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.

Tuesday, December 11, 2012

Wrapped up

Over the last couple of months I feel like, no, I have been wrapped up in my own little personal emotional bubble.
Why do I do that? I'm not really sure. Perhaps it feels like a safe place to protect my heart and mind while I sort through the jumbled mess looking for solutions.
Hubby is dealing with some strong emotions from his Lewy Body Dementia his own self so as we sort through these together and separate I'm finding it difficult to blog about at this time.
gasp! I KNOW! Normally I'm an "everything out there no holds barred" kinda gal.

But this latest Lewy Body Roller Coaster ride is leaving us feeling some motion sickness.
I always know where to go for the support I need. I feel like we have a good team with Hubby's Drs and I feel secure in knowing if I need them they are willing to work with me and Hubby to give him a better quality life. But the majority of my support comes from on line sources that I am so very grateful for. Besides my FaceBook family and friends, I have a Lewy Body spousal support group, a place I can find valuable information from spouses that live with, care for and love those suffering with Lewy body Dementia,
There are FaceBook dementia groups where we can give and take in real time.
I know my adopted support family is there for whatever I need.
I have prayer warriors and well wishers and virtual huggers.
I cherish you all and I have no problems asking for the support I need. Yet at this time I'm not sure exactly what kind of support I need. I think what I need is less "Oh, I'm so sorry", and more ideas, or solution, and lots of, I'm praying. I like the support that makes me feel like a stronger caregiver when I'm at my very weakest. Support that builds me emotionally, allows me to vent and cry then hands me a tissue and picks me up. Sometimes even snatches me up by the collar, shakes me a bit and sets me back down. That feels like support.  That feels strong. That feels like love.
The sorrys make me feel unstable and not strengthened.
So I suppose I'm hiding from the sorrys these days because my emotions are sitting right behind my eyes and under my skin, ready to collapse and I need to get a grip on those.

So until then we're making do the best we can and know how. One day at a time and seeking the smiles.
One BIG smile was very evident the other day.
I was given the gift of clarity from Hubby.
He and I were grazing in the kitchen. He sat down and started a serious conversation with me about dementia.
We talk openly and honestly about it, no secrets or hushed tones about his Lewy Body. He didn't cause it and he can't help it, there is no shame. We talked on and off for quite a while.
After a long silence he asked me a question about something earlier in the day. 

I said; "I don't remember", 
to which he replied, "Honey, are you getting dementia?" 
Then he smiled and cut his hazel blue eyes at me!! 

That my friends was a beautiful gift all wrapped up with a nice bow :)


  1. Kathy, First of all I am NOT SORRY. Phew. Glad we could get that out of the way. :-)

    I'm very happy you have your online (and, ahem, caregiving.com family). Hey, that's me!!

    Since I don't know exactly what's going on but you want solutions, you came to the right place. I'm always willing to hand out solutions whether or not I know what I'm talking about.

    Oh - and I'm willing to go the extra mile and be very long-winded. Remember, it's for you, Kathy!! :-)

    The holidays are stressful - with or without having dementia or other caree issues to deal with. We're surrounded about what the holidays are "supposed" to look like and, frankly, I wouldn't blame you if you were a little POd that your holidays don't look like how you envisioned them pre-LBD. Sometimes when we feel like this we have to just go through the motions of the holiday. Sometimes this seeps into our soul and then we actually feel some of the joy! (When I did this, my situation was a little different; going through a divorce but with a toddler who was very excited about Christmas. Her excitement rubbed off on me for sure). I know you have your BIL who loves the holidays. What if you piled Hubby and BIL in the car and drove around looking at Christmas lights?

    What are we up to now? Solution number 3?

    ARE YOU EXERCISING? Boy, okay, that sounds too harsh. Let's try again. When you write about exercising, you are happy, proud of yourself and I can feel those endorphines rusing around in you clear out in CA. Send me endorphines! :-)

    Do medications need to be changed? When Richard is going through a medication problem for his pain, it usually takes both of us a while to figure out that, aha!, the meds need to be adjusted and that's why someone-who-shall-remain-nameless (or who has been named earlier in this paragraph), is acting like a - well, you can fill in the blank.

    Most of all, I want to tell you that you will get through this. Because you have the heart of an angel and the strength of wonder woman and friends and family who will do anything for you and because there's always tomorrow.

    Love & hugs,


    1. Oh Trish!,
      You know how to support me! :)

      BIL is very excited about Christmas. Since I do my shopping on line we get a lot of deliveries from the Big Brown Truck. He will yell, PACKAGES!! Even Hubby says, "Your man is here." LOL!!
      I have suggested a ride to look at lights but Hubby hasn't felt like it and BIL is pleased to sit and stare at the Christmas tree. He's so easy.

      UGH!! Nice shirt grab and shake there sister!!
      ummm , no, I haven't been exercising like I was, time constraints, oh sheesh, give me a few mins to come up with more excuses because Hubby's candy stash is all I can think of at the moment! OH cold weather, ok ok!! sheesh. I'll dust off the running shoes, back off ;-)

      As far as meds, We're as far as we can get on the meds without putting Hubby in a sleep state. Neither one of us would like that if it can be prevented at all. Time will tell.

      Thank you for being there, for adopting me as family and living in my heart :)
      I cherish you!

  2. So good you have support to reach out to. Blogging is also so helpful for use caregivers.

    Hugs and prayers,


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