May 9, 2012

Dotty Wants to Stay Home, and She Can't Eat, Not Won't Eat

I don't want to go anywhere, I want to stay here, I want you to take care of me, I'll do whatever you want me to do -- Dotty Says.

By Bob DeMarco
Alzheimer's Reading Room

Dotty Wants to Stay Home, and She Can't Eat, Not Won't Eat
Last night I had another one of those remarkable experiences with Dotty. One of those more there experiences.

Each time I get a more there from Dotty I am completely and totally amazed. Amazed even though I know beyond a doubt that there is more there when it comes to the deeply forgetful.

I'll tell you what Dotty said and told me, and then I will fill you in on the details.

After talking to Joanne (my sister) late last night Dotty told me in a state of angst,

I don't want to go anywhere, I want to stay here, I want you to take care of me, I'll do whatever you want me to do.

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When Joanne called late last night to check up on Dotty I asked her to talk to Dotty. I learned a long time ago that Joanne has the uncanny ability to perk Dotty up. To bring her out of bad mood. To enliven her.

Lesson number one. Even if your family and friends are not helping directly, they can help by doing some simple things. The simpest would be to call each day, or every other day. Joanne is about 1300 miles away. But, she can still care by picking up the phone. One thousand miles, twelve thousands miles doesn't matter.

After the phone call Dotty told me she doesn't want to go anywhere, and that she wants me to take care of her. She went on to tell me she will do anything I want. She also told me she will try to eat, even though she can't eat.

Lesson number two. I want you to read this carefully.

Dotty is not being a recalcitrant, pig headed child -- she can't eat. Not won't eat. Dotty is not refusing to eat, she just can't stand the way food looks right now.

A simple look at Dotty's face when I try to feed hers tell me that food looks like a "turd" to her. This is my real world interpretation of Alzheimer's World. Food looks like a "turd" to Dotty. Would you eat a "turd"?

Dotty is not hungry, it is that simple. Not hungry, food looks disgusting. That simple.

If you are thinking that a person who is deeply forgetful won't eat out of spite, you are probably wrong. Probably.

In Alzheimer's World things are very different than in the real world. If Dotty thinks food looks disgusting, it is disgusting.

You have to look at situations from the other side. You'll be a lot more effective if you try and learn how a person that is deeply forgetful is feeling, and how they might be perceiving the world. One thing I always do is remind myself, its not about me and how I feel, or how I am perceiving the situation. This is why I have to go into Alzheimer's World to understand.

Dotty wants to stay home. Well, I already knew this. However, hearing her say it under the current circumstances empowered me.

Those of you that have been around for a while already know I am a man on a mission.

My mission has always been to give Dotty the highest quality of life possible. I learned here that most of you are striving for the same goal.

Underneath this, I am striving to keep Dotty home until the end. I have made this clear to many.

Lesson number three. This is not about Me. It is about Dotty.

Dotty wants to stay home. She wants to die right here. I know this.

I will do everything possible to grant that wish. However, I want everyone to understand if it turns out that this won't work, or that it would be bad for Dotty, I will do what is ever necessary to insure that she gets the highest quality of care that is possible and needed.

If for some reason I can't do it, I'll accept the alternative without any reservation.

I have already been thinking about this, and planning for any and all eventualities for years.

Okay, this was not a lecture.

Lesson number four. We all try and do the best we can. That is the only thing that is important. We live in an imperfect world. So no matter how hard we try, we will make mistakes. We, the caregivers, are not perfect. This includes me.

No change in Dotty right now. I will have more to say later.

Thanks to everyone who commented and emailed me.

You are really powering me up. It also amazes me how powerful you support and prayers can be.

They are.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 3,511 articles with more than 297,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room