Today I, along with my dad and brother, accompanied my mom to the Virginia Mason A.L.S. clinic. The idea behind the clinic is that you go to one place and sit, and all the A.L.S. specialists in various disciplines come to you. There was a nurse, the A.L.S.A. patient care coordinator, two respiratory therapists, a speech therapist, a nutritionist, two occupational/physical therapists and a student P.T., a psychiatrist, a doctor specializing in A.L.S., and a neurologist who specializes in A.L.S.
In theory it’s awesome. In practice there’s one huge drawback. Because there are so many people to see, they don’t share notes until the end of the day. Which means they all ask the same questions, since the disciplines with regard to A.L.S. overlap. Here’s an example:
My mom can’t swallow. That obviously impacts her eating, and she has a feeding tube that allows her to get her caloric needs met. But after that, her mouth is still producing saliva which she can’t get rid of. She can choke to death or drown in her own fluids. There are basically two solutions: medication or a suction device. Medication dries the saliva production, but it also dries your eyes. My mom doesn’t want to do this because of previous eye disease that could return if her eyes dry out which they have a tendency to do as a result of that disease. She uses eye drops. The suction device she had but returned after three or four weeks because it is not portable. The doctors have basically said, “put it by your favorite chair and then don’t move.” So her solution has been to carry a handkerchief and dawb the saliva away. It’s portable and doesn’t dry her eyes.
Anyway, about 5 of the folks we met with wanted to put her on medication to stop the saliva. So she’d tell them she didn’t want to do that. The doctors (term used generically, they aren’t all doctors) wouldn’t just say okay, moving on to the next item
. There’s good reason for that. They want to make sure she’s not rejecting medication out of hand simply because she has some sort of fear of medication or other irrational belief that prevents her from enjoying the remaining time she has. But since there isn’t a common chart, and even if there was there wouldn’t be time to share the information between each specialist, we have to go through the whole explanation from the previous paragraph every time.
That’s really tough for someone who can’t talk, and who has to type up the reasons and responses on a speech device. What I can explain in about 30 seconds will take her 4 or 5 minutes. Now, actually a few times I did step in and explain this, after asking mom if I could do the explanation. But it still takes a lot out of her, and there’s always a slightly differently worded well, could you consider it this way
thing from the doctors that my mom needs to answer.
By and large, I’m really impressed with the A.L.S. clinic. Having access to people who know the latest and greatest with regard to A.L.S. treatment is wonderful, even if there’s not a lot of practical results. And it sure beats having to make two trips or worse nine trips to each kind of specialist. But it’s tough on my mom. A.L.S. often causes exaggerated emotional responses, particular laughing and crying, clinically. Add that on top of dealing with a fatal illness that requires major life changes. She’s fatigued and tired and emotionally raw. That’s the base. Then 9 visits one after the other with many of them very pressure filled. It’s been a rough day for my mom.
Watching that is pretty rough for me too. Participating in it takes a huge emotional toll. My mom being unwilling to let me help more is hard. I have some skills as a former manager that could make a lot of her daily life less stressful, without her losing any independence. It would mean living nearer to her most days. She has told me not to do this though. She doesn’t want me to distance myself from my friends, and she wants me in Seattle to take care of my grandparents. Plus, there are other family things tied in to this that make it even more troubling for me.
I really need to see a counselor.
I also need an emotional refuge, and I don’t have it. I’ve got some pieces of it, but not everything. Mentoring is my lifeline. Jason gets my mind off my troubles. And a small group of friends has gone above and beyond to prop me up. But what I don’t have is a tight-knit group of friends who yell out “Norm!” as I go to a familiar place every day. No June Cleaver waiting to hang up my coat either. I know, having such things isn’t actually that common. T.V. isn’t reality. But goddamn it sure is attractive, and I wish I had it right now.
Fuck. I really am a wreck tonight.
