So this week, my husband was choking and lost consciousness. We were eating dinner. It was his last bite. Usually if he has any trouble swallowing, I help him to stand up and just straightening up seems to clear things. This time I got him standing but he stopped breathing and collapsed on me. I had to lower him to his chair then drag him from the chair to the floor without dropping him or hitting his head on the tiles.
By the time I got him to the floor he was gray. I tried the Heimlich first and turned him to his side in case anything came up. Then I turned him to his back again and did some chest compressions in the hopes he’d start breathing.
All the while this was going on, I was wondering whether I should be doing it because he has a DNR – Do Not Resuscitate. Thankfully he did start breathing!
The next morning he was choking on his pills but at least didn’t lose consciousness. So scary!
A few hours later he wanted to go to our Off-Key Chorale, a group that was formed by the Neurochallenge Foundation as breathing/singing therapy. It’s for patients and caregivers but also has a few good singer volunteers so we sound quite wonderful, all things considered.
So death and life within less than 24 hours.
On the way to singing, I told him he was really scaring me with these choking episodes and to cut it out! He said he was scaring himself. His speech is difficult to hear at best of times but almost impossible to hear in the wheelchair van, which is very noisy. I pursued it when we got home.
What was scaring him? I asked. He said it felt like he was dying in that moment. Panicking that there’s nothing you can do about it in the moments before you lose consciousness.
I told him how I wondered about his DNR and asked what he wanted me to do in those moments? Should I just leave him be?
He said “I’m not trying to hurry this along. Do what you can.” Then something like “don’t do more.”
So a couple times I’ve confirmed with him that what he wants is for me to try but not to call 911.
As I’ve thought about it, a DNR is so that if you have something awful happened that stops your breathing, your heart – like a heart attack, or a stroke – you don’t want extreme measures to bring you back. You don’t want to be brought back in even worse condition than you already are. You don’t want things done to you that will have negative consequences, like broken ribs.
Choking and Heimlich isn’t quite the same, is it? If I can help him clear his airways, if I can help him start breathing again, I won’t have caused negative consequences and choking by itself doesn’t have long term negative impacts (like a stroke, for example). I’m not strong enough to do chest compressions that would break his rib, for example. His bones have to be mighty strong if he’s fallen about 300 times and never broken anything.
So I feel reassured that I understand his wishes.
But it’s still been quite a tough week of rapidly changing emotions. It’s not a roller coaster, it’s more like jumping off a cliff attached to a bungee cord (not that I’ve ever done that – or will ever do that!)
I’m just going to hold onto a quote I read from another caregiver. “Never, ever let the fear of tomorrow steal a single moment of the joy today.” I would add – never let the pain of yesterday steal a moment of joy today.
I’m also not going to give him tiny cut up pieces of green beans ever again! Who cares if he gets his vegetables???!!!
I’ve been feeling off since we returned from 
We came back from our vacation a day early and now I’m caregiving at home again. Transitions are hard!
The best day was my birthday. He had a wonderful and thoughtful card and gift for me. We spent time sitting on the balcony enjoying the breeze. I took a nap. We even went out to dinner at a restaurant adjacent to our hotel. It was the only meal we ate out. He didn’t really eat much, and didn’t even drink half of his Mai Tai. But we were clean, dressed, and out together. Like normal people. We even looked like normal people. I had the waiter take our picture.
What is a caregiver vacation? Vacation: a period of suspension of work, study, or other activity, usually used for rest, recreation, or travel. Good travel, but where’s the rest and relaxation???
rhythmic noise. The sky is huge – colors and textures ever-changing from blue with huge white puffy cotton ball clouds on the horizon to dark threatening clouds. Even a long descending black waterspout, stirring up the water to white froth where it met the surface.
Facing the east, we see morning sun breaking the horizon, ascending out of the ocean. We also benefit from prevailing easterly winds, allowing us to sit on the balcony once the sun rises enough that we are in shade, even though the temperature is high and the air is heavy with humidity.
Late yesterday I asked how he was feeling, from 1-10. He said a 7. He hasn’t been higher than a 5 and mostly 4’s in a very long time. I asked how come and he waved his arm toward the ocean. We were sitting on the balcony. “All this,” he said. Pretty cool.