May 5, 2011

Alzheimer's, Never Forget, the Stop Sign, and Butt-in-skis

Somehow they pop out of the woodwork, from time to time, and actually try and tell you what you should be doing. Its okay by me if you tell em where to stick it. I don't blame you. But, did you ever try to give them the stop sign.

By Bob DeMarco
Alzheimer's Reading Room

Alzheimer's Brain | Alzheimer's Reading Room

From time to time, I read stories on the internet where Alzheimer's caregivers devise all kinds of ways to help Alzheimer's patients remember.

Most frequently this includes post it notes and white boards. Now in some cases I can understand why this might be necessary. For example, the patient stays at home and the note is to remind them to take their medication. Or, go take a pee. Just kidding on that one.

I always find the efforts of Alzheimer's caregivers to help Alzheimer's patients remember of great interest. Makes perfect sense.

Oddly, I never really focused on trying to help Dotty remember. This can be explained in part because I never had any success in reminding her of anything. For example, I tried for years to get her to remember she just ate, so she couldn't possibly be starving. Or, no you didn't just take a pee, its been two hours.

So I never went in that direction.

However, after one particularly disconcerting episode, Dotty's inability to buy lottery tickets, I did turn my attention to one major goal -- trying to help Dotty to never forget. Never forget how to do things. Like read the newspaper, walk, or how to party.

I did decide early on that if I thought Dotty could do it, I would let her do it. Just let her do it. To this day, she does things that just blow me away. It is both amazing and fascinating. And, to be honest this is what keeps me trying to come up with new ideas or techniques that work.

I was warned, early on, that if I let Dotty do everything for herself I would like get criticized and with great vigor. This proved to be true more times than I care to remember.

It is interesting to me now to think about it though. I can't go more than a day without someone trying to tell me what I should do. Why is it that someone, anyone, would assume they know what is better for Dotty than me?

I think I proved beyond a doubt to everyone around us that I have a good handle on the situation. I also know what Dotty can and can't do. Besides, I have good judgement and I have been making good decisions all my life.

In the old days, when someone that never even saw us before would come galloping up and tell me -- get her a walker. Or, you shouldn't have her on the treadmill, she should be on the exercise bike, I did get bent out of shape. For those that know me, you know, I have a look and a tongue that can cut you in half if I want too. Give you a bad hair day in 50 words or less. So, in the old days I had to bite my tongue.

Now? I just give them the stop sign. Arm straight out, palm facing them. Stop. Believe it or not, it works very effectively. Well I might have a look on my face, and I might be staring straight into their eyes when I do it. But they just SHUT UP. Believe it or not, sometimes I say thanks as we depart from their presence. They are probably thinking I am thanking them for the advice. When in fact, I am thanking them for shutting up.

Dotty is still walking. No walker. Probably doesn't surprise those of you that have not been here a long time. Of course, you didn't know us when Dotty was falling down every day. Pretty much 100 percent of the professional people that have known us for a long time are amazed that Dotty is still walking. Everyone but me.

Dotty is a tough old broad. She has been telling me this for 20 years, at least. I don't know that I believed her for the first ten years. I do now.

No one is more amazed by Dotty than I am. Just about every day she does something that does amaze. This explains in part why this entire effort is so amazing.

I know that many of you have plenty of butt-in-skis around you.

Somehow they pop out of the woodwork from time to time and actually try and tell you what you should be doing. Its okay by me if you tell em where to stick it. I don't blame you. Try giving them the stop sign. Don't say a word, just give em the stop sign. Be patient, stand your ground, stay silent see what happens.

Next, get in here and tell me what happened.

Instead of feeling bad, you might actually start feeling good. It is pretty entertaining when you completely diffuse a person without saying a single word. The look of consternation on their face is well worth the price of admission.

So here is the deal. Forget, if you can, about trying to remind them. If you have something on your mind just tell them. Or, let them do it.

Think about all the things you don't want them to forget how to do. Focus on that.

I am confident when I say this, there is "more there" than you can imagine. The capabilities are greater than you can imagine.

So here is the deal. I want you to prove that I am right -- "more there". But first, I want you to prove to yourself that there is "more there". Then we can start spreading the word together.

You can feel good, or you can feel bad. Its your brain and you get to decide what you are thinking and feeling. Don't be afraid to plug into the good stuff.

Learn more about Alzheimer's and Dementia in the Alzheimer's Reading Room.