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, June 28, 2011

Holding Pattern

Until this morning Hubby and I have been in a holding pattern for illness and caregiving.
Can't say anything was good, can't say anything was bad.
To me, everything seems 'normal'.
It's funny what caregivers consider 'normal' in our lives. Or at least what I consider 'normal' in mine.
Especially caregiving for dementia.
Lewy Body Dementia takes so many things away from Hubby and keeps them out of reach from me.

Hubby still struggles to admit his limitations. Sometimes I'm sure he knows he has problems and other times I really wonder if he is aware of them.
He can be quite stubborn about many things. For instance. I have been trying to get him to agree to a day facility for just a few hrs a couple of days a week. I tried to encourage him by highlighting the fact that he can get out of this house and associate with other people and have some time away from me.
I tried to argue (I know I know!!) the point that it would give me some time to get out too and maybe even join a health facility again. Something I need to put back into my life.
I could do things alone at home but lets face it. The reality is I really suck at self motivation.
I need people in my life.
But Hubby will have no part of it.
His reason?
He doesn't want or need to go there but if I want to go alone I could.
Uh, sorry Hubby but that's NOT happening.

Then there are the other times Hubby will admit he can't do something like ride his bicycle or walk up the driveway with me to check the mail. There are times he struggles to just walk across the bedroom and asks for help.

When we get the lap over is when he is insistent ( a mild word) that he has the ability to drive, stay alone, etc etc in one breath and in the second, needs me to fetch him something to eat or drink because he can't get it himself.
Truth - This is the times when I'm annoyed with caregiving.

This is our normal though.
This is the holding pattern we seem to have been in for a little while.
This is also the time when I seem to collapse in on myself.
Feeling suspended in time and finding it difficult to move forward.
Wanting to hold on to moment yet waiting for the next change.

Hubby's most recent loss has been the placement of his wedding ring.
Hubby doesn't wear his rings all the time and the last couple of times he has, he has asked me which hand the wedding ring goes on. He says he can never remember. I tell him, believe me, I will remind you and not let you forget. We smile.
This morning he can barely walk and needed chair assistance to and from the bathroom.
There seems to be no reason to this sharp decline but Lewy doesn't really need a reason for anything.

In our holding pattern Hubby has felt like sitting out on the deck with me a couple of times in the evening.
One night we sat out and dreamed about things we would like to do. They weren't big travel plans, just home remodels and yard work. The expensive kind of course LOL! Hey, I said dream!
It felt good to dream with Hubby.
He still holds hope for his future.


  1. I know what you mean about motivation...that was one thing I loved about being part of a health facility. There was accountability, and LOTS of motivation, especially from a really great girl that worked there. I need to do something, but it will have to be after summer...don't think that taking the kids with me would be a good idea.

  2. Tish,

    I KNOW that girl LOVED motivating you!!! What fond memories she holds! :)

    It actually crossed my mind to take Hubby to a gender shared facility but quickly decided it would be a no go when he said he wasn't interested.

  3. Getting my mom to agree to a day program was out of the question for her too... Initially, she fought me.

    I knew that she needed socializing with others besides me.

    We hired a care giver with the intent that once she trusted her, she would take my mom to "school."

    It worked.

    we had hurdles... Mom wouldn't eat their food; she believed that they were out to poison her. I packed her lunch.

    She started out going half days a couple times a week. I had her go on the days that they had entertainment come in.

    Mom grew to LOVE it and her friends that she had made.

    I told my mom that it was a school to strengthen her mind and body with simple activities. She began to improve and the quality of her life was better than before. Weekends were rough, she missed people being around.

    The break was life saving for me. I was stressed beyond belief... I understand. there's always a way... Don't give in to Hubby's NO's... Keep trying.


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