Re: Visit to Neurologist and Denial

[Guest guest]

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)

>

> 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.

********************************

[Guest guest]

Jim,

You stated beautifully what I have been feeling about being a

caregiver. Rob is slipping a bit these days, but all our friends

keep saying he looks great. His siblings, for whom he has always

been the " glue " keeping the communication going, still depend on him,

not realizing how difficult it is for him to pull together family

gatheringss. The children continue to be self-absorbed and the

younger two are somewhat insentitive to his feelings. Meanwhile, I

must admit that I panic a little when he forgets things, and that in

turn makes be grouchy and I snap and him then feel badly. I dont'

have a solution either, but it's nice to know I'm not alone.

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

> > 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.

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

[Guest guest]

Dear Jim: Over the holidays everyone mentioned how good Bob looked. At the

last Support Group Meeting in Lexington MA it was mentioned how everyone

always says how well the SDS patient looks. I think people are trying to be

kind and want to say something nice hoping to cheer you and the patient up.

Bob is almost completely wheelchair bound - can self feed almost like a

toddler - I don't look - he struggles but wants to do it himself - I only

help feed him puddings and icecream or jello, he does the rest - so you see

he is quite handicapped. We had lots of visitors and they all said how well

he is doing and how much better he seems. When I look at Bob in repose he

does look good - his color is good - he seems a little heavier - though I

think some is bloat - and when people come by he struggles to be courteous

and sociable and smiles a lot as his voice has gotten quite low and soft.

One of our daughters had breast cancer (she is doing well now) but she looked

so poorly I was always bringing by Ensure and healthy treats to build her up.

Physically she looked sick. She looks great and healthy now but other than

when Bob has an infection friends and some family are always remarking how

well he looks. It's probably a handicap to look so well that people can't

see how really debilitated and changed the patient is. The patient wants

them also to see him as he once was - he also speaks as if he will be better

soon. When I'm bringing the groceries in from the car Bob says I will help

you with those - a man who can't get up alone and then can't walk unassisted

and then just a few steps. He also will not tell the Dr. anything bad - I

have to - I write a list and stick with it. Once I was going to make an

appointment to speak myself with the Dr. but I didn't have the time and the

next visit I let the Dr. know what my concerns were. When visitors or

friends see me try to move Bob or put him in the car or take him to the

bathroom - I can tell then they realize how handicapped he is - but they

still try to say something nice. I think they think they are encouraging

you. I didn't mean to go on so long but it is discouraging when everyone says

how good the patient looks - how well they are doing - when the real Bob has

disappeared behind the SDS - but sometimes for a few minutes I get a glimpse

of him and take heart from that. You are right - it is not easy being a

caregiver - or a patient. The truth is very few people really understand or

know how it really is. That is why this group is so good and the local

Support Group is excellent. People understand a little and when I read the

emails I always learn something every day. Pat and Bob

from Framingham MA

[Guest guest]

Hi All: - , Jim & Peg, Aida and Bill - and all. Last night when I went

upstairs I saw on the piano some pics of Bob that were taken last summer at a

large Purcell family get together - brothers, sisters, cousins,

grandchildren, - from all over the country. I am guilty of the same thing as

everyone else - when Bob's sister first brought them I said how well Bob

looked - in the pics he looks better than his 2 brothers - one 4 years older

and one 10 years younger and in good health. I remember that day as it was

hard getting to Cape Cod (Bob's brothers house) even though I had the help of

my daughters and sons-in-laws- and grandchildren. Bob sat in his wheelchair

in the shade under a tree - I had all his equipment - including the commode

and a private place in one of the garages to use it so we wouldn't have to

handle the steps. I made sure he had something cold to drink - somebody was

always sitting with him and he had soft food - plenty of it. I noticed his

brothers and sisters were always running around chasing a ball or racing with

the young group so maybe in the pics they look exhausted. Bob had his Navy

veteran hat on to shade him and he looked good. I put the picture out

because he looks good in it. So you see I said " Wow, doesn't Bob look good

in this picture " and I complemented his sister on taking such a good picture

of him and his brothers. Last summer when we left the Purcell group - some

of them saw me, with help, getting him into the car and lifting his legs to

get them in. When I hugged them goodbye I could tell how emotional and

sympathetic they were to us but like me - they all said how great Bob looks

in that picture. I guess we clutch at straws and try for any good news - Bob

looks good - but inside he is falling apart and slowly disappearing as he

really was before Shy-Drager. Pat from Framingham MA

[Guest guest]

Pat:

You really said it all and said it very well re denial - which is NOT a

river in Egypt.

