Hello, my friends. I feel very worried because Doug is taking

[EFerrari]

his meds as prescribed and working his program and yet, he only has about 5 good hours every day. I'm not sure I'm not watching deteriorating cognitive skills.

My hearts hurts for him because he's so full of life and love and it's like, there's a WALL there that he has to climb every day, all day.

His performances are terrific. I don't know how he does it, I really don't.

(sigh)

Well, I guess here's to appreciating every clear, good minute. To knowing what is important. To grabbing it with both hands.

/spellin'

[DemExpat]

1. It's like what most of us do each day, Beth, IMO.....

to all different kinds of degrees, and fluctuations.

I'm sorry that it hurts you so to see it in your love.

Here's to taking it moment by moment, and enjoying what we have when its all there, even in pieces.

:grouphug: :hug: :hug:

DemEx

[EFerrari]

2. You must be right.

I guess I feel pretty helpless much of the time, to make things better. And that's hard. I'm not very good at letting go of things.

But, here's to what we can do. Thank you.

:hug:
:grouphug:

[EFerrari]

3. He's getting worse and no one sees it yet.

His therapist is in denial. The family can't look.

I'm sort of tired and just trying hard to stay out of the drama.

Oh boy.

Sometimes I wish I had a better sense of humor. These benchmarks really don't mean anything. It's just that what is usual becomes less usual, and some other pattern takes over.

I don't know anything about the kind of deterioration I'm seeing. If it's just temporary or what.

Times like these, I appreciate what we all handle. So much.

[shrike]

4. You may have to get into the therapist's face

One thing about the medical community, as wonderful as they are, they can also be extremely pig-headed.

Judging from your past posts, you ARE good at getting into their faces. You might just feel a little too worn out to do it this time.

How does Doug see himself? Does he see his cognitive abilities fading?

Psychotropic drugs are such powerful things, the wrong mix and the wrong dosage can really mess you up. I remember the stupid SOB I used to go to. He decided that if 20 mg of Prozac was good, 60 mg would be better. I ended up having paranoid delusions and nearly put myself in the hospital.

[EFerrari]

5. That's awful and sadly, par for the course.

Doug is decompensating twice a week again. And when the painfulness of it gets too bad, he turns it on me because I'm handy. He doesn't seem aware of what is going on. He's alone in the Zone. :(

[shrike]

6. You two seem to be survivors

And I'm sure you'll get through this, too.

Is there anyone else around, a friend who sees the deterioration and can go to bat WITH you. It can be easier to make the medical establishment pay attention when two or more advocates are in the room.

[EFerrari]

7. I don't know what they can really do, that's the thing.

He has awful reactions to all anti psychotic drugs. His doc has basically tried ALL of them. I guess maybe going back to the last thing that worked might be worth trying. It'll be two weeks, in the best case, before he's okay.

Thanks, shrike, for listening to my whining.

:hug:

[politicat]

8. All I can suggest is videotape.

Perhaps if you can tape what you see, especially if you can document the cognitive deterioration, that will get the therapists' attention.

We can be as guilty as anyone of being too confident in our abilities to see what needs to be seen.

Not offering medical advice here, but is Doug aware of the deterioration? Does he see things he used to be able to handle and now can't?

[EFerrari]

10. Nope. And he is planning a one-man show in the Summer.

I can just feel my hair falling out worrying that one of those nights, he will refuse to go on.

I've understood over time that my positive contribution really does make a difference. But, I've got to be careful to really be in touch with what is going on. With the shifting abilities. With his team listening to him too literally. With a bunch of stuff.

You know, what has to be done is me + support making this living situation workable. Period. I get tired and I need to figure out a way not to get so tired that my interactions with Doug are negative.

We can do better than this.

[shrike]

12. Is he a comedian or a musician?

Isn't amazing that creative gifts are so often found in those who have quirks in the brain? They seem to go hand in hand.

[mopinko]

9. poor sweetie

:grouphug:
wish i could give you that hug in person.
don't know what to tell you, except- have faith in your observations. docs can be stupid. they really can. you have to fight to get good care. but, as i yelled at a doctor last summer, when i had all that crap going on- at the end of the day, the sad truth is, that the person who gets help for their loved ones is the one that nags the most doctors, makes the most phone calls, and even pisses off the most people. that is just what it can take.
take care of yourself, as best you can.
:grouphug:

[EFerrari]

11. Lol! Isn't that the truth.

I am the Wicked Witch of the West. All my make up is some shade of green.

:rofl:

But, in the end, it's just me trying to help Doug have the best life he can have. Last week, he performed at a Berkeley benefit for their food bank. And he was great. He raised bucks for them and make some hardworking people laugh. :)

Nothing prepared me for doing this job. Here's to doing whacha can.

:toast: