Meg,

By the way, my wife was so moved by the care of her chemo nurses before that she is now applying to nursing programs herself.

Well, I wish her all the luck in the world. Talk about having strength. Your wife could have crawled into a hole and no one would have blamed her but instead she's thinking of others and that's what I was talking about when I said that adversity brings out the best in people.

It says a lot about the woman’s family as well. If she didn’t have them to lean on she wouldn’t be able to be so forward thinking. She’d be stuck in the moment and suffering alone. All families, no matter what culture they come from, have the desire to pull together in illness. Some people may do more than others, but they all care in their own way. The person who thinks they do all the work in one family might not do anywhere near as much as the least helpful in another family. But they all do what they can.

I love taking care of people who have Alzheimer’s. I don’t know why, I just always have. I guess it’s because they don’t have the “ability” to hold back so much anymore. When they’re mad, they tell you. When they’re happy, they let you know. They really are fun for me, and exasperating. But I can clock out at the end of the day. Family who cares for their own can’t. They have to stay there, just like they were caring for an infant. There’s a saying in Alzheimer’s care, “Twice a child, once an adult.”

The patients themselves are fun to care for. They are pretty much the same as they were before only confused about it. A nice old man is still a nice old man, we just call it “pleasantly confused”. A mean old lady is still a mean old lady, she just can’t quite remember how to be mean so it can be rather entertaining. It’s certainly an interesting way to spend your time. Anyway, they remember what they want to do, they just don’t remember how to do those things.

I admitted one man who had his bus pass in his wallet. That was back when we didn’t search the wallets so I didn’t know he had it. Right before the helicopters went up, we got a call from the cops in downtown Chicago. The man got on the bus and rode it to the end of the line. He didn’t know how to get where he was going and I don’t even know if he had a plan. But he couldn’t remember how to negotiate the bus system, and he probably took the bus every day of his life.

I’ve had women come up to me at the nurses station and say, “Ma’am, is there any work here for me today? I’m very good at dictation, and I’m good with numbers.” The people remember something about themselves, but not enough to string a few thoughts together. Things that are familiar to them have no real meaning, they just know that they should recognize them. The guy got on the bus because it reminded him of something, the nursing home didn’t. He went with what looked familiar.

I drove up to work one day and found a lady in a Merry Walker (a square, boxy type of walking device with a chair to sit in and a frame to hold onto) and she was merrily Merry-Walking away. She was headed for the trees behind the home. If I hadn’t driven up when I did, she would have been back in those trees, and quite tough to find. I’m sure she was trying to get home but she didn’t know how to get there. She just knew it wasn’t the nursing home wasn’t it.

The mind is a funny thing. It keeps so many things locked up and lets the most important things go. These people might look at their own children and see no one they know. But they can tell you all about the day that they graduated from 8th grade. They might have moved to America when they were 4…but they don’t remember a word of English. Italian, they know well, and they haven’t even spoken Italian in 80 years. They might know that you’re a nurse, but they don’t know why they’re in a hospital.

They remember that they’d like to chat with you, but they don’t remember how to do that. One old man recently wanted to chat with me. So, I leaned onto his side rails to get close and listened to him. He spoke a bunch of disjointed words and phrases, none of it making any sense. Then… he looked up at me in my jingle bell earrings, and jingled my balls saying, “Tickle, tickle.” He giggled like a child. He recognized that the earrings were a festive type thing, but not exactly what they meant. But, they did make him happy and that’s why he felt like he could shake them.

These patients are childlike in so many ways that I enjoy their attitude. Of course, not all are pleasant, an asshole who gets Alzheimer’s is still an asshole. One lady would walk the halls all day long. If I was behind her, I would eventually overtake her. Once as I came up behind her, she said, “Don’t you ever follow me again!” And then she proceeded to smack me in the face. I’ll never forget that woman, Loretta, for as long as I live.

Once I had a patient with Alzheimer’s who had been a Grand Dragon of the KKK. (I think it’s Grand Dragon, whatever they call the leaders.) He was a real jerk. But all I’d have to do do get him to act like a gentleman was say, “I’ll get the black lady to help me!” That man would cower like a pussy cat and do exactly what I asked him to do. But even the jerks I care for are fun, they still make me laugh, as long as they don’t hit me too hard.

They’re all living pieces of history and I love that I have had the chance to care for them. They tell stories that you wouldn’t ever hear from someone who was your own age. They have so much to teach anyone who will listen. It’s sad to see people who don’t know where they are and can’t remember where they’re supposed to be. But when they have family, it’s a little easier to live. They are truly in a real Twilight Zone and they want to be with us, where we are, but they can’t figure out how to get to our world. Try as they might, they just can’t find their way. They look at you with eyes that beg you to tell them how to get back to where they came from. There’s nothing that you can do to help them but you can try to make them feel better where they are. And that means giving them their dignity however you can.

When I work with these folks, I try to picture them young and happy…with children and dreams for the future. I think about the fact that they were born to parents who loved them and had brothers and sisters and friends. They are just like us only more time has passed for them. They’re just like children only they won’t be learning anything new. Tomorrow they won’t even know the little that they knew today. They are fading slowly but when they have family around them, they don’t really fade away at all. But there are a few who are left without anyone to speak to. For whatever reason, they have no one to remember them or to visit them. I had one guy who was a ward of the state because he had no family. So, we had to call an overworked social worker when the man needed shoes. If he had a family, they would have left work to bring the poor guy some shoes.

With all confused people, the family is the most important factor in their care. Nothing we can do will reassure them as much as a familiar face. Even if they don’t remember your face, they might remember your touch and they certainly could use the loving care that only comes from family. We all need someone to stand by us and say, “It’s going to be just fine, I promise. I’ll be right here the entire time and we’ll see it through together.” It would be hard enough to have kidney disease and have to face that without family. Can you imagine facing Alzheimer’s without family? It would be like riding a train that you couldn’t get off of and you have no idea where you’re going. I can’t think of much more frightening.