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, August 22, 2013

What have I done?

In my mind, I've put myself in seclusion from lewy.
Seclusion from the blog. Seclusion from caregiving groups.
I've separated myself to think, ponder, to pray. I may have to live with it but I don't always want to think about it so I am giving it the cold shoulder. The silent treatment.
For now, this seems to be my self defense for protecting my minds peace as I sort through things. Yet even though I'm ignoring all things lewy, my mind is always churning about ways to make things easier for Hubby. I don't think that can be classified as denial when it's at the front of my thoughts all the time.

One of the big issues Hubby has had for quite a while has been chronic back pain.
Poor guys complains all the time. Those compression fractures he suffered a few months back didn't help things either and we have tried to find ways to alleviate the pain. At the least I would like to find a way to cap it to a certain level since it seems impossible to be rid of completely.
The, what feels like, never ending complaining finally weighed heavily enough on me that I vowed to do whatever we could at any speed we needed to, to get rid of Hubby's pain.
I made an appointment with Hubby's Primary Care Physician even though we weren't scheduled. The VA schedules everything and we are supposed to sit and wait. I chose to jump track. At this appointment we again discussed Hubby's pain and chose to take a more aggressive approach caring for it. In the past I have always dragged my feet with anything new for fear of side effects worsening lewy. I suppose I realize that lewy is going to stay it's course no matter what we do or how fast or slow we do it. Still, in the back of my mind I ask "Am I doing the right thing?"

Another avenue for relief was a Chiropractor. In the past Hubby has seen a chiropractor and feeling certain that his back had healed enough I made another appointment for an adjustment for Hubby. I guess you could say I am trying to adjust his attitude ;-)
If you ask Hubby he would probably tell you I need mine adjusted too. :0

After the intake which included the info about his recent falls and compression fractures and the lesson on Lewy Body; What? You thought I wouldn't? The plan of action was neck xrays and start there first. I got to see the xray and it was such a surprise to me when I noticed Hubby had 5, yes, FIVE! healed compression fractures in his neck most likely from his falls he had taken over the last several months. 
When I had taken Hubby to the ER nobody ever x-rayed his neck when he was seen, only his hip and back. After his last couple of falls his main complaint was his lower back so I never thought about his head or neck unless he had hit his head, which he hadn't, but just a hard sitting jolt can be enough to compress your vertebrae in your neck. Now I know to ask for head/neck x-rays too if we ever need another ER visit.

Dr Chiro adjusted Hubby and believe it or not, Hubby said he felt better afterward! YAY! 
The new meds, morphine, came in and Hubby started taking them. I watch him like a hawk but I don't really know what I'm watching for anymore. He's sleepier now, if that seems possible. Sometimes when he wakes he looks like he's in another world. I guess this is odd because I've always been included in this other world of his, now I'm just a stranger looking in. Maybe this is just an adjustment period for the meds, maybe it will be our new normal. Only God knows that. 
I ask myself, "What have I done?" 
It is then I must listen to my inner peace repeating 2 Timothy 1:7 For God hath not given us the spirit of fear, but of power and of love and of a sound mind. And reminding me, "You did everything you could to give Hubby the best quality of life you could. You have sought out ways to release him from the pain and are taking steps to do so, You love him even when he seems unlovable. You're doing the best you can with what you have and know." 
That's what I have done.

I guess I don't need to tell you about the cognition issues since we all know what direction they are going in also, I will share some fun with you though! 

Hubby is always wanting to "go" someplace and some of the time we actually do venture out in the late afternoons. One day Hubby decided he wanted a steak for supper. I'm not going to complain about that so we stopped at Chili's.
Sure enough they prepared an excellent ribeye. So tender and juicy! mmmm
I scarf mine down like I'll never eat again and Hubby eats his mashed potatoes.
Seriously, there's a steak sitting there, I even cut it up for him.
I ask if his steak is good, he says "Very", we brag to the waiter and manager.
The bill comes, $16 each! I gulp and pay it, ask for a to go box for Hubby.
We get home and he asks me if I want the steak. I think about it but decline.
Willpower, go me!
The next thing I know, he's feeding a $16 steak to the DOGS!!!!! 

At least he asked me first. ROFLOL!!!!

On another occasion Hubby asked me "Who do you work for?"
I answered, I don't work for anyone.
He then asks "How do you make it?"
Apparently my answer of "Honey, I'm married to you" was hilarious because he busted out laughing! LOL!

And again, In an effort to figure out who I am, Hubby just made me show proof of identification, from the V.A. My drivers license wasn't good enough for him. Good thing I had my medical card o_O 


  1. Hi Kathy - maybe your latest posting about Hub's meds is not showing up? I can see the title in the blog feed, but it doesn't open up in the blog...is it just me? Or can you check it again? Amanda in Japan

    1. Hi Amanda,

      Thanks for making contact.
      Girl I don't know what I did but I started a blog post, hit something and it tried to publish before I finished. I deleted, or thought I deleted, so you are seeing my mistake I tried to back out of. :/
      Also, like a cat snooping around places I had no need to be, I clicked something that blocked my comments and I couldn't even respond to ones made UGH!! Me and my clicky fingers. I THINK I have THAT all straightened out since I now have an option to reply to you YAY!!
      I know I know, keep my hands to myself ;-)
      I'll get my post finished with an update.
      Thanks for hanging in there with me. I've been pretty lax in my blogging.

      I hope you are well.

  2. Hi Kathy,

    Love your blog, especially this post. It's so sweet how you take care of your hubby and how you share your story with us. I'm sure it helps a lot of people that are dealing with dementia too.

    I was wondering you allow guest posts on your blog? I'm collaborating with a leading nutrition specialist in trying to increase Migraine and Alzheimer awareness on the occasion of the Migraine Awareness Week (1st September to 7th September 2013) and the World Alzheimer's Day (21st September 2013).

    Please let me know if you'd be interested. I'd greatly appreciate the opportunity and if you'd contact me via email (ihunkeler@blueglass.co.uk).

    Warm regards,

    1. Irma,

      Thank you for your interest in guest blogging.
      I have given it thought but have decided to keep the contents related to the personal journey Hubby and I take with Lewy.

      I wish you well,


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