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, March 1, 2011

Caught Off Guard


I've said before that Hubby has had a downturn.
His Lewy Body Dementia has caused him havoc in his cognition.
I'm having a difficult time sorting out his words and keeping track of his confusion.
There seems so much of it that it is now the normal.
We have lots more "people" in our house and one guy that is always looking for someone and another that preaches. I told Hubby that the preaching didn't bother me as long as the guy preached the truth ;-)
Hubby thinks it is.
The "people" are spoken of more often, maybe they have been here all along just not mentioned.
The GOOD thing about them is that they do not upset Hubby.

Hubby asks me more often where we are. I always say and he either gets suspicious of my answer, as if I'm trying to fool him, or seems surprised. He never gets upset about it.

He startles easily, has for a while actually but I can be looking right at him and speak to him, Hubby will jump high enough to scare me!
We leveled out or just adjusted to the new level of confusion so the ride, although downhill, is manageable.
Things are perking along.

What caught me off guard is, that tonight, I experienced a bout of lonliness.
As if it came out of the blue and landed on me, seeping through my eyes.

I'm not whining, I thought why would I even bother to blog about that feeling.
It's just one feeling.
It will pass.

My goal was to be honest about my life with Lewy Body Dememntia.
Tonight my life experience is that I feel lonely.
And you know what?
It stinks.
Tonight I miss my husband even though he is in the same room as I am and will sleep in the same bed as I will.

But you know what else.
It's just a feeling. It will not dictate my life.
I will probably miss him many more times while he is here before I miss him when he is gone.

I will, however, be OK.


  1. I often miss my mom and she's still here... it seems to be normal for the Care Giver to feel loneliness for our old way of life with our loved one.

    For me, I miss talking to my mom. We always talked in the morning over coffee and breakfast. Now, we can't have those talks anymore because my mom usually has no idea that I'm talking to her or what I'm even talking about.

    It's OK to cry, it releases a natural pain reliever into our blood stream. I think I have become addicted to crying just for the natural pain reliever!

    The confusion and the people have been part of our lives for so long now, I think I'm going to miss all these "People" when my mom does leave us.

    Socializing has helped my mom a lot. She is with people all day (other than me) who do activities that are stimulating. My mom is still confused and gets agitated, but not as often since she began Adult Day Care.

    Getting her to go to Adult Day Healthcare was challenging, it took us 6 months to get her to go every day of the week and take the ride to and from the place. It was a long and painful 6 months, but it was worth it because my mom has more fun.

    I know it's challenging to be a Care Giver and watch our loved ones fade into the light. Doing the job 24 x 7, 365 days a year - is enough to make the care giver lose their minds!

    I wish I lived closer so that I could help you. You are in my thoughts and prayers. You are an incredible woman who knows LOVE ... there's definitely a spot reserved for you in Heaven.

  2. I agree with Susan's thoughts. I experienced those same moments with Mom and missing our old interactions. However, I did find comfort in the new ways we interacted and the fact that she seemed to enjoy those times also.

    You and Susan both are walking a hard road, but are doing a great job. I think that your blogs are important so that others who come along and read them know that others have walked the road they are on and understand. Thanks for sharing your life.


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