I've said it before....I can go long periods of time feeling ok about things and then WHAM! everything gets tough to face again. Nothing has changed healthwise for Tim. We continue to plug along trying to find the right medications to help with his behaviors. But here I am feeling helpless, frustrated, and back to questioning "Why me?"
I think it's partially the month of June. We "celebrated" our anniversary last week. For me that's a really tough day to "celebrate." You're supposed to be able to look back at that day you got married and all of the wonderful things you've shared since. All I can seem to see on that day now is everything that I lost. It's not your typical wedding anniversary. Yes, we went out to dinner but it wasn't a romantic night out. Any trip out to a restaurant is hard now as sitting still for any length of time or holding a conversation are not things that Tim is able to do well anymore. We got lots of anniversary wishes and reflections of how beautiful our wedding day was and I just found as the day went on I just felt more and more sad.
And then Father's day rolls around. This one is tougher for me to watch the kids go through. I don't think that they find that particular day any harder than any other but both of them have talked about how their daddy isn't really a father in the way other kids have a father. He can't help with homework, or fix things that need fixing, he doesn't follow when they try to talk to him about something happening with their friends, and let's face it when they are home alone with him they are the ones in charge. And since his temper isn't always the best, they have to be very careful about what they say and do around him. Unfortunately he also doesn't like to be touched so hugs and kisses are pretty much out too.
Now comes my birthday. In the days before the brain tumor symptoms even started, Tim was so invested in surprising me with something on my birthday. His generosity always amazed me and it was so nice to be surprised. Now that he can't drive, the kids are in charge of trying to find me something on Amazon and he doesn't really have any part in it. I definitely miss those days!
I have to give a shout out to my most amazing friend, Laura Catlin, who is giving me exactly what I want for my birthday this year - time with friends. Time to feel as normal as possible, hopefully time to laugh. I honestly don't think I could make it through all of this without times like that.
It has been a rough couple of weeks and for someone who's not usually a crier, there certainly have been a lot of tears. If anyone is available for a hug, I could sure use a few! :)
Wednesday, June 19, 2013
Friday, June 7, 2013
A Way Overdue Update
Wow! I really haven't posted since April? Where has the time gone!?
We finished up eight weeks of cognitive rehabilitation therapy with a speech therapist a couple of weeks ago. Tim is now more independently going through a morning routine without so many reminders from me to eat breakfast, take pills, shower, etc. Still not perfect but definitely better. He is also helping out with more chores around the house although some days are still better than others. Even though the sessions have ended, Tim is still able to participate in a beta version of therapy on the ipad that his speech therapist can check in on and make changes to without having to see us. I think it has been really good for him.
Unfortunately we are still on the medication rollercoaster with no real change to the pounding on the leg. The beta blocker didn't make any change and was lowering his heart rate too much to continue with it. The next med, Risperdal, sent him to the emergency room with a stiff neck so that one was abandoned. He's now been on Tegratol for two weeks. We haven't seen any changes in the leg pounding but there have been other positive changes. He isn't losing his temper as easily which means we won't be having to tiptoe around him all of the time. And his fidgety behaviors (rocking his body back and forth mainly) are definitely decreasing. Nice to see something positive!
In an effort to try to figure out how to live with the leg hitting, we made some big changes to the house. It became important to find a way to give Tim his own space so we completely flip flopped the playroom and living room. The "new" living room the girls have started calling the DR (daddy's room) and we are going to have a door put on it as well. It's a space where he can hang out and watch tv and no one will bother him and we will be able to get a much needed break from the constant leg pounding. So far it seems to be working out well. The kids are also enjoying their new playroom after I made a trip to Ikea for new furniture to hold toys and things as well as putting down a new cushy carpet. All in all some good changes.
On my part, things have been going better for me. I seem to be seeing friends more than I was which is always the best therapy for me! I also started knitting with a group of friends (and relatives) and never knew that I would love that so much! We have done really well with sticking to meeting every other week and its so great to have that to look forward to. We had a multi family cookout at our house this past weekend and it's times like that that give me a feeling of a little normalcy. Now I just have to make sure things like that keep happening!
We finished up eight weeks of cognitive rehabilitation therapy with a speech therapist a couple of weeks ago. Tim is now more independently going through a morning routine without so many reminders from me to eat breakfast, take pills, shower, etc. Still not perfect but definitely better. He is also helping out with more chores around the house although some days are still better than others. Even though the sessions have ended, Tim is still able to participate in a beta version of therapy on the ipad that his speech therapist can check in on and make changes to without having to see us. I think it has been really good for him.
Unfortunately we are still on the medication rollercoaster with no real change to the pounding on the leg. The beta blocker didn't make any change and was lowering his heart rate too much to continue with it. The next med, Risperdal, sent him to the emergency room with a stiff neck so that one was abandoned. He's now been on Tegratol for two weeks. We haven't seen any changes in the leg pounding but there have been other positive changes. He isn't losing his temper as easily which means we won't be having to tiptoe around him all of the time. And his fidgety behaviors (rocking his body back and forth mainly) are definitely decreasing. Nice to see something positive!
In an effort to try to figure out how to live with the leg hitting, we made some big changes to the house. It became important to find a way to give Tim his own space so we completely flip flopped the playroom and living room. The "new" living room the girls have started calling the DR (daddy's room) and we are going to have a door put on it as well. It's a space where he can hang out and watch tv and no one will bother him and we will be able to get a much needed break from the constant leg pounding. So far it seems to be working out well. The kids are also enjoying their new playroom after I made a trip to Ikea for new furniture to hold toys and things as well as putting down a new cushy carpet. All in all some good changes.
On my part, things have been going better for me. I seem to be seeing friends more than I was which is always the best therapy for me! I also started knitting with a group of friends (and relatives) and never knew that I would love that so much! We have done really well with sticking to meeting every other week and its so great to have that to look forward to. We had a multi family cookout at our house this past weekend and it's times like that that give me a feeling of a little normalcy. Now I just have to make sure things like that keep happening!
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