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, August 17, 2011

I Surrender

Hubby has been convinced for quite some time now, that he is being held in a V.A. Home and I am his caregiver (jailer).

Whenever he makes a comment about where we are, who's house this is, or a reference to "your house"  I have always corrected him in that the house belongs to us. In moments of frustrated proving, I've even pulled out paperwork to the fact but Hubby just says I have forged his name or tricked him into signing something.
 Since we have been dealing with extra anxiety lately I have decided to surrender to his delusion that the house belongs to me.
I have already accepted that he does not know who I am and instead of correcting him about the house I will just answer the questions or handle the statements as they are. The house is mine, our location is..
This hurts because I know I can prove to Hubby these things but I cant penetrate his beliefs so I must let go of it and watch Lewy steal it away.
In doing so there is less anxiety for both Hubby and myself. The anxiety of his belief we (Me Myself and I, remember there are 3 of us now) are tricking and confusing him is lessened as well as the anxiety of my desire to be right. I don't always have to be right, mumbles eventhoughIamaboutthis.

Some days dealing with Hubby's confusion is like trying to hold sand in a wind storm.
Some days he amazes me with what he does remember.

Tonight I am tired and a little sad because I feel like I've been lost forever in Hubby's mind. Part of me always wanted to believe I was in there somewhere in the deepest parts. And that may be true in the fact that he feels like I'm his security and comes looking for me when I'm out of the room even though he gets angry at me. Or perhaps he is hoping I finally flew the coop and he can make his get away ;-)
I'm also sad (jealous may be a better word) that he remembers people he met and knew for short periods of time and places he has been once in his life, but our home is no longer his.

I will try not to dwell on the negative.
As always I will regroup and adapt as needed.
But first, I think I'll have a donut.


  1. Going along with the hallucinations or the beliefs of our LBD loved ones definitely cuts down on agitation and anxiety.

    Another technique that I've used successfully when mom (or any of her resident friends) starts asking me questions about her hallucinations is to give them perceived control. I ask, "Oh gee. Not sure, how should I proceed?" or "What do you think is the best solution?"

    It works nearly every time. Mom is satisfied that she solved the problem; even though I could not tell you what the initial problem was let alone what the solution she came up with means.

    I am sorry for your grief; I understand. Deep down, I do believe that Hubby knows that you are his special girl.

  2. Wonderful attitude, to surrender. You are living for better, for worse for sure.

  3. I definitely think you are doing the right thing by going with the flow and reducing the stress for your husband and yourself.

    One of the most useful pieces of advice I know of is that aptly named "The Serenity Prayer."

    God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

    I keep a copy of it taped right to my computer monitor because I find it as useful for me as a dementia patient as I very much believe it is for caretakers also. I remind myself regularly that suffering is a choice, i.e., we suffer when we resist what is. (The choice that I prefer is what I call my "gratitude practice" where when I find myself stressing over something I can't change, I work on finding things in the situation that I can be grateful for and switch from worrying about what I can't change to thanking God for the good things in the situation. That may not work for everyone but it works well for me.)


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