Sep 20, 2011

Alzheimer's Care, Help Them Remember, or Never Forget ?

There is a very subtle difference between remembering and (not) forgetting.

Alzheimer's Care, Help Them Remember, or Never Forget ?
A neurologist suggested that a woman who is a caregiver for someone newly diagnosed with probable Alzheimer's call me.

I was quite impressed when she did call because it become obvious that she had spent quite a bit of time reading, listening to, and watching articles on the Alzheimer's Reading Room.

She was quite surprised that Dotty could still read and that she would read to me from the newspaper. Interestingly, we happen to have an interesting story written by Tom and Karen Brenner, Never Give Up on Anyone!, that focuses on reading.

By Bob DeMarco
Alzheimer's Reading Room

It is not unusual for a caregiver to remark how surprised they are that Dotty can read, and that she can speak the way she does. We have hundreds of comments about this on the website.

If you have been here reading for a while, you know that Dotty and I read the newspaper each and every morning. The first thing I ask Dotty is, what day is it? Then, what is the date? She gets this information from the top of the newspaper.

Next, I ask her to read me something interesting. You never really know what will catch Dotty's attention. Stories about the deteriorating economy, animals, and pets always catch her attention. Sometimes, I have to move her over to the food section and discuss the recipes with her. Dotty likes food and sometimes she will read me all the ingredients in a recipe.

Dotty reads the entire paper each day, she reads the comics (and sometimes laughs), and she is still doing the crossword puzzle (believe it or not).

Something interesting did happen this morning. Usually, I have the paper waiting for Dotty on the kitchen table and organized by section. This morning Dotty woke up before I brought the paper in.

I asked her, what are you doing? She said, I am going to get the paper. I responded, okay, do it. It was at this point that Dotty realized this was no longer an easy task for her. She then said, unless you want to get it for me. I did.

I sat her down and then handed her the paper still in the plastic bag. I then went to get her medication. I gave her the medication and then the phone rang.

When I returned to check on Dotty my eyes almost popped out of my head. She was sitting back, had the paper open, and was actually reading the paper like you would if you were on a commuter train.

Usually, she reads it while it is lying on the kitchen table. From now on, I am going to hand Dotty the newspaper and let her take it out of the bag. I'll snag the sports and business section later in the morning. I wish I had never stopped handing the paper to Dotty.

This brings us to memory versus "never forgetting".
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I stopped obsessing about Dotty's short term memory many years ago. In fact, I don't really think about her short term memory unless I am talking to someone and they ask.

Don't get me wrong. I did consider white boards and all that stuff way back when. I decided against the white board for reasons that are too long for this story.

Lets just say, my decision on this issue -- remembering versus forgetting -- was influenced by the confluence of three events.

First, the conversation I had with Doctor Chiriboga about letting Dotty do everything she could do, and letting her do it for herself.

Second, my revelation that Dotty and I would continue (start really) to live our lives that way we always had.

And finally, the establishment of a set daily routine to combat poo poo and pee, and include exercise, bright light and socialization into our day.

Long after we started living our lives again it finally dawned on me -- don't let Dotty forget. This became one of my many missions with Dotty.

I understood long before it got really bad that sooner or later Dotty would be unable to remember much of anything. We are now at this point. Dotty cannot remember what just happened, she can no longer tell me about the past, about people from the past, or stories about the past. It is still in there though. She just can't bring it forward anymore.

So far, Dotty has not forgotten how to read the paper every morning, do the crossword, read the comics, and she has not yet forgotten how to eat. She can still give herself a bit of a shower and brush her teeth if I remind her to do it. Dotty still reads from a book each night while in bed. I keep the book right on the bed. She picks it up and reads. No she can't tell me one word about what she is reading. But, she didn't forget how to read the book.

Dotty does make me laugh quite often. Like when she tells me every night when I hand her the ice cream that she hasn't had ice cream in a long time.

Sometimes I say, its that time. Dotty asks what time? I ask, what do we do every night at this time? She can't tell me. I say, its ice cream time. She doesn't remember anymore.

Sometimes though, I don't say anything and it goes well past ice cream time. Sooner or later Dotty might say, did I have my ice cream tonight? She can't remember she had ice cream last night, she isn't sure if she had ice cream this night, but she didn't forget the ice cream. Ice cream is a nightly ritual.

There is a very subtle difference between remembering and (not) forgetting.

The woman that called me asked, how do you help them remember? I really don't know the answer to that question.

What I do know is you can help them to not "forget". This is my belief.

It is a lot of work to help a person living with dementia not to forget. You have to do certain activities over and over,and every day. The time to start doing this is right now.

Let me put it this way. If you watched Dotty eat her ice cream each night you would be filled with joy. She always says the same thing when I ask her, how is it, "its delicious".

Dotty looks like the happiest person in the world when she eats ice cream.

Good enough for me.

Today Dotty liked the newspaper article about the giant outdoor garage sale we have once a year down here in Florida. She wants to go.

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 5,100 articles. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room