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.

Wednesday, May 12, 2010

Something Different, Indulge me

Ok so this time I am using this forum for personal gain. I hope :-)

As a full time caregiver I have to work around my obstacles. The one I find the hardest is the inability to just get up and go when I want to. In many ways I understand Hubby's anxiety about not being able to drive any longer and feeling as though his freedom has been taken away. Even though he has been assured that I would be happy to take him anywhere he wanted, it has not alleviated the desire to still drive and the loss that goes with it.

I, even though I can still drive, feel confined by the circumstances of Lewy.
As a stay at home mother for 3 children and home maker for many years the "taxi service" was always ready to pull out. Somehow we managed to attend school functions and meetings and practices and concerts. Groceries were shopped for and errands were run. Dr's appointments were attended friends were transported and church functions were rarly missed. GO GO GO!!

Now the kids are all grown, married and moved away with children of their own, 2 of them anyway.
When our first grandson was born I remember Hubby and I planning the days we would visit grands and attend school functions. We would be present for birthday parties and special occasions. We would go on vacations and take the babies. We would have them for a time during the summer. We were going to be THOSE grandparents.

Lewy, had other plans.
Lewy doesn't like to go. He likes to stay home and sleep. Lewy gets confused about where he is and what's going on at times. Lewy takes a good 2 hrs to get ready to go anywhere and has been known to make a last minute decision to cancel our plans, no matter what they were.

My ability to leave the home for anything depends on Lewy and his desire to go (Insert sarcastic laugh here)
The presence of Hubby's aide to stay while I scoot off to run errands. Another lesson learned in this area is DO NOT count on the time schedule to be followed. She has been know to be dispatched to us
Earlier. Result; me not ready to leave yet.
Or Later. Result; any plans I had made for as certain time had to be canceled or I was too late to show.
Or if the aide was unavailable, no one at all if a fill in could not be found. Result; going nowhere fast.

We have missed baby births, birthday parties, special occasions and "I just want to see you"s.

I can hear you now, "This sounds depressing, what does any of this have to do with a personal gain?"
I found a contest sponsored by OrangeOnions.com. They are giving away a Banzai Inflatable Obstacle Course Bouncer (link here) or in other words a Bounce House for children and I want to win it.
Of course feel free to enter yourselves :)

One of the entries was to write about it in a blog. SO here it is.
Ohh If I won that for the kids to play on while visiting us we wouldn't be remembered as the Grandparents house with the sick Grandpa. Our cool factor would go straight up!! 

So Thank you for letting me indulge a little.
I now return you to regular programming :)


  1. I really hope that you win this thing... I'm visualizing it!

  2. Praying for your bounce house!!!!


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