I pick on husband quite a lot in this blog. But, this morning there will be no picking as he has received yet more dire news. As if twenty years of COPD was not enough!
We were hiking, out east, when I came down with flu. It mostly consisted of a bad headache and exhaustion, but it was enough to send us back home again. I drove most of the way, from the eastern coast to Indiana, as I recovered and he had become ill.
Round after round of doctors followed for years after, as one clinic/doctor after another eliminated diseases. It was not until we found Jacob Bitran, M.D., who was, at that time, with the University of Chicago, that Roy began to receive help. Modern medicine has kept him alive since.
He smoked for one month total in his whole life, but his father was a smoker and he came into contact with so many chemicals, over a sixteen year period at LTV Steel, that the doctor at Mayo threw the list across the desk and said that there was no telling what caused the COPD as any number of the many chemicals he came into contract with could have done this to his lungs.
He tried to work for years, after he was diagnosed. On the days he worked by the chrome line, he would miss two to three days of work after. Some days, he would drive all the way to East Chicago, from our home between Griffith and Merrillville; he would get out of the car and walk to the guard shack, where he could rest; then he would walk back to the car, rest and come home again. It finally got to the point where he felt he just could not do this to his co-workers any longer, as they were working harder to make up for work he could not do. The mill was wonderful to him and allowed him to keep his job for much longer than any small business owner could have done.
On the outside, if you did not work by him or live with him, he looked perfectly normal. That is unless you were wearing perfume or some such. To this day, people will sometimes hint to me that there is nothing wrong with him and he is just lazy. They usually only do that one time, as I let them know what life is like for this fifty-seven year old man who now looks like he is nearing nintey. Restaurants always seat him with my mother instead of me, and when we get the bill, they have given him a senior discount.
One problem is that his body produces too many histamines and he is allergic to just about everything: humidity, perfumes, chemicals, cleaning supplies, new carpeting, some plants, lacquers, make-ups, laundry soaps, shampoos. You name it and he will shut down. He will take one breath of air and it will be trapped, like a balloon with no opening/outlet. His airways close up and there is no way to get the air out.
He has had to leave restaurants, in the middle of meals and run out of theatres because of perfume.
So, when he went to the doctor and received four more medications, the other day, because one lung was more congested than normal, it was ‘business as usual’ for us. Yes, I watch the decline. Do I know where that decline ends? No. It is not something I think about. When he was diagnosed, the disease gave a person twenty years tops. Medications have expanded that. You just live each day.
I may get very frustrated, but I make sure he takes his medication and I make the doctor’s appointments, even when he does not want to go. I watch the roof leak, and the pipes leak and the water heater that is failing and I do not harp or nag as, that is not my way. As a caregiver of my mother and disabled husband, I vent to you guys. And, I thank you all for listening.
There have just been too many days like this lately, and it’s hard for me to find a way to make this kind of news humorous. Master’s Daughter would have you in stitches at this point.
Another blow struck yesterday as the ophthalmologist told Roy he has Macular Degeneration. One eye already has an expanding blurred spot, but both eyes have dead tissue in the Macular and in the one eye, the blood vessels are all straight, unlike the wavy lines they should have. There is no good prognosis here, only a slowing of the eventual blindness he will have. Apparently, the premature aging of his body, due to the COPD, is damaging the blood vessels. In six months the test will be repeated and we will have more of an idea how fast it is progressing.
On the plus side, it is not his hearing. He has always said he would rather lose his sight than his hearing. He loves music more than anything.