This n that and the other.

January 4, 2001

Hi all;

Ann here from way up north where winter stays 9 months out of the

year!!! If it wasn't for the 'Oley and Lena' jokes, there would be no

reason to laugh. Thank God for the Norsky's...Ha ha.

Elaine wrote: How do you who stay home full-time cope/supplement? You must

be quite creative - and must spend considerable time sorting through much

red tape re. medical authorization/utilization.

Were just barely hanging on with the skin on our teeth. Not only financially

but emotionally too. As some of you know from my previous ranting and

ravings!! There just is no support or help when your loved one is in the

Nursing Home and they need much more care than the Home can provide. The

more I bring up, things mom needs or changes to make for her, the more they

remind me....'We are not a one on one private care facility'.......You all

know SDS patients need exercise, and water therapy is a great for

exercise...but the home only offered it to mother once every three weeks,

for a half hour, as a recreation activity. So I take Mother to water

therapy 3 times a week for 45 min to an hour. Massage is necessary to

relieve her stiffness(she is not on sinemet yet). Don't ever even expect a

massage to be given in a Nursing home. I give her a half hour to 45 min

massage after water therapy. They only give them a shampoo and bath once a

week. So when you go into a nursing home your suppose to stop caring about

hygiene and the ---- with how you look....Do you think that would affect a

person state of mind? It brakes mothers spirit, and she doesn't even want

to eat in the dining room when she doesn't look good. My sister goes in

every weekend and shampoos mothers hair and styles it...I do it on the days

we are at the YMCA. Even though I give her 3 days a week at water therapy,

tomorrow I take her to the doc in Fargo. Tuesday I fixed up a new bathing

suit, out of an old black dress for her. It really is, with all the paper

work and errands, like a full time job. I really do love doing it, don't get

me wrong. It's just that if it wasn't for my husband, who is more

understanding than most, allowing me to take care of mother and not be

earning an income. I do feel the stress of the finical pinch we are in.

Pete being a carpenter, it being winter, and last February he had prostrate

surgery, and still needs a hernia repair job. Well anyway the kids are grown

and gone, but even if your not spending much, you still have that same

amount that goes for bills and expenses. I might be able to squeeze a

couple of days to earn something. The truth is, I don't think I'm mentally

stable to work for anyone right now. Way to much on my plate at this time.

And It is soooo cold. If anyone has ideas of making legitimate money on the

computer let me know.

Oh crap have I been pissing and moaning again. I guess there is just no one

else to dump on......... Sometimes you just have to dump or you might get

emotionally constipated. 'that sorta funny if not true'

Ya it's cold here in Minnesota.......Mc told 'Oley that the fish were

really biting out in the lake. Oley decides he's gonna go do some fishen,

so after being gone all day Oley gets back and it is already dark. How was

the fishing Mc says to Oley. Oley replies, I can't tell ya, cuz by da

time, I got a hole, chopped out in da ice big enouf fer da boat, it vas to

dark to see ta fish.

ta da.... Ann-MN

----Original Message Follows----

Reply-To: shydrageregroups

To: <shydrageregroups>

Subject: Re: FirstGov.gov - Official website for searching the U.S.

Government

Date: Thu, 04 Jan 2001 13:00:32 -0800

Thanks so much, Barbara! I've printed out the page and will research the

individual entries when I have a few minutes.

It all brings up an interesting point, however. I assume we are not alone

in that we lost out primary income when Bob could no longer work. (Or are we

the only ones with this illness who are not independently wealthy?) The

loss of income coupled with increased medical expenses must be problematic

for many. We are o.k. at present - he is receiving Social Security, some

retirement from IBM Corporation and I am working full time. But, when/if I

need to stop working (which may not be far off), we will have a genuine

concern, what with mortgage payments, etc., etc.,

How do you who stay home full-time cope/supplement? You must be quite

creative - and must spend considerable time sorting through much red tape

re. medical authorization/utilization. I'm considering working from home -

but not sure what the compensation level would be. College degrees and much

business experience aren't necessarily virtues that one can utilize from

home (luckily, I'm quite proficient on the computer, so might be able to use

these skills.)

