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.

Friday, April 26, 2013

False Hope

Lewy Body dementia is peculiar in that it comes with fluctuations in cognition.
Don't believe me, check out this lbda link they have all the technical/medical info about lewy and then some.

Hubby has had plenty of fluctuations in cognition. They can last anywhere from a few moments to days. He can go from completely confused that he is in his own house to describing how we built it and back to wondering where we are all in the span of a few moments, or over the course of a few hrs or days.
We've had a huge positive fluctuation over the course of several weeks.
Hubby had even seemed "better". His mobility and memory were improved greatly. He could carry on a detailed conversation. He was remembering things even I had forgotten. He was walking without the use of any assistance. Long distances at that. Long, as in from the car to the inside of a local eating establishment and back out. 
We had the occasional "blips" but nothing that wasn't quickly recovered from. 

then, the bottom fell out. 

In my heart I knew it would be coming because that's what Lewy does, it tricks you. 
It tricked Hubby. He was so aware that he was feeling better. He was convinced he WAS getting better. He commented on how good he was doing and that he thought he was "going to beat this". It was heartbreaking to hear him talk like that because I was staying poised for the decline and unable to REALLY enjoy the moments of clarity. But, the one day I let my guard down we ended up in a physical altercation in the car. 
The day started out fine. We made plans to go to town. I got him shaved, something he still wasn't able to do and he dressed himself. 
Once we got into town, Hubby became angry at me because he had decided he was feeling well enough that he wanted to move out and wanted to see a lawyer. I refused to take him. Instead I turned the car around and headed home. Our day out turned into a fight for the keys and steering while we were driving. We are blessed that we live in a very small town with very little traffic. My anxiety went into overdrive and the fight over the keys resulted in Hubby getting a scratch injury from the key ring. We've been through this type of behavior before but it's been about 3 yrs. And to be honest, it feels like we had gone back in time 3 yrs but I did not want to relive those 3 years again. 
Over the last few days we have skipped ahead. We are back to angry and hurtful words.  
I guess I'll take the reality as opposed to the false hope.

1 comment:

  1. Oh how your words and story are so very familiar. Bless you dearly.
    My heart and prayers go out to you both. (((Kathy)))

    ReplyDelete

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