Tuesday, January 5, 2016

Notes from the Home - January 5, 2016

Al has not had dinner in the dining room for three weeks, maybe a month. The problem is his legs. He is retaining liquids; his feet are beginning to look like the Goodyear Blimp and his legs resemble huge over-stuffed sausages. The last time he came down to dinner, he struggled, often unsuccessfully, to stay awake. During those few moments when he was awake and aware, he told us his knees were killing him.

I followed him to his apartment that night. Fortunately, he made it without incident; I wouldn’t have been much help had he fallen. “I think I’m going to have a movement,” he said, as he went in the bathroom. Jim came by a few minutes later to drop off two elastic sleeves. He said there was copper in the material, and Al should pull them up over his knees, and the sleeves would ease the pain. When Al came out of the bathroom, he went directly to bed. I put the sleeves on the table, and once Al got covered up and comfortable, I went to my apartment and watched Jeopardy.

The next morning, as I wheeled my way into Al’s apartment, he waved the sleeves at me and asked, “What the hell are these goddamn things?” I told him what Jim had told me. “Do they work?” “Well, Jim said they do?” “What do you want me to do?” I told him to stick his foot through the sleeve and pull it up so it covered the knee. For the next ten minutes, Al repeatedly asked those questions, and I kept giving him the same answers. Eventually, he slipped his bare right foot through one of the sleeves. He managed to get it halfway up his swollen lower leg before it would go no further. He looked at me as if he was about to say, “This is another fine mess you’ve gotten us into, Ollie.” Instead he said, “What the fuck do I do now? Shit.” I suggested he take it off. He did.

A few minutes passed before I got Al’s oxygen tube and told him he ought to put it on. He stared at it for a while, located the part that fits in his nostrils, stared at that a few more minutes and said, “Am I supposed to stick this up my nose? Or do I stick it up my ass? Tom, I ought to shove this fucking thing up your ass.” He stared at the “fucking thing” for a minute or two, and then slipped it on. Not having to fight quite so hard to breath didn’t greatly improve his mood, but it did help.

Al has had some better days, too. Some days he almost seems like his old self. Other days, though, he says he doesn’t know where he is, or what’s going on, or why he’s still here. This morning, he came very close to crying. “Tom, I can’t even think anymore. What’s happening to me?” he asked several times.

There are times I when wonder if I’m cut out to be Al’s confidant. Many of his struggles are also my struggles. “I can’t hardly move my legs anymore,” he’ll say. “Neither can I,” I say to myself.

“My balance is so damn bad, every time I stand up I’m sure I’m going to fall flat on my fucking face,” he says. And I think, “I’ve felt that way for almost ten years.”

“I’m so damn tired. All I want to do is crawl back in bed and sleep,” he’ll say. “I’m twenty-four years younger than you, and there are way, way too many days when all I want to do is crawl back in bed,” I mumble. “What did you say?” Al asks. “Nothing. Just clearing my throat.”

“All I do is rot away in this fucking chair the whole damn day,” he says. “Me, too.” “What do we do now?” Al asks. “I don’t know.”

Many times I have left Al’s apartment feeling down about my situation. It is hard to believe I’ve boosted Al’s mood, when mine will require some heavy lifting to get it back where it should be. Then I wonder if I’m being whiney, or am I just being honest.

Hell if I know.

Friday, January 1, 2016

Notes from the Home - January 1, 2016

I slept through Christmas. No, really, I slept through Christmas. Honest. Well, most of it anyway. On Christmas Eve I went to bed somewhere between nine and ten. At four-thirty, my bladder roused me. After tending to the anxious urinary tract, I thought, “Might as well get dressed and get going.” So, I put on my socks. Then I thought, “Maybe a little more sleep will do me good.” With that, I crawled back under covers, thinking I’d up by six-thirty, seven at the latest.

Yeah, right. It was nine-thirty when I reluctantly stirred, and then only because that spoiled brat of a bladder was resorting to its usual attention-getting behaviors. I really wasn’t in the mood to get up and cater to its whims, but I was afraid if I didn’t it would get angry and make a mess. Off to the bathroom I went to placate it. When it finished pissing around, I leaned back in the wheelchair and immediately fell asleep.

A few minutes before eleven, the phone startled me. Opening my eyes and finding myself still in the bathroom was even more startling. It was Russ on the phone, and after the obligatory Merry Christmases, he said he’d be over to collect me for Christmas dinner with him and Karen in an hour or two. “Two hours would be better,” I told him. “That’s OK,” he said. “I’ll be there around one.”

I sat on the side of the bed to get dressed. But, I didn’t. I sat a few minutes, feeling as if I might vomit. But, I didn’t. “Well,” I thought, “better lie down for a few minutes. No hurry; I’ve got two hours.” I stretched out on the bed and fell asleep. At twenty-of-one, the phone rang. “Merry Christmas,” a jolly Beth said. “Did I catch you at a good time?” “You woke me up,” I told her. “I need to get ready to go over to Russ and Karen’s.” “No problem. I’ll call you tomorrow.” But, I didn’t get ready to go visiting. Instead, I slept until Russ called, ten minutes later. “I’ll be over to get you in few minutes,” he said. I hemmed, then I hawed, and then I told him I wasn’t ready, didn’t know when I’d be ready, and maybe I’d best stay home. “No problem,” he said. “We’ll do it tomorrow.” Delighted to have such understanding offspring, I slept until nearly three o’clock before finally getting my lazy butt out of bed.

I was up before the sun on Boxing Day. At one that afternoon, Russ rolled me into their apartment, and Molly – either a toy or miniature dachshund, I’m not sure which – greeted me with bubbling exuberance, jumping up on my lap and giving me sloppy dog kisses all over my face. She does this every time I visit, because I’m a soft touch and generously share my dinner with her. Karen had prepared a wonderful dinner of ham, mash potatoes, and green beans, with the best cheesecake ever for dessert. But as Russ pushed me up to the table, Karen said, “Don’t give Molly any ham; it makes her sick.” A few bite-sized bits of roll did pass from my hand to Molly’s waiting mouth, however. I couldn’t let her think I was ignoring her. A grandpa needs someone to get up on his lap and kiss his nose, and cheeks, and forehead, and chin, and leave lip prints on his glasses. But the grandkids are in Idaho, and Molly is the next best thing.

Beth called while I was there and gave me a very special Christmas present. She said that all the Christmas cards received by the Pratts this Christmas season had been hung on the front door. One of them, however, wound up on Hayden’s bedroom door. That card was the one from his grandpa in Georgia. That wasn’t as good as having an excited five-year old bouncing on my lap, but it was close.

Another gift I’ll treasure is the small collage of seven pictures Karen and Russ put together. There is a picture of Russ and Beth on my lap. It has to be thirty years old, probably taken in 1985, when Beth was one, and Russ seven. Next to it is a picture of Hayden, MaKenna, Russ, Beth and me taken last spring when Beth, Debbie and the kids came to Columbus for a visit. Words cannot describe the feeling of seeing two happy, smiling kids on my knees, next to a picture of them as adults, the confident, assured, loving adults we always hoped they would become, along with the next generation of happy, smiling kids.

It was a wonderful Christmas, indeed.

To Bed, Perchance to Sleep

According to an article on the National Multiple Sclerosis Society's website, a person with MS is up to three times more likely to exper...