I've been curious about this for some time - you all sound like you're doing

just fine, and thought you could perhaps offer some tips (like the

information on Veteran's benefits, etc.) Thanks for any input - Elaine

>>> Barbara 01/04/01 11:39AM >>>

Elaine, here is a page for you to follow up on. Hope it helps. Ralph was

never in the military service so I do not know anything except what I

read.

Have a great day. It is 61' in Arlington, Texas right now. Plenty of

sunshine and the snow with ice has cleared away.

Barb

http://www.FirstGov.gov/fedsearch2/index.jsp?db=www & mt=all & mw=Veterans+benefits

January 5, 2001

have you tried your local Area on Aging agency for list of cheaper aides to

relieve you? I got one for $8.00 an hour here in Virginia for my Mom. it

was worth it to get a break once in awhile. YOU need a break it is obvious!

Take care. Marilyn in VA

January 5, 2001

Greetings Ann in MN!

You noted:

> ... have I been pissing and moaning again. I guess there is

> just no one else to dump on......... Sometimes you just have

> to dump or you might get emotionally constipated. 'that sorta

> funny if not true'

But is true and that's the advantage of this support group. People do

listen and understand. You are not alone. Sure we can't wave a magic wand

and make it all better. But we can listen and understand. Amazing how much

that helps.

Regards,

=jbf=

B. Fisher

January 5, 2001

Ann,

There are legitiment ways to make money with your computer. All

involve learning some software. Many people need to have ads, bills

or other mailings every month, you can do this with a word processor and

printer. Use standard labels and you can stuff envelopes , lables

and stamps at about 200 per hour. Word processing alone can earn

you some money with lawyers and accountants.

Lots of small businesses can use bookeepers who know spreadsheet software.

My daughter has one account that pays her $100 per month for 2-4 hours

a month of bookeeping.

I make $30-40 a month $1-10 at a time taking surveys and entering free

lotteries. ) Of course the bank does not like all those small

checks )

I do consulting and make drawings on the computer. What are you

hobbies, can you make them pay somehow? Somebody here on the list

makes and sells quilts, but that is probably time consuming.

Take care, Bill and Charlotte

--------------------------------------------------

maryann pedersen wrote:

Hi all;

Ann here from way up north where winter stays 9 months out of the

year!!! If it wasn't for the 'Oley and Lena' jokes, there would

be no

reason to laugh. Thank God for the Norsky's...Ha ha.

Elaine wrote: How do you who stay home full-time cope/supplement?

You must

be quite creative - and must spend considerable time sorting through

much

red tape re. medical authorization/utilization.

Were just barely hanging on with the skin on our teeth. Not only financially

but emotionally too. As some of you know from my previous ranting and

ravings!! There just is no support or help when your loved one

is in the

Nursing Home and they need much more care than the Home can provide.

The

more I bring up, things mom needs or changes to make for her, the more

they

remind me....'We are not a one on one private care facility'.......You

all

know SDS patients need exercise, and water therapy is a great for

exercise...but the home only offered it to mother once every three

weeks,

for a half hour, as a recreation activity. So I take Mother to

water

therapy 3 times a week for 45 min to an hour. Massage is necessary

to

relieve her stiffness(she is not on sinemet yet). Don't ever even expect

a

massage to be given in a Nursing home. I give her a half hour to 45

min

massage after water therapy. They only give them a shampoo and

bath once a

week. So when you go into a nursing home your suppose to stop caring

about

hygiene and the ---- with how you look....Do you think that would affect

a

person state of mind? It brakes mothers spirit, and she doesn't

even want

to eat in the dining room when she doesn't look good. My sister goes

in

every weekend and shampoos mothers hair and styles it...I do it on

the days

we are at the YMCA. Even though I give her 3 days a week at water therapy,

tomorrow I take her to the doc in Fargo. Tuesday I fixed up a new bathing

suit, out of an old black dress for her. It really is, with all the

paper

work and errands, like a full time job. I really do love doing it,

don't get

me wrong. It's just that if it wasn't for my husband, who is more

understanding than most, allowing me to take care of mother and not

be

earning an income. I do feel the stress of the finical pinch

we are in.

