Tuesday, August 08, 2006

Brain Dump

So - this past weekend we went up to Seattle to help (though I'm not convinced we were of any help whatsoever what with the kids and all) settle my parents into an adult family home. As some of you may remember from earlier postings, my parents had been living in an assisted living situation for the past 2.5 years. My mom has a neuro-muscular disease called Primary Lateral Sclerosis which is akin to, and often mistaken for or mis-diagnosed as amyotrophic lateral sclerosis or ALS (Lou Gehrig's disease). Conversely, I'd assume, the mis-diagnosis could also go the other way. But whatever the disease actually is (the doctor's say PLS, my sister seems convinced it is actually ALS (my great aunt and grandfather on my moms side had ALS though genetic testing on my mom says she does not have genetic ALS. More on that later.) it is not something you would wish on someone.

My mom's care needs have gone beyond assisted living so the next step was to move her to the adult family home (which is basically nursing home level care in a family type setting. The number of adults needing care in the homes vary based on the home itself. This home is set up for three care-needing residence.). This sucks on many levels. The first being the obvious: Mom is getting worse. The second reason this sucks is my dad doesn't need this level of care (he had a stroke 13 plus years ago which left him impaired but he is still a fine candidate for assisted living) however my parents don't' want to be split up. So - dad has moved into the house as a tenant (as opposed to a care-needing resident).

So - as hard as that all is to take in and deal with, I find that I am really bogged down by the weight of "what if this happens to me?" or.....the much worse and a hundred times more terrifying "What if this is something genetic that I have passed onto my beautiful children??" It scares me. Both things scare me.

My mom turns 68 years old this month. When I am the age where her symptoms started being noticeable (though not diagnosed. That wasn't done until 2.5 years ago) my son will only be 17 and my daughter will be 14. That is waaaaaaaaaaay too young to saddle them with something this enormous. And even if it weren't to strike me until I am 65.5, my kids would still only be 28 and 25. Still too damn young. I have four siblings. Does that better the odds or worsen them? I don't know. I wouldn't want any of them to have something like this either. Like I said, I wouldn't wish this on anyone.

And what about my kids? What about it happening to them? I can't even handle the thought.

Genetic testing was done. Mom does not have the genetic markers for ALS. But isn't it odd that my mom's father and aunt both had ALS and now my mom has either PLS or ALS? What are the chances? The average person has a 10% chance of developing ALS in their lifetime. That odds that two people in the same family (and a third with another similar disease) must be astronomical.

I feel awful for my mom (though I personally think she could have slowed the progression somewhat by actively fighting instead of basically rolling over and giving in) but on a whole different level, I am scared for myself and terrified for my kids.

Yeah yeah - we could all get hit by a bus tomorrow or develop some other disease....but that isn't the point. This is a "known" scenario....and it scares me.

The home, though, is a really nice place with really nice people. That part is good. Really good. The house has a great view of Puget Sound and from it you can hear both the trains and the ferry boats. Both of those things make my dad very happy. Like I said - it's a nice place. I just wish it wasn't someplace my parents needed to be.

4 comments:

Caroline said...

I am sorry you are having to go through this. I can't imagine how hard this is. Not only dealing with the emotions you have regarding your Mom, but also the emotions you are feeling wondering if this is something you will have to deal with. I worked for several years in a nursing home right after I got my masters. It was the hardest job I have ever had. We had several residents that were there because their spouse needed to be there. I know I would do whatever I had to to always be with Laura. My heart goes out to you right now. Hang in there.

Kristen said...

Someone you could talk to about this is Soup. Her mom had a disease (can't remember what it was) that was genetic and she agonized for years over getting tested, even going so far as doing IVF to not take the chance of her possibly having it and possibly passing it on to her kiddos. Anyway, you could probably find her email on l-moms and talk to her about this.
In the meantime, I am sending big hugs!

Laura said...

I'm so sorry that you're going through all this now. Are there any support groups that you could contact? Hugs!!!!!!!!!!

Casey said...

Thanks for all your kind words, everyone.

I don't feel a need to get tested since my mom was tested and she does *not* have the genetic form of ALS. It's the random-ness of it that scares me and the fact that maybe, just maybe, they are wrong and don't know what they should be looking for in the genetic stuff.

Again, thanks for all the good thoughts. I appreciate them.