If there's one thing I can't do, it's provide a "normal" life for my children. Since Mike's diagnosis, we have never been able to pick up and go. Our life has always revolved around someone else's schedule - usually Mike's aides. Let me make it clear, that I do not want sympathy, I just want understanding. The holidays are coming up and chances are that Mike's aide will not be here, understandably she would want to spend time with her own family and friends. This is true for Thanksgiving as well as Christmas. As much as I love Mike, his care will take up the entire holiday day, so how much time really will I get to spend with Courtney and Brandon?
The simple things in life for most families, are an impossibility for us. This is because we CHOOSE to care for Mike at home, but even though we CHOOSE to take care of Mike at home, it does not make us less human, with emotions like envy and sadness for all the things other families can do, at a moments notice.
Thanksgiving break is coming up, and many of Courtney's friends are coming home. In planning their long weekends back, many are planning family trips/events in order to catch up on time with their families because they have been away at school. I have nothing to offer Courtney, besides maybe a movie and a day out for lunch. It isn't exciting and it's something that can be done anytime. My children are not complainers, but it hurts them when we can't steal time away to do something fun and different. The last REAL vacation we took was about 4-5 years ago. Beside our overnight visit into NYC in August, we've done nothing else.
I feel so bad that I cannot give my children the excitement and spontaniety (sp?) that they so deeply deserve.
This is our life with Early Onset Alzheimer's Disease. This IS our reality.