Pete being a carpenter, it being winter, and last February he had prostrate

surgery, and still needs a hernia repair job. Well anyway the kids

are grown

and gone, but even if your not spending much, you still have that same

amount that goes for bills and expenses. I might be able to squeeze

a

couple of days to earn something. The truth is, I don't think I'm mentally

stable to work for anyone right now. Way to much on my plate at this

time.

And It is soooo cold. If anyone has ideas of making legitimate

money on the

computer let me know.

Oh crap have I been pissing and moaning again. I guess there is just

no one

else to dump on......... Sometimes you just have to dump or you

might get

emotionally constipated. 'that sorta funny if not true'

Ya it's cold here in Minnesota.......Mc told 'Oley that the fish

were

really biting out in the lake. Oley decides he's gonna go do

some fishen,

so after being gone all day Oley gets back and it is already dark.

How was

the fishing Mc says to Oley. Oley replies, I can't tell ya, cuz

by da

time, I got a hole, chopped out in da ice big enouf fer da boat, it

vas to

dark to see ta fish.

ta da.... Ann-MN

----Original Message Follows----

Reply-To: shydrageregroups

To: <shydrageregroups>

Subject: Re: FirstGov.gov - Official website for searching the

U.S.

Government

Date: Thu, 04 Jan 2001 13:00:32 -0800

Thanks so much, Barbara! I've printed out the page and will research

the

individual entries when I have a few minutes.

It all brings up an interesting point, however. I assume we are

not alone

in that we lost out primary income when Bob could no longer work. (Or

are we

the only ones with this illness who are not independently wealthy?)

The

loss of income coupled with increased medical expenses must be problematic

for many. We are o.k. at present - he is receiving Social Security,

some

retirement from IBM Corporation and I am working full time.

But, when/if I

need to stop working (which may not be far off), we will have a genuine

concern, what with mortgage payments, etc., etc.,

How do you who stay home full-time cope/supplement? You must be

quite

creative - and must spend considerable time sorting through much red

tape

re. medical authorization/utilization. I'm considering working

from home -

but not sure what the compensation level would be. College degrees

and much

business experience aren't necessarily virtues that one can utilize

from

home (luckily, I'm quite proficient on the computer, so might be able

to use

these skills.)

I've been curious about this for some time - you all sound like you're

doing

just fine, and thought you could perhaps offer some tips (like the

information on Veteran's benefits, etc.) Thanks for any input - Elaine

>>> Barbara 01/04/01 11:39AM >>>

Elaine, here is a page for you to follow up on. Hope it helps. Ralph

was

never in the military service so I do not know anything except what

I

read.

Have a great day. It is 61' in Arlington, Texas right now. Plenty of

sunshine and the snow with ice has cleared away.

Barb

http://www.FirstGov.gov/fedsearch2/index.jsp?db=www & mt=all & mw=Veterans+benefits

January 5, 2001

I live in Springfield. They have a list they can send you. You talk to the

people on list and interview and hire who you want. Many will negociate

price. Will try to find the old list if you need a phone number. Marilyn

Vineyard

January 5, 2001

Marilyn,

Yes, weve checked with The Aging group, Public Health, Social Services, etc and

they all say we are entitled to help. But even though we pay the taxes, you

can't find anyone in our area of Fairfax county. If I lived in the real rich

part of the county or in Falls Church, there would be no problem. What part of

Virginia do you live in? The last aide we had coming in was $16.50 per hour.

Mc's pays more than $8 per hour and has benefits here.

Take care, Bill and Charlotte

-----------------------------------------------------

mjvineyard@... wrote:

> have you tried your local Area on Aging agency for list of cheaper aides to

> relieve you? I got one for $8.00 an hour here in Virginia for my Mom. it

> was worth it to get a break once in awhile. YOU need a break it is obvious!

> Take care. Marilyn in VA

>

January 5, 2001

Marilyn,

I have that list and none will come to Herndon. I have friends in ndale

that have no problems. There were three that lived in Herndon or Reston and

they were full up. Did you know we have a support group in the Washington Metro

Area?