I really can empathize with your feelings, although at a lessor level as

Terry is in earlier stages than Bob. Our daughters and sons in law were

here for Christmas. They could clearly see the decline as she has

recently become largely walker dependent. However, any attempts to

address her real situation directly elicit comments of " shss, Terry

might here you. " They do try to address her glaring needs - e.g.

she got a basket for her walker for a Christmas gift - but not our

emotional needs.

Indeed, denial by the family leaves we care givers with a definite

feeling of being alone and isolated. I find this feeling is tough to

deal with - especially at Christmas.

And, I really echo your closing comments:

The truth is very few people

really understand or

know how it really is. That is why this group is so good and the

local

Support Group is excellent. People understand a little and when I

read the

emails I always learn something every day.

except we have no local support group here in Charlottesville. In my

case, I do have available the resources of the Co Director of the

clinical unit that handles Terry's case in the Department of

Neurology at the University of Virginia. [ Terry's neurologist is the

other Co Director. ] The former is a psychologist and offers

tremendous insight into the vagaries of MSA due to her unique

interdisciplinary experience. I do feel really fortunate with

this very valuable and effective resource available.

We on this list all need to stay close. It is a precious resource to be

preserved and shared by all.

I really admire your insight. God speed in your efforts and

understanding.

Message: 5

Date: Sun, 30 Dec 2001 00:07:57 EST

From: MPurcellPat@...

Subject: Re: Re: Visit to Neurologist and Denial

Dear Jim: Over the holidays everyone mentioned how good Bob looked. At

the

last Support Group Meeting in Lexington MA it was mentioned how everyone

always says how well the SDS patient looks. I think people are trying to

be

kind and want to say something nice hoping to cheer you and the patient

up.

Bob is almost completely wheelchair bound - can self feed almost like a

toddler - I don't look - he struggles but wants to do it himself - I

only

help feed him puddings and icecream or jello, he does the rest - so you

see

he is quite handicapped. We had lots of visitors and they all said how

well

he is doing and how much better he seems. When I look at Bob in repose

he

does look good - his color is good - he seems a little heavier - though I

think some is bloat - and when people come by he struggles to be

courteous

and sociable and smiles a lot as his voice has gotten quite low and soft.

One of our daughters had breast cancer (she is doing well now) but she

looked

so poorly I was always bringing by Ensure and healthy treats to build her

up.

Physically she looked sick. She looks great and healthy now but other

than

when Bob has an infection friends and some family are always remarking

how

well he looks. It's probably a handicap to look so well that people

can't

see how really debilitated and changed the patient is. The patient wants

them also to see him as he once was - he also speaks as if he will be

better

soon. When I'm bringing the groceries in from the car Bob says I will

help

you with those - a man who can't get up alone and then can't walk

unassisted

and then just a few steps. He also will not tell the Dr. anything bad -

I

have to - I write a list and stick with it. Once I was going to make an

appointment to speak myself with the Dr. but I didn't have the time and

the

next visit I let the Dr. know what my concerns were. When visitors or

friends see me try to move Bob or put him in the car or take him to the

bathroom - I can tell then they realize how handicapped he is - but they

still try to say something nice. I think they think they are encouraging

you. I didn't mean to go on so long but it is discouraging when everyone

says

how good the patient looks - how well they are doing - when the real Bob

has

disappeared behind the SDS - but sometimes for a few minutes I get a

glimpse

of him and take heart from that. You are right - it is not easy being a

caregiver - or a patient. The truth is very few people really

understand or

know how it really is. That is why this group is so good and the local

Support Group is excellent. People understand a little and when I read

the

emails I always learn something every

day.

Pat and Bob

from Framingham MA

Sennewald Charlottesville,

Virginia