Losses

The early losses were easier to deal with. Can't read? Books on tape. Can't concentrate long enough to finish a book? Switch to WCCO radio. Can't drive? Get someone else or try Metro Mobility. Can't walk? Go with walkers and scooters. Add a lift chair, a special high office chair for at the dining table, a high seat on the toilet, grab bar in the bathroom, and a ramp to the front door. Can't breathe well? Add oxygen and a nebulizer. Can't pee? Get catheters, first one-use, then permanent. Can't cook? Get Meals on Wheels during the week. Wife dies? Move in with daughter and family. Can't take care of own hygiene? Get home health aids. Can't keep warm? Get different clothing and kick up the heat and the number of blankets. Can't swallow properly? Add Thick-It to liquids and change some of the solids.

It sounds like a lot, but they accumulated slowly, and each became another adjustment. Each was just another facet of daily routine. Still are, for that matter. These, in retrospect, are the simple adjustments.

But now cognition is leaving, piecemeal. First it was short-term memory. You'd give an answer to a question and have the question repeated twenty minutes later, then ten, now as little as 5 sometimes. Or a question would be started and lost before it's finished being asked. The wrong words are being applied so it's hard to figure out what he's really trying to say.

The sense of time is now meaningless. At first it was days or seasons or a feel for how much time had passed, say, since Mom died. For a while he'd ask if this was Friday or whichever day, and be mostly right. No longer. He still asks, but can't remember the day before, so it's a complete shot in the dark. Lately he's lost all sense of time of day. He sleeps all day and much of the night, but can't reason that if it's light out it's daytime, or if it's dark it's night. So when he wakes in the middle of the night he mostly knows that he's alone and being ignored. Ten minutes after you visit him, tend his needs, and go back to bed, he's calling again, having forgotten your visit. He doesn't know which meal he's just had, and sometimes even loses the fact that he's had it.

It's often worse just after he wakes up. His dreams are the most vivid part of his life now, and he carries them along into his waking world, trying to solve the problem they presented, or needing to impart some piece of information that came to him that way. It's especially important if he's dreaming WWII again. This morning the problem was he was tired of having to strip the arteries out of chickens. I informed him that he didn't need to worry about those anymore. But what about the turkeys? What turkeys? The ones hanging from the ceiling fan over his head. I informed him there were no turkeys there. How did I know? Because this is my house and I wouldn't allow it!

Oh.

It doesn't take dreaming/waking to confuse him. Yesterday we'd just gotten back from a scooter ride and were resting when my brother called. Daddy happily filled him in on what a wonderful Christmas we were having, lots of presents and good food. The conversation went from that to fishing opener with no awareness of the hitch in logic.

When he first became aware of his cognition issues, we asked him if he wanted to be corrected so he'd know what was really going on. He said he did, so we've been trying. But lately, there is so much that is senseless, so much that is hopeless, that most of what we see is the hurt and frustration when we tell him it was just a dream, or we don't understand his question. Sometimes he gets angry at us, demanding to leave and go move in with somebody else. If we can, and it's harmless, we have begun to play along with his fantasies.

Take the lottery. About a week ago he had something very important to tell us, "us " being Paul and myself, the only two home at the time. We needed to remember two numbers, 4 and 9, and only in that order. 9 and then 4 was the wrong answer. When asked, we were to give those numbers. By the time he was finished impressing on us the importance of remembering those numbers, they had grown to three numbers, and he decided he needed to write them down for us. We found him a pen and a napkin to write on. He put yet another group of three numbers on it, then decided that a 4th set was the right answer. When he asked us later if we knew the numbers, we assured him he had written them down for us and we saved the napkin. Now, were these numbers to put on a lottery ticket? He'd used the words "lottery" and "worth thousands of dollars" repeatedly. He couldn't believe how stupid we were! No, it was how we were to answer the phone when they called. And by this time he was tired and ready to go to bed, and couldn't stay up any later to be the one to answer the phone. We promised him we would if "they" called, having no clue who "they" were.

We were also absolutely sure, no matter how obsessed he was now with these numbers, that he'd have absolutely no recollection of it in the morning. I remember it now because I needed an extra napkin for him the other day and found this one again in a stack of books on the lamp table and used it. It had served its purpose.

We celebrated his 97th birthday last weekend, a couple days before "the event". The family got together in the back yard for a bonfire and brats picnic followed by birthday cake. By suppertime, he'd nearly forgotten he'd had visitors for lunch, unless reminded. By his actual birthday it had become meaningless. I woke him up telling him how old he now was. "I am?" it came and went about that fast in his mind. He has decided, however, that he's no longer interested in living to 100.

I'm hoping for that as well. About the only thing left for him to lose is his awareness of his losses. Or what's left of it. And yet, every once in a while, there's a glimmer of awareness, of the old John, just enough to remind you of why you're doing what you're doing. And he occasionally knows enough to appreciate your doing it.