Today was my first day back at work. It was one of those kind when the boss says nothing right and everything wrong. For instance, observing that my mother's quality of life is so poor that she'd be better off gone. You see, that's not something anyone else has a right to say. Sure, I can. My sisters might. But please, don't tell me that unless you're with me on the journey. To make matters worse, I think she tried to be empathetic by talking about how her own mother is driving her nuts. Her mothers is in her 80's and lives with my boss. She's had a small cancer remvoed from her leg and her vision in one of her eyes is greatly diminished. I couldn't help but finally say thank goodness for you that she can still move on her own and has vision. For Pete's sake, either one of those two life functions is monumental.
It had been planned for me to take my dad to the doc today and then on to another clinic for blood work. When I arrived to pick him up and help load my mother so she could go along, nobody answered the door. I knocked and rang the bell. All the while I was thinking how much I needed to do at work. I called the house number and it rang. I called my dad's cell and he answered as nonchalantly as ever saying they were at the doctor's office. I was stupefied. So I got in my car and headed over to the doc. They'd arrived nearly an hour early via my mom's brother. This brother hates established medicine and was a little vocal with"hell" and "shit" and such. He thinks most doctors are quacks and over prescribe meds. But my parents were in a jovial tone with him. He asked what I was doing there and I told him we always go to the appointments with them. I had my clipboard with all my dad's meds on it, his current medical issues, etc. I also had the sheet for his labwork orders.
Although my uncle was a dear for helping out, I got the impression I was the enemy. My parents started talking about ordering drugs from Canada, dad skipping his dose for a month or two until they got it worked out, and so on. This uncle wasn't aware that they were seeing a cardiologist for congestive heart failure but that he also needed the lab work for his pulmonologist who is treating his COPD and enphysemia as well as the infectious disease doc for the aspergilleosis. For God's sake, if it was just 1 doctor we wouldn't be exhausted!
I found it odd that as we sat in the waiting room, the 3 of them took to discussing the ills of others. This person has it so bad. That person is in poor health. I finally chimed in that if they truth was told, Dad was in at least as poor shape as the ones they were talking about. Oh no, they all added, that just wasn't the case.
I wanted to scream and cry. I'd watched my dad fight for his life and over these last 94 days, nearly 20 days of it was on ventilators and life support and over half of it in the hospital. What don't they get? Mom can't see so I give her a little slack. But my uncle? He saw my dad on the vent. I remember the frightening things Dad told me during his ICU psychosis. Maybe they are just trying to create a sensation of others having it worse. I don't know but I am tired of it.
When we were called back to the exam room, my parents were a cute old couple. The good doc told my dad that his peptides were up indicating he'd had a heart "event" while he was on the vent and probably had another "event" the week before last. He said that Dad's hear is still at 45% output but that is the same as it was in 2005. He told Dad that he would not survive any procedure to treat the leaky valve and that the lungs are the real issue. He looked at me and talked about Dad having been on the vent and in ICU so much and that "you've all been through so much" and how he wishes he could wave a magic wand and correct it all. How sweet -- someone finally acknowledged my sisters and me. He told Dad and Mom that both of them should be thankful for each day they wake up and live it to the fullest as best they can. He indicated the situation was grim. He told my dad that he had no restrictions other than avoiding extreme temperatures. I asked about pushing Mom up/down the ramp. The Doc said absolutely not because the would trigger a heart event. He then said anything that causes shortness of breath must be avoided.
The doc talked about Canadian meds. He's still licensed in Canada so can legally dispense such but said the exchange rate is no longer favorable enough to make it worthwhile AND that this is such a delicate issue (aspergilliosis) that it must be followed with lab work monthly. Before we left, Dad gave the doc a tin of high end holiday candy and nuts. It was so sweet. My parents always do that for the docs. Even this year when money is tight and minds are fleeting, they remembered the gifts for the docs.
We made the follow up appointments. I realized we are taking mom to the doctor every week for the next 4 weeks and then dad the 2 weeks that follow that.
Because my uncle had ridden along, we now had to go back to the house to drop him off and dropped Mom off as well. Then I took Dad to the lab for his bloodwork. We talked to Dr. A's nurse about the VFend refill as well as the Pfizer RSVP program. She's to call me tomorrow with updates. As we were leaving, Dad remarked how nice it was to be literally outside instead of in the house. Poor thing. He's so busy caring for mom and too weak to venture far. Pop didn't remember any of our plans for the day -- he's taken to keeping a paper calendar in his pocket. As he got in the car with his large O2 tank, I noticed he had a flashlight in his hip pocket. My poor Pop. I wonder what he thought he needed that for.
Thank you, God, for giving me Lori. When either of us melts we can count on the other to lift us up. And she was doing lots of heavy lifting today. She talked to me the whole way back to work and then called me when I was back at my office to talk some more. I had to stay late to make up the work I'd missed. But another day is in the record books. And Kris won't have to hear any of this. Her burden begins when she returns "home" from work each day. I hope she has a better night than I did day.
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