It Takes a Village

October 27, 2006 Friday
My goal this month was to figure out what I could do to generate some income. I have about 15 good solid ideas, but I’ve realized that I don’t want to be away from Ben much, whatever I do can’t stress me out and I’m not as concerned about making big bucks right now as I am in spending quality time with my husband.
So many people have suggested that I do something like publish the blog. So after talking with my friend Vicki and then with Cappy, I’ve decided to put something together and self-publish a little book using the blog that I already wrote which was raw and un-edited- like my diary- and then go back and reflect on where I’m at now that I’ve got 7 months into this rehab deal. There is hardly anything out there in the book world dealing with the anoxic brain injury- there are many books dealing with head injury like being in a car wreck.
My sister Jane is going to help me put it up on a website- that way people can google anoxic brain injury and find my website and order the book on-line.
My goal is to have my book ready to go by December. So it’s not going to be my literary masterpiece- just a shoot from the hip, reflection of what I’m learning about the process of recovery.
Also there is so much that didn’t get said in the blog- so many important people that I didn’t thank- this will give me the opportunity to do that. I’m finding it therapeutic to go back and read what I wrote already, as well as writing about how I feel now. I think I’m going to include a section on what I have learned so far.
I’d like to use real names with your permission and possibly some photos as they appeared on the blog- again only with your permission of course. If for whatever reasons you don’t want your name or your photo, just let me know. If you want, you can chose your own alias.
I’m also going to need someone to write an introduction or preface- anyone interested? And some people who will be willing to read the galley and write a blurb I can put on the back cover. And so many of you emailed me comments on the blog that didn‘t get posted- I was hoping that some of you would like to write some of your own reflections and have them included in the book. (Like John’s response to Ben impersonating a general was hilarious- but I don‘t think anyone got to read it.) If so, I’d need your writing by November 20th so that it can be included in the book.
It’s taken a village for sure, I could not have not done this alone. And I will need your help to make this actually come together. Thanks everyone. You’ll be hearing from me- about the permission deal and about the possibility of writing something for the book. Love, B

Putting it in perspective

October 18th, 2006
Went last night to my first in a series of Tuesday night classes for un-paid caregivers offered by my favorite geriatric social worker, David Robinson. There were about 25 people there and we went around the table telling our stories. Man oh man, it was enlightening. So many people there were in desperate situations. The worst was this couple who had just remarried and now had his mother with dementia and his disabled sister staying in a hotel room in town- they had just gotten back from Florida where his mom and sister had been abandoned by his brother and his wife when they got a divorce. So many sad stories. So much family dysfunction. So many unhappy marriages. My heart really went out to the spouses who were in unhappy relationships with their spouses and their families before their crises. I can’t imagine how stressful it would be if Ben was mean to me. Gosh we’re so lucky. Ben truly appreciates me and recognizes what I am doing for him. He’s never been angry except when I wouldn’t let him drive or smoke. Now he’s smoking a bit and he seems to understand why he can’t drive, we’ve had no arguments, for which I am truly thankful. I HATE arguing.
I’m still working on massive paperwork. Right now working on the VA stuff- since Ben was in the army during the Vietnam era, he qualifies for benefits now he is disabled. I’m not sure what we’ll get, but I am excited to find out. It was a bit difficult for me to fill out the paperwork that they gave me back in March since Ben was obviously no help. He used to think he was still in the army all the time. Usually he was a bird colonel or a general of course. Our case manager is wonderful and he loves the stories of Ben’s adventures as the general and almost a spy.
I’m also applying to get our property taxes frozen but they want so much paperwork it’s absurd and the assessor’s office so far have been the least helpful agency to deal with.
I’ve been trying to get free or cheap legal advice but keep hitting dead ends. I just bought my first month of pre-paid legal. It’s only $17 a month and supposedly we can get everything we need done through them like our wills and durable power of attorney, plus have all the free phone consultation we need. They’ll write letters for us etc. I’m anxious to see how we like them. Will keep you posted but I don’t see how we can lose. The elder law attorney who everyone recommended charges $200 an hour and no free consultation. We’d be into it for a couple of grand in no time.
Trying to do our 2005 taxes continues to be challenging to say the least. My stress level rises with the T word anyway, and now we are in such a mess with moving stuff around in Ben’s office when we had to sleep there for awhile etc. Fortunately our accountant Kevin has a good sense of humor and knows us. Kevin says Ben’s his most colorful client and claims that Ben sent three of the IRS auditors into therapy prior to this. He says he’d love to see them trying to audit Ben NOW. I’ve GOT to figure out how to get that scene into a movie- what a riot!
I’m going to take the train up to see my sister Jane in Burlington next weekend. It’s hard to get away, but I know it’s good for me. Ben’s well taken care of here. That’s another thing to be grateful for- last night I heard horror stories of caregivers. We are fortunate to have so many friends- it really makes a difference to know the person who is coming into your home. We have really lucked out in the caregiving department.
Ben continues to improve. He’s been sleeping a lot lately which I see as a good sign- I guess that’s the time his brain can heal the most- like plants growing when it’s dark. He’s doing difficult (4 digit) math problems right now and looking at the atlas- we can’t find our world globe. I just ordered him a large print world atlas on half.com. I need the large print too as last week I turned officially OLD- I can no longer read the phone book without reading glasses. Dang!
My little sister Sarah and my niece Abby are coming from New Jersey for a visit in November so we are looking forward to that. So all in all, life is pretty good- we keep plugging along and it seems to be uphill. Knock on wood.

