Dancing on the Edge

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.