et. al.(re: Jim... and caregivers)

[Guest guest]

Thanks for writing in, (and

Bobby/ Anne and everyone else, too!).

There are so many times when this group

feels like it’s more for the PSCer, and not for the caregiver, so I hope

I’m not treading on ground I will regret, by opening this thread.

But since this is, according to the founder, a support group for PSCers *and*

their caregivers/family/loved ones, why, this just might (hopefully) be a thread

of conversation of benefit to some, the whole “how can I do justice to my

job as my loved one’s appointed caregiver, when (s)he is doing things

against her/his best interest?” shebang.

I’m of the passionate belief (as are

all Jim’s doctors) that there’s a mind/body connection between job stress

(obviously exacerbated with lack of vacations) & the onset of, in Jim’s

case, chronic ulcerative colitis (and who’s to say about the PSC thing,

but the hepatologist’s first-ever questions to Jim after the PSC dx was

about job stress). Jim’s onset of UC came after working grueling

hours over multiple shifts. The family business, btw, is manufacturing

printed circuit boards, and there’s an ebb & flow of lean years and

plenty that coincide with the economy. Back in 1984, the economy (and our

family business) just sucked. The business was in operation 24/6, with 3

shifts a day (it still is, and thank God we are still in business when so many American

PCB manufacturers have closed due to, uh, “overseas” competition).

“Family” vacations were few

and far between… only 3 of any duration when the children were tiny, 2

when the kids were teens, and the last time all 5 of us vacationed together was

upon ’s college graduation, when Jim was a fairly sick guy, in 2000.

At the time, and with the hep’s urging (“don’t let life pass

you by; go make memories with your family!”), I told Jim it was NOT

negotiable, & we all went to Europe on the

cheap-cheap, with the girls’ handbell choir. Jim was a bit

reluctant at the time, but now he insists he had an awesome, wonderful,

glorious time. (Ain’t that just the way?)

Right after Jim/’s transplant,

Jim claimed to want to get a motorhome and travel the good ole USA.

Sounded delicious to me! That post-tx enthusiasm (fueled by the post-tx

steroid roller coaster ride of emotions) and joy at his having been reborn was

eventually replaced, however, by his comfy old work ethic. By his own

definition, if you asked him, he would first & foremost say he’s a “good

provider.” My dear brother once tried to tell him “Jim,

nobody ever laid on their death bed kicking themselves with the thought ‘gosh,

I wish I had worked even harder!’”

So – segue back to before the onset

of his UC – Jim took it upon himself to be at work by 7am, come home at

7:30pm, grab a bite for dinner, fall asleep in front of the television, wake

up, go to bed, and get up at 2am (yeah, you heard me, 2am) to go in and

supervise that shift. Not being Hercules (he’s is Superman by his

own definition, just not Hercules by mine!), he would only last until 4 in the

afternoon… come home, drop on the bed, sleep ‘til dinnertime, get

up, eat, go back to bed and get up at 2am all over again. That schedule

would adjust per his level of exhaustion (and stress, the dreaded “S”

word his lips would never utter until his hepatologist finally succeeded in

getting him to understand eventual transplantation would be the reality some 17

years later!)

If, for whatever reasons, our loved ones

don’t listen to us (and our collective voice of reason, which is based

upon sound medical advice), then what do we do? What is our

recourse? What is the option when a patient refuses to hear the doctor

plead? What are you going to do, , as is recuperating at home

and probably overdoing it? Is this something the three of you (you,

, and his doctor) can discuss – and hopefully settle – prior

to his January 26th colectomy? In our case, I spoke to the

attending (dermatology) nurse who was there when the Moh’s expert clipped

Jim’s artery… she says Jim will eventually be fine from this bump

in the road to recovery, but he’s made his recovery harder and much more

uncomfortable, overall (well, duh!) by not heeding their instructions.

I’ve marked my calendar, and I’ll

sure be sending nothing but good thoughts your ( & ’s) way on the

26th of this month, ! And thanks again for your prayers

for Jim’s healing. I’ll be sure and do likewise and add

(and YOU) to my prayer list.

Apologies for excessive post length, but

hey, I sure do feel much better now.

With warm thoughts & sincere love &

appreciation to you and this great group,

Maureen (wife of her much-beloved Jim, the

self-described “bad patient”)

From:

[mailto: ] On Behalf Of Furry

Sent: Friday, January 13, 2006

7:43 AM

To: ; Subject: Re: update on Jim's

Moh's (Maureen)

Maureen,

I FEEL FOR

YOU - my husband will not take time off for ANYTHING. The morning he had

his ERCP he went to work and put in a few hours. He drives me nuts.

The Dr has been begging him to take a short-term disability to get himself

better. He pushes himself SO hard and he needs relax and take it

easy. I beg and beg and it doesn't work. He's having surgery the

26th of this month, a colectomy. The Dr. said it will take 4 - 6 weeks

for his recovery and he will especially have to use that time and be careful of

lifting and pushing heavy items. Of course he thinks he'll be back to

work in a week and guess what - that's all his job is - lifting.

needs prayers but so do I!!

Hang in there

and prayers heading Jim's way, hoping that everything heals.....

, OH

Husband -

: Crohns, 88 & PSC, 6/05