PEACE and SLEEP

October 13, 2006
It feels like ages since I’ve blogged- for which I have received many complaints from my friends. Ben’s upstairs sleeping- he took a nap at 4:00 and now it’s 8:00 PM and I am debating waking him up or letting him sleep. I suppose one of the reasons you haven’t heard much from me is there hasn’t been too many episodic adventures around here in a while but even as write that …
So anyway, we’re settling into more of a routine around here- thank goodness to the COPES caregivers, what we call Ben’s ‘assistants.’ Now we’ve got 2 primary and 2 back-up assistants- they all bring something new to the table and they are all excellent. We are truly blessed. I’m adjusting to having the help and trying to learn to pace myself so I don’t burn out.
Even though Ben’s on the upward swing, we’ve still got a long way to go. And it’s hitting me that now I am going to have to be the one to keep our little family afloat. But I have to figure out something that isn’t stressful and doesn’t take me away from Ben much. That pretty much rules out real estate for now, but maybe I’ll get my license just in case. But I’ve had the real estate class on my computer for how long? A 60-hour class and I’ve only done 2 hours. And I can’t even pass the first lesson of a class I used to teach. So, what does that tell me? Pick another direction perhaps.
Writing is what I truly want to do, but it’s not practical for making $$$$ quick as far as selling a novel goes. I’m starting to query some magazines with ideas for articles. I’ve written a decent query letter, I think. But now I have to learn how to type a business letter- all the stuff I always had a secretary do- I am hopelessly inept at figuring out how to put the address into WORKS so it’s saved. Eeeeeeekkkkk!
But the good thing is I got out a whole TON of applications and paperwork for all of Ben’s stuff and programs we can apply for out this week- like the City of Olympia has a program for repairing your house with no interest and we wouldn’t have to pay it off till we sell. So we’ll see what becomes of all that. You can’t win a the lottery unless you buy a ticket, right?
I’m still moving the furniture around, trying to figure out what’s the best set-up for our new lifestyle. Now we’ve got a dining room table so I’m happy.
We finally named little kitty- Brenda thought of it- Black Bart- he was a stagecoach robber which fits his personality to a tee. Since Bogie came home, Black Bart clearly is the Alpha-Kitty around here. At first, Bogie was pretty irritated we’d replaced him. But now that Bogie has put some weight back on and the two kitties wrestle all day. Bogie has to have his food away from Blackie (Ben’s name for him), Bones eats Bart’s food. And Black Bart will only eat dog food. So there you have it.
Ben continues to make incredible progress- he’s truly amazing. He’s still physically a bit wobbly but cognitively he’s doing much better. His speech therapist who works mainly on his memory was shocked at how much better he scored on her tests since his seizures in August. His attention is improving which is a big part of getting his memory back. He’s often remembering stuff like what he did yesterday and what he had for breakfast- even that his friends came to visit last week so that’s really improving. He’s sleeping too. Yippee! Plus, I can reason with him- like now when he asks if he can drive, he actually understands when I explain and he even laughs and agrees. He continues to be laid-back and happy. He likes all 4 of his assistants and doesn’t even question what they are here for- he’s so used to having an ’assistant.’ Today he was looking up stuff on the Metzger Map and on the net already thinking about buying property. He thinks we are rich, so now rather than try to explain otherwise, I just go with it. I tell him he’s been a good provider and given me everything I’ve ever wanted and it’s the truth.