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.

Thursday, January 14, 2010

6 words, first word, 1 syllable, sounds like...

 LBDA explains dementia as a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Communication problems are a major problem when dealing with anyone with a dementia problem.
If you have ever tried to talk with a person with dementia you know what I mean.

With Lewy Body the problem seems even more frustrating when a very logical conversation is happening and it suddenly changes into the a jumbled mess of nonsense leaving both me and Hubby confused as I try to sort through what he was trying to say. Sometimes I'm pretty good at understanding his needs even if what he says doesn't match up. One way conversations are becoming the norm but I still try and talk to him about things. I know he is unable to make all major decisions but when we take a rare opportunity to eat out I still tell him what is on the menu and there are even times he can make a very simple decision by answering "no" to what he doesn't want.

On those rare eating out occasions I like to take him to his familiar restaurant. A place he visited daily to have coffee with friends and shoot the breeze. Every day 3PM for several years.  It is user friendly to Bobby and very attentive to our needs. Small and intimate, just what we require. Many of those friends are now deceased or have dropped out of his life for various reasons. But the restaurant is still a stomping ground he knows.

Our waitresses are patient with the length of time it takes us to decide things and finish eating. They never complain about how high maintenance we have become and they are rewarded for it.

Since communicating is so obviously difficult I have noticed that people talk to me when they want to know something about Hubby. I usually turn to Hubby, ask him if he heard what was said, repeat it in a simple but non childlike way then look back at the person. Not only have I noticed this at eating establishments but also the Dr offices, or when we run into people we know and I am not happy about it. I wish that people understood that Hubby is not invisible. He is still in there, locked in someplace. He just can't get out.

Hubby has lost so many "friends" (actual and so called) as mentioned. Death, fear, the opportunity to take advantage now gone, their own lives and hardships and many more reasons I am sure keep them away. This breaks my heart.

One of the more important things I wish to learn from this life experience it is that I want to be a better friend. I pray I do learn that, I pray I have been doing that even in my limited ability by reaching out to others in need, being an e-shoulder or an e-ear. I want to be the friend the Bible teaches me to be.

Proverbs 17:7(a) ; A friend loves at all times...

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