Colleen[5]: Getting some answers perhaps

[mdlbear]

Spent almost the entire day with Colleen -- it wasn't my original plan, but I went in around 10am intending to get some training on the IV pump. Which didn't happen until she got hooked at about 1:30. Unlike what we'd been told yesterday, she's now on a 16-hour cycle (which is what she was on last time, and what we'd been told Friday). I got angry at a few people.

The "patient care coordinator" for the weekend is a large guy named Joe, with an insincere, lopsided grin pasted onto his face and apparently very little in his head. He's the one who had the gall to say "this usually runs smoothly" after royally screwing things up to the point where Colleen will have to come home Tuesday and not tomorrow, due to massive failure to coordinate who's doing what, when.

I did, however, get a good lesson in flushing the PICC line and changing the cap -- it's different from the last one. The lessons came from an RN from the oncology department, where they have experience sending people home with IV pumps. We also established in the process that the pump she had was damaged, and got a new one ordered.

I also made certain that somebody would be there tonight at 8:30 to train me in setup. That took a certain amount of being firm with people, but I got a call a little while ago and it'll happen. (She was supposed to train me last night, too, but neither Colleen nor I ever heard from her.)

Colleen became distraught at a couple of points, mainly when not getting a firm schedule for her surgery, and when finding out that she wouldn't be going home until Tuesday. She fell apart yesterday on hearing that she would be on a 20-hour schedule (which turned out not to be the case, but the staff were very insistent that they were right and what we'd been told by the doctor on Friday was wrong).

We've been jerked around a lot, obviously. It's also clear that this disease is a long-term, life-wrecking Big Fat Fscking Nuisance -- it might not be as life-threatening as cancer, but it's certainly life-changing and I think the BFFN tag is justified.

I've also asked to see a psychiatrist tomorrow. Not for Colleen -- she won't have anything to do with them, after some exceedingly bad experiences in childhood. For me, to learn how to cope with this whole "being human" thing, and in particular how to calm Colleen down to the point where she can listen and think rationally again, and how to restructure our mental lives to cope with sudden disappointments. I'm not convinced psychiatry is the answer -- in fact, I'm reasonably convinced it isn't. But it's what they came up with at the hospital.

We're also going to talk with her surgeon and GI doctor, and a dietician (she's been told that she can have liquids, including tea and supplements like Ensure -- loud cheers). She has a visit to our personal physician scheduled for Friday (rescheduled from Tuesday; I'd been hoping to just steal her appointment for myself, but...).

Comments

[pocketnaomi.livejournal.com]

While psychiatry in the traditional sense may not be the answer, it sounds like coaching may be. You need to learn more skills in handling both your own stress and feelings of being overwhelmed and Colleen's. These are teachable, and a good psychiatrist can teach them -- usually quickly enough to give you a fair idea of what you're doing within one or two visits. That might just be useful for you.

[mdlbear]

That may be right. OTOH my last experience with something that called itself coaching was Landmark. You're probably right about the one or two visits, if I can find the right person on the first try.

What I'm hoping for is a lead on courses and support groups for caregivers and long-term illness management.

[acelightning.livejournal.com]

A psychiatrist is likely to just write you a prescription for anti-depressant and anti-anxiety meds. A psychologist will teach you ways of coping with the stress you're under, and ways of helping Colleen cope with the stress she's under.

I can't give you any leads on courses, support groups, etc., in your specific area. But my grown son is a clinical psychologist, and I could ask him for some buzzwords and catch-phrases that might steer you in the right direction. Would you like me to do that?

[mdlbear]

Yes, please. Those pointers are basically what I'm looking for from whoever comes by tomorrow this morning.

I'd ask my niece, who's a social worker, but she's in the Peace Corps and off plying her trade in Madagascar at the moment.

[acelightning.livejournal.com]

Okay... here's his reply:

Psychologists or counselors are much more appropriate for dealing with "normal" stresses (as opposed to stress disorders like panic attacks,PTSD, etc.), which are typically called "adjustment disorders" (manifesting difficulties in adjusting to a stressful situation). Clinical info on them can be found in summary here:
http://www.behavenet.com/capsules/disorders/adjdis.htm (http://www.behavenet.com/capsules/disorders/adjdis.htm)
I would recommend against most psychotropic drugs that might be prescribed by a psychiatrist, with the possible exception of some short term anti-anxiety meds, especially if you are having sleeping dificulties.

(Note: don't be alarmed by the language used on that webpage; it all has very specific clinical meanings.) If you have more detailed questions, I'll relay them.

[mdlbear]

Thanks. Very useful, if only for reference.

I don't think I fit the criteria yet; I may just need simple stress management plus something about communication skills that I still don't have a clinical name for.

[acelightning.livejournal.com]

Well, then, tell the psychologist exactly that. Emphasize that you want to learn techniques of effective emotional communication in order to help Colleen deal with her stress. If the psychologist they refer you to doesn't know what you're talking about (or, Goddess help us, if it's a psychiatrist), the American Psychology Association (http://www.apa.org/) has a "find a psychologist (http://locator.apa.org/)" feature. Be persistent until you find someone you're comfortable with.

[mdlbear]

*nod* I started the discussion yesterday morning with this post, and will use an expanded version of it for my first session with whatever Kaiser comes up with for me.

