When past and present join

One of the clearest memories of the day Linda died  from pulmonary fibrosis occurred sometime mid-morning. At 6am Linda was telling us movie trivia (a specialty. I really miss all the quirky facts she stored. I should have listened better!). She'd only been in a hospital bed for a week. Before that she was up and moving. Not well- but moving. Determined. Then shazam! 7 days and she was dying.

She'd gone from eating 7 days before (not to mention playing, and cheating at, poker), to not eating, a catheter, bed baths, bed bound... then came Friday. Good Friday, actually. At about 10am she stopped responding at all. Not even to me. Her eyes no longer responded. Casper put her arm around my shoulders, carefully, and quietly said "You can turn the oxygen off now. It's not helping her anymore. And she hated that mask."

I knew Linda was dying. We'd talked about it all week. I knew the clinical signs. But... turn off the O2? Two days before we had to take off her wedding rings as her heart failed and her body swelled. That was painful to watch and absorb. Who thinks about those moments in life? But the oxygen? That was her lifeline.

And yet... it made sense. She had almost no blood pressure. She had said her goodbyes. She couldn't absorb it anyway. And she really did hate that mask. Nobody likes running O2 anyway. Masks remove you from the world around you. They stifle you even as they flood you with air. They make your face sweat (did you know that?) and your nose dry out, not to mention your mouth. Nobody can hear you talk either.

But turn it off? And so I did. And I watched. No reaction. Just my own. There was an odd silence even in a house filled with people and kids and pool sounds. We'd had an oxygen concentrator running for years. We'd dragged tanks everywhere we went. The last trip to Las Vegas the year before we had so many tanks I was afraid we would blow up if a truck hit us on the Baker Grade. And then suddenly- silence. The concentrator was off. Forever. Two hours later Linda died in my arms. Peacefully.

Yesterday the oxygen concentrator came out to be used for the first time for Casper. It was delivered when she was placed on hospice service, but that was only a month ago. I was relatively sure it would be a while before it actually had to go to work. I stuck it on our closet (closets are for clothes, O2 concentrators, blankets, shower chairs when not in use, dog dress up outfits.... not for people. If I ever trip and fall in ours I will never be seen again.)

And then Casper started breathing differently. I was up all night. I hate apnea episodes. I have asthma, and it makes me feel short of breath to watch apnea. I can't stand it. Gurgling? So not okay. But Parkinson's makes your brain forget to swallow, and fluid builds up on your vocal chords. Atropine makes it go away, but now I have to skinny out of bed because our bed is shoved against a wall to make room for the hospital bed that came yesterday. And Jill "skinnying" is quite a feat. My Girlfriends who do Ironman tricks for fun could do it without thinking. Me- not so much. Then there's the candle on the wall- skinny then duck then wrap around the bed post and don't stub your toe at 3am. So much for sleep.

The next day- was that only yesterday?- I was in Hemet, an hour away on a good day. The phone rang when I was five minutes away from a patient's home to meet a nurse for an appointment we'd waited to do together for two weeks. Jay called. Casper was not breathing well. The car and I pulled a U turn somewhere mildly illegal and I called our nurse, using my access to her cell number work for me while destroying her afternoon schedule. I hoped she wasn't cursing that she was Casper's nurse under her breath and thinking I was going to be a problem child.

"I'm not sure what's wrong. Can you come? Please?" I called the nurse I was supposed to meet. "Can you forgive me? I'll make it up to you. Promise." By the time I got home Casper's nurse was on the bed checking her, and the abandoned nurse had called back and offered to drive from Hemet to Riverside at the end of her long day to offer support. You know what's awesome about hospice? The nurses. The other support staff. They care.

And so it was that Casper had sounds that didn't belong in her lungs that come from too much inactivity and that are often a part of end stage Parkinson's and Lewy Body Disease. It was that she needed oxygen for some support, and a nebulizer, and better support- that she refused, adamantly- in bed. And that last night she was disoriented, confused and angry, and today was was as well all day. And that she is now using the oxygen she hated this morning as I type at 8PM. And so it is that, once again, an O2 concentrator is humming in this bedroom. And that memories of not long ago have joined with today. Only this time I don't have Casper the nurse helping me keep it together. I have Casper my wife wanting to hold my hand as we cope as best we can when she know what's going on. And, once again, Fuzzy is in the middle of it. Just like before.