After having accompanied my mom on a number of visits to health care professionals, I'm really un-enamored of the field generally. Most have had a pretty poor bedside manner, despite good intentions. I'm including all operating issues except for the actual medical care in that category. Poor one-on-one communication. Poor follow through. Etc. And it seems like both my mom and I are more knowledgeable on the issues than a number of the ones we've seen.
The ones with the worst manner were the folks at the ALS clinic at Virginia Mason, who are also the most knowledgeable. The visits there were stressful for many reasons. There really aren't any ALS specialists in any field up here.
I do want to publicly note a couple of really helpful folks up here. Dr. Dana Petersen at Lynden Family Medicine, although a general practitioner not knowledgeable about ALS, has done a bang up job getting at least to the level of information my mom knows, and he always takes the extra time to walk us through the pros and cons of the alternatives.
And Tim (can't remember his last name) at Cascade Prosthetics in Ferndale has been wonderful, patient, and knowledgeable. He's doing the brace that my mom wears to keep her head up. She can't make her neck muscles do that anymore. He doesn't know ALS specifically, but has about a billion ideas to try. I had done some research online into possible braces. I wasn't too hopeful on any of them, and neither was he. But I didn't want to leave any stone unturned. He brought out samples of those just to ease my mind. The brace my mom is using is made of plastic, but it is too pliable to hold mom's head up very far. So he had a technician at their shop add aluminum bracing to it, and it seems to be working so far.
Anyway, that's a bit of a digression. The point being that all the others have left me a little disappointed at least. So I really really want to meet the hospice folks, because they will be the most important professionals in the final six months. I'm hoping not to be disappointed but scared I will.
Normally, hospice steps in during the last six months. That may not be right now. It may be soon though. At this point it's too early to tell. Mom cannot eat, drink, or talk. She can't hold her head up. Her right hand is nearly useless though her right arm still has some function. She's got some deterioration in the left arm and hand, but that is at least a few months behind the right in progression. That's actually a bit on the encouraging sign to me. If it doesn't strike both limbs at the same time, it means consecutive, which means more time in my head. She hasn't really lost any use of her legs. What is most worrisome to me is she is having more trouble breathing (particularly exhaling). That's what kills most ALS patients. Whether her breathing problems are the start of the ALS progression in that area, or something else, we don't know.
I have mixed feelings on all this. I really don't want her to die. Duh. But given that it's going to happen as a result of ALS, at some point I want it to go quick. There's some serious suckage involved with ALS. ALS is not a quick thing, even in the fastest cases. This is not like when Matt died, which was instantaneous. ALS is relatively, though not completely, painless. That's about the only good part of it. You go progressively more paralyzed. Just as soon as you get things figured out at one stage, you have to redo everything. I don't remember if I posted this, but my sister is pregnant. I'm hoping that mom lives long enough to be able to hold the kiddo. Due date is in September. Not sure when it's realistic for him/her to travel to visit. I know that would mean a ton to her to hold him. I just hope it doesn't suck too much along the way. My mom can, already has, handled a lot.
As for me, you can tell by reading this that I have some really serious
grief issuesgoing on. I'm depressed. I'm losing myself in books and light banter with the folks at the Black Drop, an awesome Bellingham coffee shop. All my friends have been awesome. I can't thank you all enough.
I really wish I had a girl to curl up with who would just tell me everything is going to be okay. There's been the opportunity, but it was just too hard for me to open up and be vulnerable with women I don't have with whom I don't have that existing relationship. (No, I'm not gonna make the grammar in that sentence make more sense.)
I've also kind of foregone much contact with all but the closest of friends when I'm in Seattle. That's been hard, but it's harder to deal with constantly repeating what's going on with my mom. I don't mind telling people, though if I did it might make this all easier. But I hate the repetition. I hate when people argue with me or give me advice I've already rejected. Jason says I should just say
doing fineand move on cause people really don't want to know, don't know how to talk, and really just want that answer anyway. It's not really my nature though to make okay when I'm not. I may try it his way yet.
My close friends know me well enough to handle me pretty well, so I've been sticking to them. Though even then sometimes things aren't all rosey. I want to yell at them
Do I have to explain exactly what I need? Can't you just know?Which would be bad. There'd be hard feelings. Plus, part of the reason I want people to know exactly what I need is that I really don't know myself. Really though, these folks have been great. I'm just fucked up.
Things I need to do; can't say I'll actually do them though:
* Try out social activities here.
* Find a counselor here.
* Get some exercise.
So yeah, that's the dump. Doing about as well as can be expected given the situation and the shit I'm not doing that I should.
I love you Joe and Sara.
I love you Deirdre.
I love you Erin.
I love you Kim.
I love you Jason.
I love you mom.
As Stan Lee wrote, 'nuff said. (Hah!)