Tuesday, May 14, 2013

What's in the future?

As my brother's cognitive abilities decline, for reasons unknown to us, I am being forced to think about what comes next.  My first thought was to try and find out just what is causing the decline in the first place.  I've read everything I can about psychotic episodes and one article really rang a bell.  It said that the more episodes a person has and the increased severity can lead to brain damage.  Mike has had several hospitalizations over his life time but only two psychotic breaks.  The first one only lasted a few days and he fully recovered.  Of course he was more than twenty years younger.  The one he had in 2010 was long and debilitating and he has never recovered to his previous level of function.  In fact he has been a different person altogether.

I think I kept trying to get him to be as he was before and have only recently accepted the fact that it will never happen.  Every day I see him fading away a little more.  He is no longer able to handle his finances or simple tasks.  But he tries so hard.  He will look at you with the most confused look on his face and blank eyes.

Yesterday I went over after work to get his mail and see if he needed anything.  He hates being alone and wants company all the time.  That's why he is constantly on the phone.  He cried a little over his friend Lloyd but I reminded him of all the great friends he made through Lloyd.  I told him the best way to honor his friend is to live the happiest, most joyful life that he can.  

He asked me why his memory is so bad and I didn't have a good answer for him.  I just said that it just happens sometimes to people as they age.  I told him he is lucky because he has friends and family that are there to help him.  I told him my goal is for him to live independently for as long as possible.  I did say that I can't guarantee it will be forever though.  That my main concern has to be his safety.  

In the back of my mind I have thought the next phase would be for him to live with Ron and I.  But when I really think about that my greatest concern would be that he might outlive me or that my health might prevent me from being able to take care of him.  It might be more compassionate to transition him to a nursing home rather than my home.  That way if anything happened to me he would already be settled and wouldn't have to go through such a trauma twice and I wouldn't be here to help him. 

I don't know what is ahead or whether we will be able to find a home that would even take him.  I almost believe he would have to be so far gone that he wouldn't realize where he was before we'd be able to get him to go.

We have a lot of questions for his psychiatrist Thursday.  I wish someone would do some testing to determine if he has brain damage or is this dementia or what.  Information is power and I could use a little power about now.



Olga said...

You know, my mother had dementia at the end of her life and I never associated it with schizophrenia, but now it seems obvious.
My brothers were totally appalled when I insisted it was time for a nursing home for Mom, but she adjusted so well and so very quickly. I believe she was happy there. She had attention from the staff, three meals a day with ice cream for dessert at every one of those meals, and lots of music.
You will know what to do when the time comes.

Deb said...

Whatever you do, you act out of love for Mike and in his best interest. Since he doesn't like being alone he might do very well in a group home setting.

I have a relative in TX who (with her husband) operates a group home for eight young men (18-30) with developmental and/or severe physical disabilities. They are like a big family. I don't know if this is an option open to Mike or not, but it might be worth looking into.

Right now you have a very full plate, with Ron ill and the responsibility of Mike's care. Please take care of yourself.

Gentle hugs

oklhdan said...

Olga, I've found several articles on schizophrenia and dementia. There seems to be a connection.

Deb thanks for the hug!!! There do not seem to be any group home options where we live and nursing homes haven't wanted someone with a psych diagnosis but we will continue to search!