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.

Thursday, October 28, 2010

No place to hide

I'm very tired all the way to my heart.
I'm sick to death of Lewy.
It invades every aspect of my life.
It keeps me trapped in my emotions, thoughts and time.

I'm trapped in my frustrations as I don't want to take them out on Hubby.
Some days he gets the short answers though.

I'm trapped in my thoughts and concerns as Hubby wouldn't understand them so who do I have to talk to?

I'm trapped in my time away. Leaving Hubby with anyone for any length of time due to falling and incontinence issues is difficult to almost impossible to do.
He is still a proud man and having these issues in front of anyone else but me is difficult for him.
Even though he doesn't remember us getting married, he still feels comfortable and safe enough with me to accept my help. He has even refused the aids assistance with anything but bathing.

I have become frustrated with his insistence on removing is clothing before he ever reaches the toilet leaving me with a mess to clean up several times a day BUT, I have found that as soon as he heads toward the door I can gently remind him to keep his clothes on until he gets there and that seems to work.
I suppose it's not all bad.

Probably the hardest thing about Lewy right now is Hubby's realization of his mortality.
I've seen him cry more than once lately.
Just last night he asked me if I had noticed he was getting worse.
I almost wanted to chuckle when he said "I don't know if you notice it or not, but I think I'm getting worse."
I sat close to him as he tried to communicate with me.
He was concerned that his health was not fair to me.

I assured him that I was here to care for him by love and choice.
As long as I'm able to do so I will.
My goal was to keep him at home and feeling safe, comfortable and loved.
His tears fell as we spoke and I kissed him.

My tears fell later so he wouldn't see them.

I'm leaving this post on a positive note though.
A recent visit to the Neurologist awarded us some new meds to help combat REM sleep disorder. I am always reluctant to give new meds. If anything I would like to eliminate as many as possible but every time we cut back we hit an emotional snag.

But that's not the positive.
The positive was when I asked the Dr to specifically prescribe the pull up type undergarments for Hubby.
The Veterans supplies these items but only the tab type unless Dr specified and with explanation.
So I explained that the Dr would have to specify the pull up type and the reason I requested them which is, that to some degree Hubby is still mobile. He can still remove his clothing on his own and the tab type clothing are difficult for him to manage. There are also some dignity issues involved with that style. I wish to retain as much of that as I can.
Dr looked at me, agreed to my request and said, "You're taking excellent care of Hubby."

Even though some days I feel like I'm not, it's always  good to have re assurance from the professionals that can change your life with the stroke of a pen.