never know what a “lifetime” might mean?
    Just know you have made the right decision .This hospital bed will benefit you all and make Karyn so much more comfortable.
    You are as always ,in our prayers
    Xxoo Sharon

  4. Todd, this post reached down by throat, grabbed my heart and shook it into reality. You have managed to explain to the world your deep love and devotion to Karyn through the simplicity of the bed you two have shared all these years. You are the bravest of souls, my dear friend. We are here with you in every way possible.

  5. I’ve never done well with transitions, and your posting pegs my heart to 100% empathy. Your feelings are real and valid and you should have no qualms about the feelings you have in response to the Hospice questions. Also, we are beings of light and energy and something as person as a bed takes on some of our energy over time. It makes it all the more real when the bed goes upstairs. And, the energy remains.

  6. Thank you Todd for sharing this personal, tender and heartbreaking story. It is a vivid reminder of day to day impact the disease has on Karyn and the family. Sending loads of love out to you all.

  7. Karen (my wife) and I read The Bed Post and found it difficult to read. Not that it was poorly written (neither partner in the Karyn – Todd marriage is guilty of poorly writing anything) but Karyn is part of a special family, the Kantolas, and we hold them dear in our hearts and minds. This is a time when we wish we could do more than just hope and pray but distance and age limit us to doing just that.

  8. Oh Todd, a very audible gasp came from my throat when I read your post. I hurt for all of you. You have my love and prayers. I am just angry right now.


  9. Todd, I was at that wedding almost 20 years ago at that winery. I respect your ability to do “what has to be done”, but we HEAR your pain. We are with you hoping Karyn isn’t right. God bless you all.

  10. What beautiful sentiments so eloquently captured. My heart is heavy for your family and all that you are experiencing. I do thank you so much for the glimpse into your heart and relationship and the privilege to lift you in prayer. May you somehow find and embrace that peace that passes all understanding.

  11. Todd,
    This breaks my heart because I went through the exact same thing. They told me on day one of hospice, “Bryan would be more comfortable in a hospital bed”. We both laughed. “He’s 33! he was at a movie with me not a few days before. We travel to Boston for clinical trials, he doesn’t need a hospital bed he needs OUR bed.” We thought the nurses just didn’t “get him”. Not four days later we called for a hospital bed. Bryan resisted by reclining in an motorized arm chair for two more days while the hospital bed sat there empty. When he finally got him in it, I pushed both beds together and slept with one arm and one leg over the railing for 30 days. I longed to share a bed with him but once he was in it, he was much better off and so were we. Its so hard to switch gears to comfort care, especially when it moves so quickly and you’ve been so focused on treatment. Please do hospice your way, when you are ready. Don’t let anyone rush you or Karyn through the motions as each hospice situation is unique. Bryan and I refused a catheter the entire time, it wasn’t the smartest move but it was the only control he had so he stuck to his guns despite the nurses requests. it doesn’t have to be perfect, it just has to be as comfortable for you and for her as it can possibly be.

    Take care of yourself, lean on the people and nurses around you and sleep whenever you can.

    I’m sure you have so many people around you for support. But if you ever want to speak to someone who saw what you are seeing and lived how you are living, feel free to email me anytime day or night.

  12. A few months ago, you told us Karyn was asking what “all of us readers” get from this blog. This post is a perfect example.

    I got a reminder that sharing a marital bed with someone is a gift and a privilege; not something to be taken lightly. I got a renewed appreciation for every night my husband is in bed with me; and for the rare nights we are apart, an appreciation that it’s temporary.

    Every day now I make the bed in the morning with love, so that all day long it’s looking wonderful, and in the evening it’s neat & inviting. I slide into bed, reach for my husband’s hand, and rejoice that there are no metal rails between us. And I send my gratitude upwards & outwards, hoping that you family realizes that others are loving these moments all the more in honor of you & Karyn.

    I also wanted to let you know how much hospice helped me, my sister, my family 3 years ago when my sister passed. She loved her own bed, but when we finally got the hospital bed, with its magical air mattress that inflated/deflated random areas to prevent pressure spots, and its infinite adjustments, my sister smiled and said “Thank you – it’s soooo comfortable!”

    Bless you for having the guts to do the right thing for Karyn, even when you are in such pain. Much Love to all of you!

  13. Todd, I was hoping “this day” might not come at all. My stomach feels hollow and my heart feels full. I can still see Karyn’s smile and her friendly eyes; I am glad to have known her and to be inspired by her courage and humor and force in these last years of her life. Remarkable indeed.

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