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 6, 2011

Moving Day

I don't know how or why it happened but Lewy's lid boiled over splattering everywhere and leaving me an emotional mess.
I did something I didn't think I would. I moved out of our bedroom.

I moved for a couple 3 or 4 reasons.

In Hubby's reality he does not remember me as the woman he married.
He has knowledge that we are married because everyone says we are but he doesn't remember the event or the feelings that he had toward me at the time.
Hubby doesn't want to acknowledge he has problems.
Heck, if you ask him he will tell you he has none and some days, he can sound so logical and do something he hasn't been able to in a long time, even I wonder if he is better.
But reality is, he is not and it only takes a short visit with him to realize he has problems.

I awarded myself a much needed respite about a month ago.
I spent the time with me regrouping and that regrouping came in handy right out of the gate when I picked Hubby up from the V.A. facility.
Hubby, on the other hand, didn't get the time away from Lewy.
No matter where he goes or what he does, Lewy is a clinging shadow for Hubby.

Since Hubby has been home he appeared calmer, or maybe I was the calmer one.
Either way there was calm, but was it the calm before the storm?

Hubby feels isolated and has nobody to talk to or visit with besides me.
Until yesterday, our aide, thanks to the slow moving process of the V.A., had not been reinstated . This was week 3. So Hubby hasn't even had a chance to visit or complain to her.

One morning I woke with a minor headache, you know, the kind that doesn't require meds and at some point will go away completely. It was at this point during the course of our regular routine of accusatory and hurtful remarks from Hubby that my reaction took a dark turn and my mouth ran away with itself.
I won't go into the details and I have beat myself up over it plenty. I couldn't find a stopping point, only a reprieve when Hubby would choose sleep.

Did I shake it off? Did I tell myself, It's not Hubby, It's the disease? Did I walk away and regroup?
No I didn't.
I allowed myself to wallow in the hurt and frustration.
Poor, poor me, what a terrible strain on me, woe is me.
If he would just be more cooperative things would be fine.
I allowed myself to become a victim.
This went on for a few days.
Finally I told Hubby that since he didn't want to be with me and was trying to find a way to leave me I decided I was moving out of our bedroom, and I did.

Oldest daughter came by for a visit.

Side note: Our children are very supportive of us. They understand as much as they can about Lewy. They  love us both and want the best for us both. They let either of us talk if we need to and offer words of comfort, truth, hugs and prayers as necessary.

I was whining to telling Oldest Daughter about my hurt feelings and how abused and taken advantage I was feeling. I said I was moving out of the bedroom.
I said that the continuous anger Hubby has towards me and my increasing frustrations and defensive attitude were not a good environment.
Oldest daughter agreed moving out was a good idea and made a simple comment about it that struck a chord, she said it couldn't be a good environment for either of us.

I chewed on that for a while.
I was so busy wrapping myself up in myself and trying to fix things that I lost sight of Hubby.

Hubby's Lewy Body Dementia has stolen his memory of me as his wife. I have said this before.
Even though he knows we are married, he has no memory of that happening and he has no memory of the feelings we had for each other. Most of the time I am a stranger he is married to.

He has nobody to be angry at for his dementia. His mind is slipping and even though he won't REALLY admit it, he does know.
He sometimes speaks of his death hoping it comes soon. Sometimes through man tears.
This breaks my heart for us both but oddly I understand.
How would I feel if I were him?

I have tried to make our union work by trying to remain physically close to Hubby.
I moved my comp into our room and rearranged the furniture so that he would not feel so alone.
A  feeling he himself expressed at one time.
I was close at hand in case he needs anything or wants anything.
In case he needs assistance with walking or balance.
In essence I have chained myself to him and perhaps I am suffocating him while trying to silently persuade him that we are a married couple.
But this relationship is not the 'norm' for what Hubby believes a marriage should be so he rebels.

Maybe his anger is directed at me because even though I am all he has, I'm the one reminding him of what he can no longer do, like driving, or living alone.
Maybe I need to step back to make the situation easier.

My caregiving friend Bette, who care for her mother with dementia, made a very insightful statement about her mothers care in her blog post
She wrote
"So now we move forward, but in a different way. We manage the effects of this awful disease together when we can and apart as needed."

In our home it is time to ease the anger, from us both so we can move forward in our dementia life.
This disease is robbing us both of precious time and we are wasting it by being angry and argumentative.
I can't fix it, so I must learn to manage the situation for us both even if it means being apart to do it.

I'm still close just not in constant view.
I keep my video monitor on so I can see Hubby .
He knows I am  just around the corner from him so I can hear him if he needs me.
He is ok with this situation.

For me the situation is heart hurtful. I don't like it one bit but I can't fix it, so I think for now, this is in our best interest as we mange Lewy Body Dementia.
So I shall repeat Bette's tender and gentle words,
"So now we move forward, but in a different way. We manage the effects of this awful disease together when we can and apart as needed."


  1. Hang in there and know there are people like me supporting you through our prayers.

  2. Kathy, While I am still in contact with most of my memories, I understand where your Husband is. I get lost in my memories, not in touch with today. While we still sleep together, I have pinched her in my sleep during a violent dream. I know someday soon, we will move into different rooms for sleeping. But, we will never move into separate rooms in our lives. Hang onto the memories that you have and the days that are to come. You are in my prayers.


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