In some Alzheimer's patients, so the neurologist tells me, language skills are the first out the door. In my husband's case, the language skills remained stable long after the executive function started to go.
That means he might at one time have known how to accomplish a task, and he probably can still accomplish that task with help, but he can't remember the task, plan the task, get the supplies for the task, organize the task, and complete the task. In other words, he can paint the room for you, but you need to pick the colors, pick up the supplies, make sure all the necessary tools are there, and give exact instructions (to be repeated) as to what it is you want done. And you must be patient when he gets sidetracked.
For instance, today, we went to gas up the truck. As I exited the vehicle, I asked if he had checked the oil lately. He didn't remember, so up went the hood. He found the oil stick, he pulled it out, wiped it off, and...well, golly...it was down two quarts. He didn't remember what grade to get, so I suggested he check the oil sticker on the windshield from the last time the oil was changed. He got sidetracked in the small print, so I looked over his shoulder and saw that it was the second thing listed, right between the date and the mileage.
I said I would go into the station to get the oil while he filled up the tank with gas. When I came out, I saw that he was standing next to the vehicle, but he hadn't filled it up. Upset with himself, he found the appropriate key for the gas tank after a few tries, opened up the little door, took off the gas cap, placed it on the dash, and came to where I was standing in front of the vehicle. But he didn't actually put the nozzle in and started the pump.
I handed him the two quarts of oil, which he placed inside the cab of the truck. I suggested that it might be a good idea for him to go ahead and put the oil in, reminding him that he had checked the oil level and that it was very low. "Oh, yes. That's right." I helped him find the right place to put in the oil. He took the cap off, poured in the oil, checked the level again, and it was all good.
That's when I noticed that he hadn't filled up the tank. You know, it had slipped his mind because he was distracted. He said he didn't know what was wrong with him these days, a comment which, happily, he will soon forget. However, I will not. It is another reminder, another punch in my heart. It makes me weep inside.
He filled up the tank, locked the little door, put the hood down, and started to get into the truck. I mentioned that the gas cap was still on the dash, and he unlocked the gas door again, allowing me to put the gas cap back on while he shook his head at himself.
Now, you might think to yourself, "So, what's the big deal? The truck got filled up, and the oil got put it. It's all good." Yes, that's true.
But this is our new normal: Every task requires reminding. Every procedure requires gentle prodding. Every chore requires instructions. Repeat step one. And, at the end of a long day, that's wearing. And you know what else is hard? Nobody understands how frustrating it is, for both of us. I mean, how hard can it be, right?
I know you don't understand, though you think you do. You can't understand unless it's happening to you, and it's happening every day, and it's happening every time anything needs to get done. It's emotionally devastating, and not everyone has a support system, and not everyone has hope or faith.
You might be wondering how you can be helpful. Just be there. This time, your kindness and the offer of a shoulder to cry on might be needed. But next time, it could be you who needs the shoulder and the kindness. Especially the kindness.