The diagnosis is in. Dad has frontotemporal dementia. For those of you that have no idea what that is...like me, there are 3 big hitters in the neurology world of alzheimer's. There is Alzheimers, Lewy Body dementia and then frontotemporal dementia.
After many doctor visits at the University of Utah, many tests, many talks to social workers, we are learning to deal with this disease. There is no medicine to help. There is nothing to make it slow down. It is a fast moving dementia unlike Alzheimer's that takes a long time. He knows me sometimes and sometimes he asks if I am his daughter. That is the time it makes me the saddest. He doesn't remember his grandkids very well. He remembers names, but then does not recognize them when they are with him.
What to do now? That's where we are at. We are not sure of where we are headed or what lies in the future. Day by day, is the way we are handling it.
This I know. Family is the only thing that matters in this life. If you have a bad relationship with family members, then shame on you. Family is the frosting on the cake of life. I am so grateful for my family...extended and immediate. They are my strength and they are the reason for my happiness. Whether it be spending time in Vegas splashing in the pool with them, the road trip there-laughing with my husband and talking just to him with no interruptions, or quiet moments in a backyard where families are joined, it doesn't matter. I am grateful for each and every one of you that are part of my family. Family is all that I need in my life (along with some diet pepsi and chocolate). Ahhhh, that is perfection.
Here we are....and this is our blog. Family is our passion. This is my attempt to document our lives. Ron and I raised three kids, who are the pride and joy of our lives. More than anything in my life, I have loved being a mom. It has been the funnest and hardest time in my life. I love my family. I love being a grandma now and look forward to each and every little spirit that comes into our family.
1 comment:
Hi Julie,
Your blog appeared in my Google alerts because the subject is frontotemporal dementia. I grieve with you over the diagnosis, and wanted to give you the link to the best support group I know of in case you didn't already have it, and that's http://www.ftdsupportforum.com/.
I lost my mother to FTD last December and I still miss her every single day. My blog is http://www.leefleming.com/neurotwitch where I write about it a little bit.
And I just want to let you know that, if you haven't already, you should start getting things like respite care into place now so you can get a break when you really need it later (we have a huge, close family as well, but sometimes family is just not enough).
I wish you the best. Lee
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