Take care, Bill and Charlotte

---------------------------------------------------------------

mjvineyard@... wrote:

> I live in Springfield. They have a list they can send you. You talk to the

> people on list and interview and hire who you want. Many will negociate

> price. Will try to find the old list if you need a phone number. Marilyn

> Vineyard

>

January 5, 2001

Marilyn,

I have that list and none will come to Herndon. I have friends in ndale

that have no problems. There were three that lived in Herndon or Reston and

they were full up. Did you know we have a support group in the Washington Metro

Area?

Take care, Bill and Charlotte

---------------------------------------------------------------

mjvineyard@... wrote:

> I live in Springfield. They have a list they can send you. You talk to the

> people on list and interview and hire who you want. Many will negociate

> price. Will try to find the old list if you need a phone number. Marilyn

> Vineyard

>

January 5, 2001

Marilyn,

I have that list and none will come to Herndon. I have friends in ndale

that have no problems. There were three that lived in Herndon or Reston and

they were full up. Did you know we have a support group in the Washington Metro

Area?

Take care, Bill and Charlotte

---------------------------------------------------------------

mjvineyard@... wrote:

> I live in Springfield. They have a list they can send you. You talk to the

> people on list and interview and hire who you want. Many will negociate

> price. Will try to find the old list if you need a phone number. Marilyn

> Vineyard

>

January 5, 2001

,

Sometimes I moan, and then when I see what I wrote,(in a response back to

me) I have to laugh, or at least let out a nerves chuckle. Did I really

write that??? You might be catching on that I'm kind of a odd duck at time

especially my since of humor.

Today was a good day even though I did my best to screw it up. I took Mother

to Fargo to her Internist appointment. I'm 16 miles from the Nursing Home

and Fargo is on the other side yet, around 60 miles further. Well on our way

after waiting for meds, and records, I realized I had left my purse with all

of mothers information and my drivers license at home on my counter top.

Don't have enough time to go back, so I stop at the bank and get $50 cash,

just in case. Now I'm on the freeway and time is tight. Oh my, the

directions to the new clinic is in Mothers room. Ok I read them, what did

they say, I think I know approximately where it could be. I get into Fargo

and pull into a gas station. Super! only 5 blocks down and 2 blocks to the

left. Great we're only one minute late. It turned out to be a great day. The

Internist was real informative and admitted he had only seen one other

person with Shy-Drager. He talked with us for over 2 hours! I think we can

work with this guy. Then we headed over to the hospital and got the EKG and

Chest X-ray, eat hospital food, and traveled on home. The roads were good,

no ice and the sun was out. We got back to town filled up the gas tank and

drove through the car wash. My Maroon car look kind of tan/gray before the

wash. When mom and I were in her room at the nursing home, there was still

time before supper, so I took her to the bathroom and gave her a oil back

and neck massage. We have a friend at the home who has emphysema, his lungs

are shot. I stayed with him while mother eat supper. I told him to have me

called in if he takes a turn for the worse. I want to be with him when he

dies, he said he would like that. When mother finished her meal. I took her

to see him and she kissed his hand and thanked him for being so kindhearted

to her. When I left mother tonight she was praying the rosary for her

friend.

That was about 5 hours ago, I just called and he is breathing a little

easier then before, so he might pull through this. I feel this day has been

a very full but rewarding day.

What will next week bring on the......

" The Old and the Dutiful " <- like that!!!!!! ha ha, ha ha.

Ann->

----Original Message Follows----

Reply-To: shydrageregroups

To: <shydrageregroups>

Subject: Re: This n that and the other.

Date: Fri, 5 Jan 2001 11:12:16 -0500

Greetings Ann in MN!

You noted:

> ... have I been pissing and moaning again. I guess there is

> just no one else to dump on......... Sometimes you just have

> to dump or you might get emotionally constipated. 'that sort of

> funny if not true'

But is true and that's the advantage of this support group. People do

listen and understand. You are not alone. Sure we can't wave a magic wand

and make it all better. But we can listen and understand. Amazing how much

that helps.

Regards,

=jbf=

B. Fisher

January 5, 2001