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.



~*

15 comments:

Clare said...

beautifully written.... painful story.The no answers part hurts the most. I send you my heart.

Anvilcloud said...

I was going to say that too many reach this sad stage, but I guess that's not totally true because in most cases it means that people have lived fairly long. So, what I guess I mean is that it's sad that this happens to so many people as they age.

Gail said...

HI-

so sorry to hear of your dear friends progressing illness. It is tragic. :-( I am praying and sending light and love. And you are right, there are no answers. Take time to care for yourself in all this.

Love Gail
peace.....

Whitemist said...

I can not say anything. That she is in that situation is horrific. That you are thinking of how to be comforting and reassuring is amazing, blessings to you!

heartinsanfrancisco said...

It's very sad. Maybe thinking that she did something to deserve this punishment is her way of making sense of a situation that makes no sense.

Molly said...

Poor lady. So sad to be ambushed by something like this.....

Leann said...

One of the most difficult things we can do is be on the outside looking in and not be able to stop the madness.

We get those kinds of calls at the switchboard from pts on the floor.

Ruth Hull Chatlien said...

I'm sorry to read of this. It must be very distressing for her and for those who know her and love her.

Jane said...

It's very sad how these things can set in and life as we knew it is no longer. I've been in places with myself where I thought God was punishing me. Of course I know that God is not mean spirited. I think every situation we find ourselves in is there for a growth experience; even if we can't see it in the moment.

Angela said...

You don't necessarily need answers, Chani. You have the compassion in your heart and you know who you have to look out for first. They're all very lucky you're around right now. Much love.

mrwriteon said...

That is horribly sad and you express the tale so powerfully.

Thomas said...

Thanks for sharing. I know this was a difficult story to tell.

hele said...

i'm sorry chani. will say a prayer for you both tonight. much love*

painted maypole said...

oh. I'm sorry that she.. and you, and her son... is/are going through this

Mike Fook said...

God punishing her? No... but, the world is setup like this - and for what reason?

Assuming there is a god - and I don't, but if there is one - he/she/it made the place... and all that can happen here. All the possibilities - are a result of the rules that were put in place. One rule is - brain chemistry can go awry.

It's a TREMENDOUSLY sad state of things with your friend. That would tear me up on a daily basis.

The why... is unanswerable. Maybe someday it all makes sense. Or maybe not... such is another rule of life... we don't know jack!