Monday, November 16, 2009

No normal for us

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.


karen said...

I have to be thankful that my son is 19 he does not need me anymore. I will fill sorry for myself. I can't come and go when I want. I have to wait on my son to come home from class or my sister to have a day off from work . When it gets really bad I have to call my brother of my ex-sister in-law and it has to be really bad to do that . They are more trouble than it is worth sometimes. You know what I really hate . If I have thanksgiving here so everyone can see mom . I still have to do all the caring for her and the thanksgiving stuff. That sucks. Now I just tell everyone I am not cooking.But I do either before or after Thanksgiving. Good luck and I hope you can get away with your babies. I just got mom back for a 5 day stay at the Hospice home. It is called restpit. Can you get that. It was great.

Karen H said...

Karen, I COMPLETELY understand the realities of the holidays, as I share the same situation. What amazes me is that family that share those holidays with us, are so OBLIVIOUS to the help we need. I am blessed this year to have Thanksgiving dinner made for us. We will be celebrating Christmas the following week when my sister and her family come in and they help us with EVERYTHING. It's quite different when it's my brother that shares the holiday with us. Maybe it's just a "guy thing"??!! I'm not sure what it is, but it's frustrating nonetheless. Try to have a relaxing and enjoyable holiday. There IS alot to be thankful for. As for respite, we do have that option, but I am saving the time for a few things we have planned for next year. I'm glad you were able to get some rest. Good for you!!!