[acelightning.livejournal.com]

It certainly sounds as if you're on the right track. But if you'd like me to ask my son for more information, just let me know. I think he likes helping people develop a positive attitude towards his profession ;-)

[lisa-marli.livejournal.com]

Hi - Welcome to what Big Harold and I have been living with for the last 3 years.
We keep hoping the worst is over...
Anypath, at this point you can plan on Colleen taking no trips until this thing is settled. When will it be settled? Who Knows? The doctors on that point are not being stoopid, they really don't know. Healing bodies is not an exact science, and each body truly does its own thing. All they can do is keep patching until the patches stick.
So Local Cons Only, with revocable distance planning (Hotel reservations with no deposits, fully refundable air line tickets) a possibility. But remind Colleen not to get her hopes up on traveling anywhere for a while.
Once they Really Get This Thing Mended (figure it will take 6 months including healing time), then she can go back to life as she knows it.
But some of the Crone's People say it can take quite a while for this kind of damage to be repaired. But then after wards, They do go traveling again. So it is possible. IF the stoopid intestines heal.
The Big IF, which the Doctors Really don't have any clue about. If you push them for an answer, they will give you one, but then when it goes wrong it will break your heart... Again.
Damn t-shirt has holes in it.

[septemberlilac.livejournal.com]

Yeah, they tried that the-caretaker-needs-a-psychiatrist bit with me, too. And then, when she wouldn't accept that I had no interest in seeing one, I invited the so-called social worker to get the hell out of my house. She was still arguing when I closed the door in her face. Ah, memories.

What's happening to you and Colleen makes me extremely angry because it's the same kind of crap I went through, where the right hand doesn't know what the left hand is doing, departments don't communicate with each other, they jerk you around constantly and you have to keep re-fighting battles that you shouldn't have had to fight in the first place. It's beyond frustrating, and I wish I had something more helpful to offer than <<>>.

[mdlbear]

Opposite problem in my case: I damned well need something, but I have no idea what or who or how to find it. Our one experience with a social worker was an absolute wipe-out, but other ones seem to have done good for other members of my family. YMMV all over the map, apparently.

[chipuni.livejournal.com]

Colleen is lucky to have someone watching out so carefully for her.

I hope that everything works out.

[septemberlilac.livejournal.com]

Ack! My hugs to you seem to have gotten lost in the posting! Trust me, there were hugs for you and Colleen there.

[mdlbear]

*hugs back*

[brmj.livejournal.com]

I'm (very) cautiously hopeful that the "long-term, life-wrecking Big Fat Fscking Nuisance" description turns out to be less earned than you fear.

I don't have anything more helpful to offer than good thoughts, but I am sending those in abundance.

[mdlbear]

Thanks. I hope so, but from all appearances Crohn's is a chronic condition that can be managed, but not cured. So it'll keep flaring up, and we'll have to keep dealing with it. At least we were better prepared this time, and it'll be even easier next time. But it won't be predictable.

[firecat]

I can see where talking to someone who is professionally trained to listen and give sensible advice makes sense, but psychiatrists in general know more about dispensing medicine than about those skills. They are MDs. Clinical psychologists and licensed clinical social workers (LCSW) are professionally trained to listen and give advice where appropriate.

However, I think this is a situation where doing something now is better than trying to optimize.

Also I wonder if it makes any sense to have some kind of care manager. I don't know too much about that, except that they exist. I also don't know if it's possible to work with Kaiser through a care manager.

[hugs]

[mdlbear]

Joe is some kind of care manager; I wouldn't have him on a bet.

I'm pretty sure there are people out there who can teach me the skills I need; I just have no idea what they're called. I'm hoping the Kaiser shrink can point me at them.

[firecat]

I meant someone who advocates just for you and Colleen, not someone who coordinates for Kaiser.

[mdlbear]

Can't afford one.

The idea of a social worker is superficially appealing -- it's what I originally asked for -- but my one experience with a Kaiser-based social worker was essentially content-free.

:' (

[carmiel.livejournal.com]

I am so sad to hear about the crap you two have to go through...again.
If I had the money, I'd send another bear to maybe give her a smile, but would you pretty please send me the snail mail address where she is? I might have a stamp around here somewhere...

Re: :' (

[mdlbear]

*hug* Thanks. She'll be coming home day after tomorrow, so it's probably best to send a card to the house if you want to send one. Or call her. All contact information here.

[artbeco.livejournal.com]

*hugs* to both of you. I'm so sorry you're getting jerked around, and I can so feel for what you're both going through. I'm really glad that Colleen has you there acting as her advocate. I shudder to think how she'd be getting treated if you weren't there fighting for her...
Sending healing thoughts, and big hugs.

[mdlbear]

*hugs* Thanks.

I sometimes worry about what "ordinary" people do, and what kind of care they get.

[dsmoen.livejournal.com]

Hugs to both of you. I'm sorry I haven't had the energy to get over to visit her, but the garage absolutely needed reorganizing and there was no energy left after that.

When I mourned the loss of my last protein shake, I was told about Mediclear, which is not the least bit tasty, but it's gluten free and nutritious, and it is actually calming for my intestines (though that doesn't mean anything for hers).

If you happen to get some and she doesn't like it, I'll buy it off you, because I will eventually use it. I buy it from here. It's specifically designed for people with food allergies, though it's not as complete a solution as something like Ensure. I usually make it with unsweetened soy milk rather than water.

[mdlbear]

Actually, calming to the intestines would be a good thing for her, too. Thanks.

[rowanf.livejournal.com]

Aw man. I'm so sorry to hear this. My energy and prayers continue for you both.

And that virtual hug icon is full of win!

[mdlbear]

Thanks! The virtual hug icon comes from ohiblather (Debbie Ohi); I seem to recall it was a gift to her LJ friends a couple of years back.