Notes from the Home - March 19, 2015

     Al has looked healthier this week than he has in a month. Whether he is or not is hard to say, but he has the aura of a livelier, more alert man. He has been coughing up blood once in a while but has pooh-poohed the idea of seeing a doctor or going to the hospital. He says he's "ready to get out of here." Then again, he's been saying that ever since I met him, nearly three years ago.
    The last six months have been tough on him. When people ask Al about his life, he invariably tells them, "I was a nomad. I've been all over the world. It's been a great life." Last night after dinner, we were talking to Amy and Myka, two of the servers, and Al was complaining about America's sexual mores. "We have all these hang-ups. They don't have them in other countries. I've been around the world three times, and I tried it all. Now look at me, I haven't had an erection in twenty-five years."
     While Al often complains about his loss of sexual prowess, these days it is his dwindling freedom that bothers him most. He gave his car away several months ago. Life without a car has been hard on him. If he wants to go to the store, he has to find someone to take him. This is rough on him, and rougher on the person who takes him. Despite his oft expressed fear that he would kill himself or somebody else if he kept driving, Al has yet to find anyone who drives as well as he does. And he tells his drivers that while they're taking him to where he wants to go. And he frequently shares stories of his chauffeurs' ineptitude at dinner.
     When Al was still driving, he and Ken went to lunch almost every day. Now they go once, maybe twice a week, and even that stresses Al because Ken's doing the driving. "He's got dementia - bad. He doesn't know what's going on, he doesn't watch what other people are doing. He's going to kill us both."
     Hospice is also a thorn in his side. With hospice involved, Al no longer has to go to the drug store to get his medications. Hospice does it for him. He's still getting the hydrocodone and marinol, along with the other stuff. But someone else is going to the drug store for him. Al was a frequent visitor to the local CVS and had gotten to know the pharmacists. He enjoyed going and talking to them; his trips there were as much social as medical.
     At dinner last night, Al said no one from hospice had been up to see him in a couple days. "God damn hospice. They're supposed to check up on me. What the hell are they doing?" A few nights earlier, Al told us, "Some lady from hospice came to see me this morning. She didn't know what the hell she was talking about. I told her to get the hell out of my apartment and to stay the hell away."
     Two weeks ago, as the weather started to warm up, Al turned on his air conditioner. Nothing happened. He decided the thermostat was the problem and put it a work order. James went to take care of the problem and discovered a bad breaker was the culprit. "God damn it, James, it's the thermostat. You've got to put in a new thermostat." It was an argument James knew he was bound to lose, and he put in a new thermostat along with a new breaker. At dinner that night, Al spent fifteen minutes telling us how stupid James is.

     "I love coffee, I love tea, I love java, and it loves me." I just wished it had loved me more. There is an article on the Multiple Sclerosis News Today website, titled "Caffeine in Coffee Found to Reduce Multiple Sclerosis Risk." http://multiplesclerosisnewstoday.com/2015/03/03/caffeine-in-coffee-found-to-reduce-multiple-sclerosis-risk/ Now I've consumed more than my fair share of coffee over the years, and I've never asked for decaf in my life. Mom would roll over in her grave if I did.
     One of the researchers did say they need to study the effect of caffeine on relapses and long-term disability with MS. In the interest of science, I will continue my love affair with java. Although, while I enjoy coffee as much as I ever did, I don't drink nearly as much. My Mr. Coffee makes four five-ounce cups, or twenty ounces, which is two and a half cups for those using a measuring cup, or about one and a half cups of my coffee mug. I make two pots of coffee a day, one in the morning and another in the afternoon. Two or three mornings a week, I have one cup, and the rest sits on the burner until it is no longer potable.
     In the afternoon, I like to make a pot of coffee and drink it as I sit reading with my feet up. That is my intent. What usually happens: I make a pot of coffee, pour a cup of coffee, put my feet up on the hassock, open the book, read a few paragraphs, take a sip or two of the coffee, fall asleep and wake up just in time to get ready for dinner. An after-dinner cup of coffee is out of the question. Whether because of changes in my system, or just because I don't get much in the way of physical activity, coffee after five in the afternoon is apt to keep me up until five in the morning, Nonetheless, the cup that helps me wake up in the morning, and the cup that may or may not put me to sleep in the afternoon, are always among the highlights of my day.

     It is Thursday morning and, as promised, the guy from Convalescent Care rode off in my wheelchair. He is going to replace the tires on the drive wheels. When Convalescent Care called yesterday to arrange the the pickup, she said it would take an hour or two. As the fellow left in the chair, he said, "Be back shortly." I feel like a kid on Christmas morning. I haven't been able to get out and ride around for nearly a month. It rained most of the night, and it still looks like rain, but I'm hoping when the guy gets back, the weather will permit at least a short ride around the grounds.

     One of my poems appears on the Life In Spite of MS website. http://www.life-in-spite-of-ms.com/at-four-am.html

    
     
     

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