Choking, Do Not Resuscitate, Green Beans, and Joy

Dark and Light - Choking and Joy in 24 hoursSo 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???!!!


Caregiver in Suspended Animation

Original painting of Blue Heron in suspended animation in the reedsI’ve been feeling off since we returned from vacation – in sort of suspended animation.  I can’t seem to recapture my resilience.

We had the breathing crisis in August which felt like the end for awhile.  Then the move into hospice, which also felt like the end.   My anxiety was high.  I was in action.

Then the recovery of some strength and better breathing and almost back to pre-crisis (except for random episodes of weird symptoms).  Then things seemed stable enough for me to manage alone with him, and to plan the vacation.  Then vacation (with it’s own mini-crises).  Lots of action.

Now we’re back, but where are we?  Are we near the end?  We’re still under hospice care.

Are we proceeding with our lives?  We went to a Selby Gardens outdoor concert last Sunday and to the beach for sunset on Thursday.

I asked Larry if he thought being in hospice was a psychological disadvantage that outweighs the benefits?  After all, they know nothing about his disease.  They’re good with the equipment we asked for, good with sending meds, good for the CNA help.  But medically they just shake their heads when I mention a weird symptom.  So does being in hospice make us feel closer to death?

He said “No, all positive.”

In some ways, I just feel like I’m always waiting.  Like now.  Waiting for him to wake up so I can help him.  Then I’ll wait for him to finish on the toilet so I can help him.  Then I’ll wait for him to finish eating breakfast so I can help him with his breathing treatments.  And always waiting for the next shoe to drop.  I can’t wait for him to get better.  I don’t want to wait for him to get worse.  I can’t do anything about any of it.  I’m in suspended animation.

I know, I know.  I need to stay in the present.  Right now I’m just finding it hard.

Just the other day I looked out a window and saw a couple doing their morning walk together.  Just a simple walk.  I was SO jealous!

His breathing has been gurgly recently.  It’s such torture to listen to.  I asked him if it bummed him out that it had gotten worse again.  He shrugged and said “not really – it’s all just part of the disease.”  He has such amazing equanimity.

We weighed him.  He was 168 pounds.  Later he joked to me.  “Last time I weighed myself I was 190.  I missed the 80’s and 70’s.”  He takes it in stride.  I see a gaunt face, a body wasting.  (Although his gaunt face is actually making him look very sexy.)

I used to go at 120%.  I never had time for anything.  Now I have lots of time, in some ways, bits of time here and there, unknown lengths of time.  It’s hard to start anything when you don’t know how much time you’ll have.  Even a cup of coffee.

So here I sit.  A caregiver in suspended animation.  Looking for my resilience.


Caregiving at Home Again

Photo of all my lists for vacationWe came back from our vacation a day early and now I’m caregiving at home again.  Transitions are hard!

Vacation was a lot of work, a lot of lists, a lot of packing and unpacking. We had our challenges that I shared in a previous post .  On balance, I’m glad we went.

Photo of us looking normal at my birthday dinnerThe 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.

Now, back to caregiving at home, I’m back to real life.  It feels good to be in our own home, with all the accommodations to his needs we have here.  I have house stuff to attend to, things to fix and catch up with.  But I feel out of place.  Out of sinc.  Like I can’t get back in step in my own life again.

He’s had some weird symptoms – perhaps blood pressure drops – that make him seem to disappear.  His eyes open wide and fixate on something far away and he doesn’t respond when I call to him.   I tense up and then try to breathe, wondering what to do, if anything, or  if it’s significant, is he about to die?  Then he seems to return to his body and refocuses his eyes.

The scary moments on vacation along with these weird symptoms and his labored breathing and his post travel GI problems make it hard to resume life and just carry on.  Yet, what’s the choice?

I’ll take the good moments, and try not to fixate on the bad.  I can’t fix them so why worry about them?  I’ll do what I can to get my feet back under me.

Today I took the dog for a long walk down to the water and I took an early yoga class just starting up again after the summer in our community clubhouse.  (I was up at 5 AM with Larry’s problems.  He went back to sleep.)  I was grateful to see friends at yoga.  When I got back the hospice CNA came over to help Larry with his shower.  I was grateful she helped me to change the sheets on the bed and offered to help every week.

Research shows that exercise and gratitude are good for your happiness set point.

Hopefully I just increased mine so I can be happier caregiving at home!

A Caregiver Vacation

Original painting of ocean and clouds painted on our caregiver vacationWhat 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???

Just three hours away  from home, but we have different walls, different views, different noises and smells.

The waves roll in below us, hypnotic in their unceasing movement and Photo of waterspoutrhythmic 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.

Photo of a caregiver vacation sunriseFacing 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.

I’ve had a few moments to paint the changing scenery and even took a jacuzzi while Larry watched football.

We’ve had some gliches.  I expected some bumps, just not the ones we’ve had.  Another lesson in letting go of expectations.

I realize why I don’t ever want to live in a high rise.  I have to wait for an elevator, and the stops for other floors, then walk through several courtyards to get out to walk the dog.  Four times a day.  He loves all the strange smells but his walks takes forever.

There was the cranky admissions hospice nurse who hated the dog, the problems of hospice delivery people finding and getting into this building which is on top of a public parking garage.  There was the frozen and leaking refrigerator, and the dog peeing on the bed.  There was the loud and awful karaoke the first night echoing in the public courtyard at ground level.

And then there were Larry’s problems.   The bad part of a caregiver vacation.

His bipap machine for sleep apnea has long tubing which is humidified.  Water kept condensing in it, making it gurgle and waking Larry up, which woke me up.  After two nights of this I had to call our home hospice nurse to call the respiratory therapist who called me to help me recalibrate it.  Apparently being by the ocean provided enough humidity.

The second night he choked on dinner.  Turned gray, and passed out, smacking his head on the table as he fell over.   I had to drag him to the floor (hitting his head again) to do Heimlich and chest compressions yelling “I don’t care about your DNR, you’re not dying on our vacation!!!”   He finally started breathing after what seemed like an eternity.  I called the front desk to help get him back in his wheelchair and hospice to come check him out.  He had no recollection of it and was joking and asked for dessert. I was a basket case.

The first few days his breathing was a lot better than home.  We figured it was getting away from the airborne toxins of the red tide.  The last two days his breathing has gotten worse again.  I heard in the elevator that the red tide has migrated around to this coast with the ocean currents.  Really??? It followed us??? I was wondering why I had been coughing on the dog walks.

Original painting of flowers I brought on vacation

The last two nights his breathing has been so loud and shallow even with the bipap machine and oxygen on, and he’s had full body twitching. Is he not getting enough oxygen?  I checked the hose for kinks or leaks.  Are the bipap machine settings off?  Is he dying?  I couldn’t sleep with worry, the noise, and the shaking of the bed.  Last night at 1:30 AM I called the respiratory therapist and asked for help.  She couldn’t offer any solutions but she was a friendly voice in the darkness.  I finally gave him a small dose of morphine.  I wanted to give it to myself.  I listened to a meditation on my computer instead.

View from our balcony on vacationLate 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.

He’s still sleeping this morning.  It’s my birthday.  I bought myself a chocolate croissant and coffee when I walked the dog.  This is a caregiver vacation.  It’s not restful, but it’s still vacation.