That was today’s phrase the doctor said. This, what we’re dealing with now, is chronic, long term .. not going away. “It will be like this the rest of his life”
You can’t fix .. treat … or do anything but watch very carefully that pneumonia’s like the one in June crop up in that very inflamed lung.
You can’t do anything but watch the 2, 3 or 4 hour coughing jags …
Tonight one cough caused his entire body to spasm (most do, but this was particularly forceful) and he went pale and had a hard time focusing .. then a sharp pain … right where the spinal cord is displaced. A rock dropped like a bomb to my stomach …
I’ve noticed some odd cognitive issues … things he should remember … things that should not be hard to explain but become impossible … telling me the same thing 4 to 5 times then getting mad when I say he told me already … and furious when I insist he has. It wasn’t till tonight that it occurred he may not be remember telling me … I need to think about this … is this oxygen issue? Is this just fatigue from dealing with so much? Is this a totally separate issue that has nothing to do with what we’ve been dealing with? Is this just a stress response? I need to pay attention to when it’s happening … it could be sign of infection impending in those fluid filled lungs …
It is far different to know that this was going to happen than walking it out in reality.
Discussion with pulmo again, turned to me .. and my self care …and coping. He suggested that I look at some of the information that is given to families with long term fatal illnesses like Alzheimer .. (I do not think the memory is Alzheimer .. in fact, it’s an issue that hasn’t been mentioned to a single doctor .. his point was .. they have good coping resources for long term unpredictable degenerative issues) Parkinson foundation … there is nothing like Don … so I need to look at illnesses who share characteristics of “unpredictability” “degeneration” “eventual terminal”
He had a few doc appts last week and his mother became frustrated with me. In her whiniest, most “poor me” “dejected voice’ she could muster she said “I don’t know why you insist on making him see all these doctors and do all these things. They tried to force me to do all sorts of appointments, surgeries and physical therapy with him when he was little and I simply would not let them insist his illness got to dictate my life. And look at him, I was right.”
It took all my self control to not say “Had you done the surgeries and allowed the rod to be placed in his back when he was 6 (it was suggested but she refused because the physical rehab would take too long), we would not be here. Had you taken him to the nutritionist and Physical therapist team when he was first removed from the iron lung, his muscle atrophy might not have been as severe … and he might weigh more than 92 lbs. If you had done all those things they tried to make you do then .. we would not be HERE NOW.” But I didn’t. I simply responded with “we all have to do what we think is right.”
I start school in 9 days … and I’m scared .. I leave him alone from 4:30 to 10 on 2 different nights a week. I’m scared I’ll be too distracted to concentrate on my studies. I’m also kind of relieved, no, very relieved, to have something else to focus on other than “Is someday really here?” “Is my husband going to die before I finish my degree? and if so .. which degree?” And a few moments of the occasional panic of “will he make it to our 25th anniversary in December.” (this last one is pure panic .. no reason today to feel he won’t … he will probably see me graduate in May with my Bachelors (though Dr’s will not promise me) But the master’s that is 3 years later is seriously in question .. and PhD a couple of years later .. the doctors just frown and say “I’m sorry”