Wednesday, June 30, 2010

Alone

For those of you that read the comments and those that are taking care of anybody with this damn disease you understand what Deb is talking about. Our lives take on a new direction. Not only are those with the disease withdrawn but so are the family members and the caregivers. We are withdrawn from society because we can't get them to go out or hold a conversation anymore. So yes we sit and watch tv shows and do things that we do not really want to do because it is what they want to do and it is hard. Try to keep doing normal things for you. If only it is to get out to the grocery store, or have lunch with a friend. We have lost our best freinds. And we will lose them again. Conversations are hard because they either do not want to talk or they can't get the right words out. We play charades alot. Joe will want to say something and usually starts ok but he ends up pointing or grimacing and I can usually figure out what it is he wants. As with everything else it too will go down the drain. Joe started this to let everybody that wanted to, realize what was happening inside a victims head, understand what they were going through. I am glad that he has helped.

4 comments:

paula said...

I love both of your willingness to share. As a family member, that lost an aunt when she was 65 (diagnosed at 55), and now I watch my dad to see if he is "normally" forgetful, or if he is forgetting, I love reading and knowing that this disease is thought so much as a memory diseas, but we all forget that this is a LANGUAGE disease also. As a nurse I work to teach and care for those Veterans who are dying of this disease. I watch Joe on the Alzhiemer's Project several times a month, read this blog, and we all must understand that this is a loosing process. Language and the ablitiy to communicate are lost and nothing is there to replace it. The stress and demand on the caregivers are tremendous. I can assure you that people who end up in Long Term Care are not forgotten, but some of the most cared for people in LTC, we become their family, because we didn't know them before the disease it is easy to love who they have become, not miss who they were.

karen said...

Alone says it all.

Peaches said...

Lynn,
I cared for my father for 6 years and the conversation and the activities were like an adult reversing to a child...like Benjamin Button. I found that the moments of tenderness with my father when he would be affectionate with me was his way of talking to me. It was interesting that while no one could read his body language or understand what he was saying I did. The nursing staff and my family relied on me as their translator. Its funny how close we are to our loved ones that we can do this. I am glad you are posting on here as well.

theadamos said...

We are now in the midst of taking care of our father although our mother does most of it, because in his words, she is everything to him. But it is now at the point where he is just very abusive verbally and always argumentative. Comes up with stories that have never happened and won't believe us either way if we agree or disagree. It is a sad world when as people get older and have this horrible, horrible disease that there is no way for a family to get help without going into debt or losing all of their money that they worked so hard for. I hope someday(but never in my dad's lifetime) that this happens. Thanks for listening. I pray for all families that someday there is a cure.