Showing posts with label navigating Lewy Land. Show all posts
Showing posts with label navigating Lewy Land. Show all posts

Saturday, February 27, 2010


Over the past few weeks, there have been a few developments. My housemate probably has Lewy Body Dementia. Basically, in a nutshell, that means she ain't comin' home. Ever.

Each day is a new day for her. She doesn't remember her visitors or activities from the day before. Sometimes when she's prompted, she can remember snippets from previous days. Mostly she sits on the bed with her cell phone in hand, calling her son to "bring me home" or making random calls, giving the details of her latest trip to Lewy Land.

This morning.

My phone.

5.14 AM - "I want to come home. Why can't I come home?"

6.17 AM - "The sheriffs are holding me here. They are at the door and there's a big man standing in my doorway. I'm being kept hostage. You need to come and get me." (This means she tried to bolt and the nursing facility staff is trying to keep her from doing it again.)

6.30 AM - "I'm at the apartments across the street. Near the filling station. Can you bring the car and get me? I'll wait about ten minutes. I hope you get this message." (This is a complete fantasy. She is at the nursing facility.)

7.00 AM - "I tried to get out the back door but there's a pack of dogs out there. They're growling and I'm afraid to open the door. I'm desperate, honey." (There are no dogs.)

This was just the beginning of the day. This goes on all day. Every day. Her son gets the bulk of the calls.

Since she is considered a "flight risk", we will be transferring her to a more secure facility next week.

One of the most painful things to hear is that she believes God is punishing her. She continually asks "what did I do wrong?" or "what do I have to do to get out? How much time do I have to do?" She has the belief that she is serving a sentence. She believes the neurologist has sentenced her to time because she missed some questions during last week's visit. That is her perception of her confinement.

It's a difficult question to deal with. Why do these things happen? Certainly she did nothing "wrong" and she's not "serving time", although I know it feels that way to her.

God punishing her? No.

But how do you explain to someone in that condition that we live in a random and chaotic universe? Sh*t happens. There's no adequate explanation. There's no scientific explanation and there's certainly no dialectic explanation.

How to be comforting and reassuring becomes especially challenging when there's no concretes to offer. She has a horrible disease, a progressive disease, and she will die in a nursing facility.

I, of all people, have no answers.



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