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.

Friday, May 20, 2011


I sit staring at this blank screen for days.
There is nothing to say, nothing new, just treading water.
Numb may actually be a better word.
How do I move forward?
When did I lose myself?
I KNOW how important it is to take care of me, yet I can't move to do it.
What is it going to take?
I feel like I'm glued to the floor watching the days whiz by.
One after the other.

I don't make a Dr appointment because I can't depend on the aide service to show up on time, at the right time or at all.
I don't hire outside help because Hubby's needs are more than just sitting much of the time and he gets agitated that he "Don't need no d*** babysitter.
He is adamantly opposed to any kind of day facility even for a couple of hours.
Both the Dr and I have spoken to him about it. 
I don't even go outside for periods of time because my fear is that Hubby will try to come looking for me and get hurt in the process.
Depending on family members is not easy, time constraints, distance, age, just a few factors working against me.
When did I make myself a prisoner and more importantly, how do I break the chains?

I hope this passes soon.
I'm getting concerned.


  1. Dear Kathy, I feel the same way.

    I am fortunate that we can depend on our care workers. My mom goes to day care, but they are now sending her home early because she is difficult for them to manage.

    I am waiting for a bed in a home to open. I can't do this level of caring anymore.

    Daily I pray for death to come soon for her, this is no way for any of us to live.

    Yesterday, I was able to see a doctor. My health is not the greatest; stress is a killer.

    I know how you are feeling... I am right there with you wondering how this happened.

    My dad always told me that when we feel that there's no hope, no end... A miracle happens. I believe that you and I have a miracle in the works.

    Big hugs!

  2. Kathy, I've been thinking of you lately and ache for you feeling this way. I wish I didn't live halfway across the country -- I'd watch Hubby while you got out and he could just wonder who this short, strange woman is. :-)

    Please remember to take care of you. I listened to a Caregiving Journey program the other day and the guest said she finally had to ask herself (after becoming exhausted caring for her parents): How much grace do I give myself?

    Give yourself some grace, Kathy. You deserve it.

    (You too, Susan!).

    Take care.

    caregiving. family. advocacy.

  3. I agree with Trish...you deserve some time to yourself too. I know that there has to be someone you can depend on for at least an hour or two, to go into town and meet an old friend for coffee (I'll volunteer) ;) or go get your hair "did" or a pedicure...or just go sit in a quiet place and pray, read, or just reflect.

    You have to take care of yourself too, Ms Kathy!!


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