Wednesday, April 09, 2008

on a hamster wheel

Several sites going, several reports due, one big project (over)due, bookkeeping to finish so the taxes can be done, billing to get out, files to be sent, logins to be tested. Another big project to start, a database filter to figure out and entry form to design. Spring cleaning barely started (but at least it’s started), seeds to start, yard to clean up if the weather gives us a break this weekend. Car needs to go in for a checkup (that damned “check engine” light is on ... ) Brunch with a friend, dinner with another friend, calls and email to family. Dog to be dosed daily and back to the oncologist on Monday (she’s still doing really well and the bill is up to more than $3K). Diet is going well (more than 20 pounds so far!), exercising needs to begin. Lots and lots of little tasks to take care of. Three books half read, two crossword puzzles nearly finished, ten rolls of film that need developing (at the photo developers less than a mile from here). Trip to U-Mass Amherst soon to take Kate out to dinner. If she has time for us. Watching the cat stare at something only cats can see. Taking care not to watch the news too much so I can avoid the rage at the damage and the stupidity. Relief that a loved one is not as sick as we thought he might be. Too much clutter—where to begin? Need more sleep; lately I’ve been falling asleep at my desk but very productive when I wake up (prompted by guilt at napping, maybe? Whatever works.) Right now, laundry to finish.

And daily I fight the cats for my fake suede and cat-furry office chair (click to enlarge):

catnaps, Twitch and Slink, April 7, 2008, copyright Lee Fleming Thompson

We just have too much stuff—I have a strong urge to declutter, to pare things back to that the only things we keep are our books and artwork and collections of things that mean something to us. There are too many pieces of paper taking up space here. I don’t want minimalism in my home, I just want less stuff. After I file our taxes, I am going to get rid of paperwork that I really don’t need to keep “just in case” dating before 2005. Oh, and obsolete manuals for software that we stopped using two operating systems ago. And clothes I never wear.

It’s just starting that’s the hard part.

Sometimes I wish I could just turn the thinking, thinking, thinking off. I was halfway into this article: A Disease That Allowed Torrents of Creativity before I realized I was in this weird sort of denial that I was reading an article about frontotemporal dementia, the disease that is stealing my mother, slowly, but unremittingly. I read the words “frontotemporal dementia” and saw the abbreviation FTD and was annoyed because I didn’t know what they were talking about. But I did. It was so strange.

Several months after the definitive diagnosis, it is still so painful to me that my stomach clenches and my eyes tear up. Grief at the loss that is and loss to come. Rage at the asshole in the White House for hampering stem cell research. Worry about my father, who has to deal with this every single day. And having those times when I’m just pissed off at the universe. I still can’t watch reruns of “The King of Queens,” or anything with those actors, because my mother’s insistence on watching reruns of this show a couple of years ago was when I knew, without a doubt, that something was very wrong.

Okay, the hamster wheel has stopped long enough ... I don’t want to think about it any more today. So I’ll go hang my t-shirts to dry and then go to bed. Yeah, that’s the ticket ...

posted by lee on 04/09/08 at 03:54 AM
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Wednesday, April 23, 2008

frontotemporal dementia resources (& ginger too)

Yesterday, I received the book “What If It’s Not Alzheimer’s?: A Caregiver’s Guide to Dementia” and started reading it. It’s not a quick read, but from what I’ve read so far, it gives a careful, detailed presentation of what FTD is and is not, what happens in the brain, the different types and symptoms of the different types. I’m only a couple of chapters in (I just started the chapter on genetics) and I already understand things better. It’s not a pretty picture and it’s really distressing to read the details, but I much, much prefer to know the whole truth about everything than to bury my head in the sand and have hope not based in reality. I sent a copy of this book to Dad and he should get it in a few days.

Another resource is a private support group: FTD Support Forum. To join this, you register and post a message to the moderators to tell them why you have an interest in joining and within a pretty short period of time, they approve you (if your reason is legit). You will see me there as “wordsilk” if you join.

The Association for Frontotemporal Dementias has a lot of resources, though it’s a confusing site to navigate.

Though this information is for medical practitioners and not specific to just FTD, I found it very useful: Dementia: Update for the Practitioner. It’s not as dense as some medical articles I’ve tried to read.

Frontotemporal Dementia Caregiver Support Center is very useful. It’s a great place to start.

The Pick’s Disease Support Group is a British organization, but has lots of useful information. In particular, reading Pick’s from the inside out by Dr. Bob Fay really helpful—it’s his own story as an FTD patient.

Neurology Now, while covering a broad range of neurological problems, makes its articles available online. I think you can subscribe to a print edition of it for free.

What I still need to find out is what kind of resources are available in Michigan, such is there a way to get a referral to a social worker in my parents’ neck of the woods who can help them get what they need in terms of in-home or respite care or any other things available. That’s my next task, unless someone else in the family can find this information faster than I can.

Last week, the onco vet told us that since her white blood cell count was down so much after each treatment, she was worried that the lymphoma had gotten into Ginger’s bone marrow or than Ginger had a genetic predisposition to drug resistance and would need to be tested for this if the WBC count was low again on Monday. Which really depressed me, worrying about this (on top of worrying about Mom and Dad and my brother). Fortunately, the WBC count was perfect on Monday. So the chemo is working and she’s officially in remission. She has one more weekly treatment next Monday, then every other week for six treatments, then it’s every three weeks until she’s discharged. I feel much better now. She gained three pounds, though, so now we have to cut back a bit on the food again. It won’t do her much good to be cancer-free but unable to waddle up the stairs!

And my brother got a diagnosis for a problem he is having that is not the fatal, incurable disease they thought he had, but one that is treatable—I am immensely relieved by that.

posted by lee on 04/23/08 at 04:14 PM
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