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.

Sunday, April 18, 2010

How can I be angry at him?

Yet I find it happens so I try to change the focus of what I am angry at.

I have learned, for the most part, not to make plans for anything and NEVER promise anyone we will attend, meet, go. I have been disappointed too many times and do the best I can to avoid the emotion.

We make plans to do things. We talk about them and plan out our schedule for accomplishing them only to lay them aside in the end. The emotional effort that goes into planning a trip just to the store is pretty big around here.

Today though, I find myself once again in the throws of disappointment and yes anger. Anger I am trying not to displace.
Last night we made all the plans to follow through with a trip to our grandson's 4th Birthday Party.
I have told all of our children do NOT count on us to be able to join you in anything. I don't want them to be disappointed if I say we will and then turns out we can't.
Hubby carried on a very clear and concise conversation about it. We planned the attire and timing for the 3 hr trip and it was set that we would go. I went to sleep excited at the prospect of not only getting to see our grandchildren, and daughter, but seeing the surprise on our daughters face when we arrived. I knew we would be greeted by all sorts of hugs and kisses and maybe a few happy tears. Now all of that is dashed into the ground this morning.

But I have to keep asking myself. How can I be angry at Hubby?

If I woke up or found myself in a strange place with people I really do not remember how would I feel?
If someone told me something I was supposed to have done and I didn't remember it, how would I feel?
If a stranger I was told I was married to announced we made plans and started telling me I needed to get ready to go but I didn't remember, how would I feel?

How would I feel if every day I was lost in partially familiar territory not knowing how to find my way out and only being comforted by the few things I did remember. If I couldn't distinguish between my dreams and my reality. "Did I dream that or did it really happen?" If I thought I had conversations with people that seem real to me. If my mind told me I could do something and my body disagreed.
How would I feel?

So I MUST daily remind myself of those things for Hubby's sake.

I am however, mad as hell (sorry) about Lewy bodies.
It steals so much and the harder I try to fight it the harder it fights back.
Mocking me that it will win in the end. I just want to give it a run for the money. It just really beats me up some days.

There is only so much one person can deal with and some days I think I may be at the end of my rope.
Hubby's Home Health Contract expired and he was booted out of the system until the V.A. catches up with the authorization for renewal. This means no aide for him and no quick errands to town for necessaries. (Thank the Lord for family willing to make a milk run) Why it may take more than 2 weeks to renew is beyond me. Especially since I was on the phone with them as they put in the request. But This person has to OK it and That person has to double OK it. (rolling eyes).
Of course I have every capability to tend to Hubby's personal care and I do. I think the aide is more for me than Hubby :)

We are also on 3 weeks since the horrible bank incident.
Still no funds available for us and although I was able to scrape up enough money to get the bills paid, next month's crop of bills are coming in with no resources available to take care of them. **This is not a cry for help. This information is strictly for an update on the situation. I truly believe things will be taken care of in due time.**

Today I still have some rope left to cling to.
I don't know who reads this thing but I do know it is a pretty good therapy for me.
Just getting the words out of my head helps.

It's a beautiful Sunday. Cool and crisp.
Hubby sleeps quietly and peacefully as opposed to thrashing and talking.
Grandson will have a wonderful time with his friends, brothers and parents. They will know I am thinking of them.
I have a roof over me and food in the house.
My internet is connected (very important) ;-)
I am loved and prayed for.

In everything give thanks.


  1. Kathy, I read your thoughts and I pray for you and hubby. We have never met, but I think of you often. You are an amazing woman and your love for your hubby is very apparent in your posts even when you are tired and beaten down.

    I am very glad that you have people who support you even in the seemingly small things like milk runs. I do believe the aide is very much for you. As capable as you are when you carry the weight of caring for someone you need a chance to let go and have someone else take over. It allows you just for a few minutes to not have to be ever vigilant.

    Sending you hugs through cyberspace,

  2. Tamara,
    Thank you for your kind words and prayers :)

    It is funny that a milk run does seem like such a simple thing. Yet when you are on the receiving end of it the run was monumental.

    Caregiving can change your perspective about a lot of things.

    I suppose it would be easy to concentrate on the bad things and become hard, bitter and withdrawn. But whoever said I liked easy ;-)
    (of course I DO have my moments when I am ready to run screaming refusing to return)

    I hope I am becoming the woman God wants me to be. I hope the things He is teaching me are applied to my life and shared with others if in nothing more than action. Speaking has never been my forte. And I hope I don't lose sight of His many blessings from the very smallest to the the most grand.

    Cyber Hugs returned
    Kathy :)

  3. Kathy, I love reading your blog. I feel your pain and sometimes I wish we lived closer so that we could help each other on those hard days where we need to get away from our loved one.

    You are a strong woman. I know your disappointment oh so well... like Tamara, I think of you a lot and send you light to help you find your way through the crazy days.

    I wish peace to both you and your hubby!

  4. Oh Susan,
    I know you surely do feel the pain.
    I admire all the hard work, effort and yes, sacrifices you give to make your mother comfortable and keep her safe.

    Thank you for the light :)

  5. Hello Kathy,
    Spouses travel a different road...a road only truly understood by another caregiver spouse. Having cared for my father I have some insight but not the feelings and heartbreak you write about. I'm sure your blog inspires all who read it, just as it has done for me.
    Jan Childress (father LBD 2002-2005)

  6. I am new to the LBD world. My father was diagnosed 2 weeks ago. They still cant find medication to keep him calm. THis all came on so fast. Its nice to see that maybe, my dad can be like your husband and sleep one day again.

    God Bless you.

  7. Missy,
    {{{cyber hugs]]]
    I am so sorry you have to be on the Lewy Journey but I am happy you are seeking information. Knowledge is power.

    If you haven't already, check out the links about Lewy Bodies that I have. You will find a world of information. Join a support group and follow the forums. They are full of first hand knowledge.
    Many of my links to other blogs I follow are of people caring for loved ones with Lewy. Please know you are not alone.

    Are you your fathers caregiver? It can seem maddening to find just the right meds and or supplements that seem to be offering relief to some of the symptoms. We are blessed with a wonderful Neurologist. He listens to me and I trust his judgment.

    Lewy is a roller coaster ride for sure. One you don't have to ride alone though.

    Prayers for you and your family,
    My email address is on my profile if you ever need a set of eyes.

  8. Jan,

    Thanks for following my journey.
    I know you have walked as difficult a path as the rest of us caring for loved ones. Be they spouses or parents.

    Your fathers journey may have ended but I hope you hold many pleasant memories of his life and can use your experience to reach out to and help another that find themselves on the up and down journey.



Thank you for taking the time to word verify comments. I'm sorry that due to Bot Spam the process is a little more time consuming.

Note: Only a member of this blog may post a comment.