Friday, November 19, 2010

Alzheimer's Disease and Some Huckleberry that Says, She Sounds Good to Me


Here is what I use to think when I heard those words -- get your butt over here and spend a few days doing my job and then tell me how you think she "sounds".

By Bob DeMarco
Alzheimer's Reading Room

Max Wallacks' article -- Alzheimer's Disease Patients Can Deceive Outsiders with Their Behavior -- illustrates how a person suffering from Alzheimer's disease can put on a happy face in front of people. How they somehow rally and act normal in front of people. In the article he discusses the behavior of his great grandmother who suffered from Alzheimer's disease.

Basically, a person can act "normal" in front of outsiders and at the same time act "less than normal" when at home. This is common in Alzheimer's patients.



The ability to be two completely different persons is often disconcerting and frustrating to Alzheimer's caregivers.

How many times have you heard this -- "s/he" sounds really good? This might happen after someone has a telephone conversation with someone that has Alzheimer's disease. The Alzheimer's disease caregiver might feel like they are going "nuts" when they hear this.

Why do we get bent out of shape or experience feelings of anxiety?

Because, we know the Alzheimer's patient is not doing "really good". They might sound "really good" on the phone, but meanwhile, they are driving us crazy all day long with those wild and crazy Alzheimer's disease behaviors. We also know and observe that the person suffering from Alzheimer's disease is deteriorating physically and mentally right before our eyes. So what the heck -- you think they really sound good?

Here is what I use to think when I heard those words -- get your butt over here and spend a few days doing my job and then tell me how you they she "sounds".

Like you, this use to drive me crazy.

How about this one, "wow, she still knows my name", or "she stills knows who I am". Wanna bet?

It took a few years but finally I stopped letting the observations of clueless people bother me.

Here is what I did do. I thought, well they think she sounds really good. So, she must sound really good. So what I decided to do was put my mother, Dotty, in more situations where she can sound "really good".

Let me put it this way. I really don't care much anymore what someone thinks that isn't taking the time to understand Alzheimer's disease, and won't take the time to help me. Won't take the time to understand how really difficult a single minute can be when dealing with someone suffering from Alzheimer's disease. There are 1440 minutes in a day.

I did decide this. I'll try to make as many of those 1440 minutes a day as happy as I can for Dotty.

So, if having someone talking to her on the phone for ten minutes makes her happy -- let's do it. And if, after those ten minutes someone says she sounds really good -- mission accomplished.

It is really simple folks. If Dotty is somehow happy, or more like she used to be back in the old days, fine by me. I cherish those minutes.

If it turns out that Dotty takes off her mask and becomes all "mean and nutty" around me, so what. It no longer matters to me who does or does not understand. I know, and I understand Alzheimer's disease.

I am going to amend what I just said. I know that each and every Alzheimer's caregivers knows and understands that my life is not a "bed of roses" no matter how "good" Dotty sounds at any moment in time. Besides even if it is a "bed of roses", roses have thorns. I get the "sticker bush" every day. You know, I know, good enough for me.

Yes, I do care what other Alzheimer's caregivers think about my life as an Alzheimer's caregiver. In fact, knowing that you understand is one of the single biggest factors that helps me to keep on going.

So lets just put this to bed. If all some huckleberry can tell you is she "really sounds good" let it fly.

We know how difficult a day can be, so don't think you are alone and no one understands. We understand and we are "with you".

Besides, who's opinion is more important. Some huckleberry? Or, an Alzheimer's caregiver?

Here is a little video of Dotty that I shot in the waiting room of the doctor's office. I know she looks a little narly, it was not the best of days.









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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 2,011 articles with more than 200,000 links on the Internet. Bob resides in Delray Beach, FL.


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