Re: Re: [MSA Denial & communication

[Guest guest]

Carol,

Isn't it a %#$@% that we have to pile that responsibility on top of

caregiving tasks )

Yes, I agree that the steps and plateaus of MSA make acceptance much

more difficult for eceryone (and especially those who don't see the patient

often). No pity parties allowed for caregivers - join the Chat this

afternoon and we will have a celebration )

Celebrate LIFE! While you got it!

Take care, Bill

=======================================================

cblanger49 wrote:

Bill,

I think you make a good point. We told the kids and Rob's brother

and sister about his illness and the prognosis when he was diagnosed

almost 4 years ago. He has continued to do fairly well, and I

think

the family has gotten lulled into thinking that maybe it's not really

that bad. He does still get around well, and puts his best foot

forward when he sees freinds and family, but his illness is

progressing and those who do not see him every day don't (or don't

want to) see it. So, maybe it's time for me to have another talk

with family members and let them know where things are.

There are still the well meaning friends who make stupid comments.

We recently saw some friends with whom we've traveled to Aruba in the

past. When the husband made a comment about perhaps going again in

the spring, Rob said, "Well, I don't know, I don't think I can handle

that kind of heat now." The reply was "Oh, we'll just fix you

up

with a hat and an extra bottle of water and you'll be fine."

Well

meaning, but I was ready to smack him!

So, I'm going to take your advice and start right now by forwarding

some literature from the various web sites we've identified on this

list to the family. Thanks for the reminder that I have to do

my

part to educate others.

Happy New Year,

Carol & 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 <aidaoruiz@y...>

> > > > 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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> >

> >