Re: [MSA Denial & communication

[Guest guest]

Bill,

No pity parties for me -- OR chat -- this afternoon! We're off to a

family gathering at a restaurant in Northampton, MA -- about a 2 hour

drive from here but also a 2 hour drive for Rob's sister (fron New

Hampshire and brother (from Albany, NY) so just about in the middle

for all.

Maybe I'll get a chance to start my family education project -- I

think it will be my New Year's resolution for 2002.

Now don't gossip about me on the chat this afternoon...

Caol & Rob

> > > > > Aida,

> > > > >

> > > > > I think you've mentioned something that many of us

caregivers

> > > > feel. It's

> > > > > odd, being depressed when someone tells you how well your

life

> > > > partner seems

> > > > > to be doing. I wonder if they don't know what I know or

can't

> > see

> > > > what I

> > > > > see. Of course there are many explanations. The easiest is

> > that

> > > > sometimes

> > > > > people are trying to be kind. More often though I think

that

> > > > people have a

> > > > > hard time seeing what I see. Like all of us, the patient

puts

> > on

> > > > the best,

> > > > > inside and out, for company and going out and especially for

> > > > doctors. It's

> > > > > also because I've lived so long with my wife I can see

subtle

> > > > changes long

> > > > > before anyone else. It's Peg's quick glance into a room

that

> > tells

> > > > me that

> > > > > sometimes now she no longer knows her way around our own

home.

> > > > Others don't

> > > > > catch this. It's also because I think our spouses feel they

> > can be

> > > > > themselves with us. It's part of having grown comfortable

> > together

> > > > over the

> > > > > years. The comfortableness may be good news for the

patient but

> > > > sometimes

> > > > > not so good news for the caregiver. On second thought, it

may

> > also

> > > > mean

> > > > > that we caregivers find it too easy to be grouchy with our

> > > > patients. We've

> > > > > grown comfortable with them too, and have become less

afraid to

> > > > place a

> > > > > burden on them.

> > > > >

> > > > > Of course there can be a bit of caregiver self pity in all

of

> > > > this. I

> > > > > sometimes wonder if others don't really know what a burden

this

> > all

> > > > is on

> > > > > me. Of course most do.

> > > > >

> > > > > I don't have a lot of solutions and would be interested in

what

> > > > others have

> > > > > to say. With medical personnel I step in and correct any

> > incorrect

> > > > > impressions. I will appeal to our written medical records,

> > > > imperfect as

> > > > > they may sometimes be. I am not afraid to let senior bosses

> > know

> > > > what the

> > > > > two of us face. However that's because I happen to trust

them

> > and

> > > > because

> > > > > I'm not afraid of being out of work. And they still need

what I

> > > > do. With

> > > > > acquaintances I do little to correct their impressions. We

all

> > > > need our

> > > > > dreams. With good friends I sometimes indicate that other,

less

> > > > favorable

> > > > > things are happening too, indicating that I trust them in a

way

> > > > that I don't

> > > > > trust everyone.

> > > > >

> > > > > It's not easy being a caregiver - or a patient. That's for

> > sure.

> > > > >

> > > > > Peg and Jim from Guam

> > > > >

> > > > > PS Based on our experience with stopping Florinef, I am

sure you

> > > > will be

> > > > > proved right about Bill's blood pressure dropping.

> > > > >

> > > > >

> > > > > > Date: Fri, 28 Dec 2001 15:31:04 -0800 (PST)

> > > > > > From: Aida Ruiz

> > > > > > Subject: Visit to neurologist

> > > > >

> > > > > > Hello: Bill saw his neurologist today for six months

> > > > > follow up. I am upset- to put it mildly. His bp was

> > > > > 140 standing and 140 sitting. The dr. said apparently

> > > > > the central autonomic system had responded, and

> > > > > suggested Bill stop taking florinef. Bill was all

> > > > > smiles. I reminded them that the last time he was off

> > > > > Florinef for three days, his bp fell to 60. When the

> > > > > dr. asked if he could bathe, dress, and eat by

> > > > > himself, Bill quickly responded " yes. " I was hoping to

> > > > > get some assistance at home. Without the dr referral,

> > > > > I can do very little. I just can't keep taking care of

> > > > > him alone. He told the doctor he could recall no

> > > > > falls. He didn't remember passing out in the hall in

> > > > > August. We did get a referral for physical therapy

> > > > > because I insisted.When I mentioned his legs

> > > > > 'freezing " so he couldn't take a step, Bill replied it

> > > > > was as a result of the angiogram he had 4 years ago.

> > > > > I guess he is still in denial- and I feel devastated.

> > > > > Sorry for the long message, but I don't want to be

> > > > > angry with Bill.

> > > > >

> > > > > > Aida and Bill

> > > > >

> > > > >

> > > > > ********************************

> > > > > *** Peg & Jim

> > > > > *** # 29 Cruz Heights

> > > > > *** Ipan-Talofofo, Guam 96930-4736

> > > > > *** USA

> > > > > ***

> > > > > *** Note: Guam is 15 hours ahead of

> > > > > *** Eastern Standard Time (EST).

> > > > > *** 14 ahead of EDT.

> > > > > ********************************

> > > >

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