Thursday, August 19, 2010

Personal Update, Almost End of Summer 2010

People ask me how my dad is doing after his stroke and how was my family doing, and for most of the summer, the answer was terribly.
There were moments of something sweet or interesting - but mostly it's been just plain devastating, and often, it seemed like pure hell.

Dad came home 2 1/2 weeks ago and the first 2 weeks were the worst and hardest part yet. It's a fulltime job caring for him as he can't do everything for himself, and he's faced with living in a world that isn't made for him in his wheelchair or his inability to speak. We had to try and figure out how to be nurses and give medicines and take care of all dad's needs. Every tiny desire became impossible, dad was so frustrated, and he couldn't communicate what he wanted or needed so everyone was just really angry, upset, and exhausted. Dad's physical therapy at the rehab center focused on his basic movements and needs, but not so much on how he can really live outside the center. We've been pushed to our limits every single day, and mom is also trying to manage a stressful fulltime job.

But this week things were getting better. Specifically today. A physical therapist comes into the home and shows us how dad can do more things for himself, and how we can help him move around more easily, and we have figured out how to adjust the house better for every day life - and it's starting to pay off. It's been more calm the past couple of days, and the happy moments were more frequent.

Today seemed like the first good day. Sure it had it's share of regular major obstacles and frustrations - but we have become used to big obstacles. We felt most happy because dad has more strength and balance in his physical therapy, and we don't think he's too far from being able to walk with a cane, at least with our help. We have figured out how to manage more things, the house is better set up, and dad is learning to calm down and give us a break here and there. He really wants to do all the things he used to do. Him not doing the things he used to do has been one of our major obstacles - we've had phones shut off because we couldn't figure out how to log into the phone account, broken things, things we couldn't find, confusion over bills and taxes, etc ...

Today we wanted to move some of my furniture out of the garage where it's been all summer and into the van - but the garage door wouldn't open! The mechanism was broken, and the garage was so full of chaos and junk it seemed impossible to get someone in there to fix it or troubleshoot. Mom and I were inside the garage trying to pull on the door and press the button at the same time - and all of the sudden we got it up a bit, and then we saw feet under the door! Dad wheeled himself outside and was trying to help from the other side! He was laughing so hard when we saw him there. It was a pretty good moment. He laughed almost as much as when he tried to help empty the clean dishwasher, and picked up the whole basket of silverware and dumped it into the drawer. He looked at me and laughed his ass off, and later mom told me he used to do this before the stroke.

We frequently have dad participate in things, ask him for his input, and his insight is often what we need - there are so many mysteries to solve. We had to remove the seats from the van, and dad had to help us solve that mystery too. He can't just do it for us or tell us how, and it wasn't obvious either. We have to work together with him and figure out the puzzles of what he is trying to tell us and what we are trying to do. These things come up on a regular basis, and dad feels really good when we can figure things out with him - he communicates with gestures and sounds, and can say yes and no.

And dad loves mom's hugs and attention and was so excited mom sent him an email that said "I love you." He checks his emails all the time, though he can't write them yet. He reads well.

Anyhow, I'll be moving back into the city soon, and the idea of moving without dad is one of the things that has made me cry the most. In the last 11 years, me and dad have moved my apartments together - and I counted - this will be my 9th move in 11 years! I've only lived in one apartment for more than a year and it was my favorite one on Delancey Street. Moving is normally our bonding time. I am a daddy's girl and we do lots of heavy strong work together, and he builds things custom for my apartments, we assemble furniture together, he helps me hang shelves and things like that. Then we go eat something healthy because my mom and sister don't like that hippie food. He worked so hard and I appreciated it so much, but he knows that now, he earned us working hard for him too - and sometimes he feels very happy and moved by how we all work together. It's sad for both of us, but I hope maybe next year. It's unfortunate that elevator apartments in nyc aren't affordable, it would be nice if he could visit me or be there during the move.

I accept by now that dad won't help me move me this year, but it was something I thought about since the day of his stroke, that I wasn't ready to lose my dad or these things that we do together.

I'm going to get my life back soon. It's been less important and I'm certainly in the position where I could spare a couple months and give them where they were needed most. But - this experience has made every little personal indulgence seem a luxury, and the minutia of ordinary days will be deeply appreciated upon return. I wonder what my life will be this year. I wonder what my social life, my school life, my creative life, my home life will turn into.