Disclaimer

This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Sunday, January 24, 2010

How long have you lived here?

Wikipedia describesThe Capgras delusion

 (or Capgras syndrome) is a disorder in which a person holds a delusion that a friend, spouse, parent or other close family member, has been replaced by an identical-looking impostor. The Capgras delusion is classed as a delusional misidentification syndrome, a class of delusional beliefs that involves the misidentification of people, places or objects.

The 's' is silent.

Ever wake from a dream in the middle of the night and find yourself twisted around in the bed and for just a moment you aren't sure exactly where you are? That has happened to me but I was always able to gather my bearings. Unfortunately this is the only description I can give as to what it might be like to have dementia and feel lost in your own house.

Hubby started having house problems before the Lewy Body diagnosis. His confusion as to where we were was mostly at night but just as easily sorted out when he said it. Hubby was aware he was mistaken and corrected himself, in the beginning.

Then he started asking where we were, who owned this place and how we got here. I told him we were in our own house. I asked him where he thought he was and he suspiciously told me I was trying to convince him he was someplace he really wasn’t. He finally told me we were not at (our address). I tried to reassure him we were but he wouldn’t ever be satisfied with the answers and he got up and slowly walked into each room carefully looking to make sure nobody was here and checking out everything.

He eventually became convinced we are in a double wide. (we live in a 2 story house) He can’t decide where it is located or who owns it. Trailer talk was a nightly conversation

“How does this thing go together?”
It doesn't, it's a house
“Who owns this?”
We do
“What’s in that room?”
The bathroom, still
“How did this trailer get here?”
It's a house and we built it
“Where is this trailer located?”
The same place it's always been for the last 15 yrs
etc etc

Now mix in me. My first episode of Hubby not knowing me came in April of 2008, 6 mo. after his diagnosis.
He was looking at me very hard as if studying me so I asked him if he knew who I was and he said ‘No’
Then he said I was his sister. He went to sleep right after that.I was left feeling alone and sad.

Hubby started talking to me about me. I always find it amusing when he does that for some reason
He once told me that his wife had all the sets of keys to the trailer. I asked him what his wife’s name was and he replied that he had so many he couldn’t decide. I asked who he thought I was and he said Kathy. I asked if he thought I was his wife and he said I fit in there someplace.  LOL! Those are all logical statements as I am wife number 4 and my name is Kathy :)

I think our husband wife relationship took a turn the night in bed he got up, rolled over on top of and sat on me. He looked straight at me and asked me, “What was your name?”  I told him Kathy. He said “I thought that’s what it was but I wasn’t sure.”

I'm sure you have all heard the jokes about that happening but it became my reality and for a second it wasn't funny, just very very sad.

Of course I try to cover negative feelings with humor and although I NEVER said it out loud my thoughts were, It doesn't matter. Just leave the $200 on the table and remember, you're getting the Sr Discount ;-)

 After that incident I found it difficult to be intimate with him. Overwhelming in my mind was the thought he might not know who I am or worse, think I’m someone else. My heart could not take that. My affections have changed to a more nurturing love from an intimately passionate one.

The strange house and the different wife are not scary issues for Hubby. Hubby seems to accept the fact that most of his furniture is here in this strange house. It's seems perfectly fine to him that he has another house "just like this one" but does not live in it. He is OK with the fact that I live here and take care of him and he lives with me. He knows I am his wife but doesn't remember getting married to me and since everyone has told him we are married he just accepts it.

So in looking for the good in these situations I must say Hubby feels safe and content today. He is not stressed nor agitated about these things. He never tries to leave or wander off looking for the other house. He knows if he needs anything I am here for him and that in itself is a blessing.

1 comment:

  1. Whoo hoo...you get $200?! Dang girl. ;)

    It's good to know that you can keep your sense of humor, Kathy. I can only imagine the toll this takes on you. You're such a strong woman. I am happy that you are sharing your stories. I know there are others out there who will benefit from them.

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