Re: Introduction and Coping as a new care giver

[Guest guest]

Hello Marty,

My name is Bill Pilgrim (Australia). It would appear to me that what-ever you do, you must do it after VERY CAREFUL consideration of the relationship between your wife and yourself, your individual natures, your financial situation and health otherwise than this problem. It would seem that the best thing you could do would be to finish work ASAP and start enjoying life together as much as you can and being there for one another.

This is all very well so long as you and your wife could tolerate the extra contact etc, whether the loss of income would bother you and whether your wife would resent losing more of her independence, by having you "in the way all the time". It may not be that any of these things present any problems, but it will be very hard to reverse the thoughts that will flood in after you have resigned and left your work to stay beside her.

You will need total honesty and a long and frank discussion. I guess you knew all of this anyhow, but it only someone who knows you and your wife as you two do yourselves who can give the correct answers.

Will you be able to do something to occupy yourselves to help her forget what is happening to her. She will not truely forget it, but if she can do things that she loves doing, with you and you enjoy it also, it seems that it may be a good part of your lives together. It may also be that she would prefer to continue, albeit in a motorised wheel chair, with the work she has been doing for so long. Think hard before you place yourself in the position where you give up what you have, unless you are sure you will not blame your wife for your loss. You need to be careful about forcing her to give that up before she is ready and resenting being placed it that situation.

I believe that a frank and open discussion is the onlly way this will be resolved.

I guess I haven't told you anything really, but you will probably find that by using the group as a sounding board for ideas, and feeling free to express your feelings, as bad or as good as they may get, that you will be able to throw off some of the frustrations that can make your life miserable. Do not be afraid to debate the problem and call a spade a spade, as right now, if you can both stand it openness and honesty between you both may solve the problem

BillP

-- Introduction and Coping as a new care giver

Hello:Let me introduce myself: I am Marty Siegel.I have posted once or twice on this list but wish to ask for some general info to help me in my current problems.My wife has some sort of sporadic ataxia, perhaps OPCA and maybe MSA but she has not been clearly told this.Until about 8 months ago her problems while bothersome did not seriously affect our life style. My own personal medical problems seemed more worrisome (advanced prostate cancer) but in truth our life styles were not seriously affected.Well that was then. Now her condition which was deteriorating over the past years (she has had some problem for seven years) has passed a threshold. IN fact she can hardly walk. We bought a four wheeled walker for he last December and it has become a necessity and in fact may no longer be enough.I find that I am being thrust into the role of a caretaker when I am not worrying about my own problems. I see that there are a number of you who have gotten into this role which I find very painful. It hurts me to see her struggle to do simple things like getting into or out of a car or even sit down on a dining room chair. I feel helpless in knowing that there is nothing I can do and that her problems are only getting worse.We are both about 60 and are trying to reevaluate our lives to some extent. She works (or has been working) as a college professor at a community college. She had to take a leave of absence after fracturing her shoulder this past March due to a fall, but is hoping to go back.Its not clear she will be able to however. I am also employed and wonder if I should take early retirement so we can be together.IN a sense I am not sure what I am asking any of you but I am truly pained by my (our ) situation and find it hard to get people to speak to about it. Most of our friends do not know what to say or are appalled at what has happened. I do use other support groups/people for my cancer problems but her situation is quite something else for me. She is not one to reach out to others and I feel really burdened at times by all that is happening now.I am wondering how others have dealt with such difficulties at least as care givers or perhaps more.Thanks for listening,Marty SiegelIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Marty,

You are describing MSA to many of us as far as your wife's condition. It sounds

much the same as my wife Charlotte, in the 1995-1996 time frame. I wish I could

give you more assistance, but she had to retire on SSDI and became dependent on

a wheelchair due to balance problems at that time. She was able to work at a

computer, but not cook or even bathe herself shortly afterward. Sounds to me as

if you need to start planning on assistance for her care soon. Realistically,

at first she will need help with bathing and cooking as that is dangerous for

her. Housework you can not handle will also be a problem. Hopefully you have

some sort of long term care insurance which will cover home care.

Hiring someone to come in and help the two of you out would be cheapest, but is

hard on finding the right person. Your local Agency on Aging or social

services/public health agency is a good place to start in the USA. At least

they can tell you what programs are available in your area. If you give us the

general geographic area, someone may know of programs also.

Take care, Bill Werre

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

Marty Siegel wrote:

> Hello:

> Let me introduce myself: I am Marty Siegel.

> I have posted once or twice on this list but wish to ask for some general

> info to help me in my current problems.

>

> My wife has some sort of sporadic ataxia, perhaps OPCA and maybe MSA but

> she has not been clearly told this.

>

> Until about 8 months ago her problems while bothersome did not seriously

> affect our life style. My own personal medical problems seemed more

> worrisome (advanced prostate cancer) but in truth our life styles were not

> seriously affected.

> Well that was then. Now her condition which was deteriorating over the past

> years (she has had some problem for seven years) has passed a threshold. IN

> fact she can hardly walk. We bought a four wheeled walker for he last

> December and it has become a necessity and in fact may no longer be enough.

> I find that I am being thrust into the role of a caretaker when I am not

> worrying about my own problems. I see that there are a number of you who

> have gotten into this role which I find very painful. It hurts me to see

> her struggle to do simple things like getting into or out of a car or even

> sit down on a dining room chair. I feel helpless in knowing that there is

> nothing I can do and that her problems are only getting worse.

>

> We are both about 60 and are trying to reevaluate our lives to some extent.

> She works (or has been working) as a college professor at a community

> college. She had to take a leave of absence after fracturing her shoulder

> this past March due to a fall, but is hoping to go back.Its not clear she

> will be able to however. I am also employed and wonder if I should take

> early retirement so we can be together.

>

> IN a sense I am not sure what I am asking any of you but I am truly pained

> by my (our ) situation and find it hard to get people to speak to about it.

> Most of our friends do not know what to say or are appalled at what has

> happened. I do use other support groups/people for my cancer problems but

> her situation is quite something else for me. She is not one to reach out

> to others and I feel really burdened at times by all that is happening now.

>

> I am wondering how others have dealt with such difficulties at least as

> care givers or perhaps more.

>

> Thanks for listening,

>

> Marty Siegel

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

Dear Marty,

My heart goes out to both you and your wife. Most people on this web site are dealing with the same problems you are dealing with. I was dealing with breast cancer just as Sheldon was diagnosed with MSA Shy Drager. It is not easy to see someone you have loved for so many years struggle with this disease. You said your wife is not one to reach out. Neither is Sheldon. He left work on a disability and would not tell anyone why. He has come to terms with this now and will talk about what is happening more openly. He has told his friends where he worked why he left as he did. I also quit work in September to be able to spend more time with him. It was a decision that I am glad that I made. I consider whatever time that we have together as a precious gift. We have to make the very best of the time that we have and thank God for the opportunity that we have to be together before the disease takes over our lives. I pray that God will give you the strength to deal with the problems ahead of you and the time to spend loving time with your wife.

Love and gentle hugs,

Verlene

[Guest guest]

Dear Marty,

My heart goes out to both you and your wife. Most people on this web site are dealing with the same problems you are dealing with. I was dealing with breast cancer just as Sheldon was diagnosed with MSA Shy Drager. It is not easy to see someone you have loved for so many years struggle with this disease. You said your wife is not one to reach out. Neither is Sheldon. He left work on a disability and would not tell anyone why. He has come to terms with this now and will talk about what is happening more openly. He has told his friends where he worked why he left as he did. I also quit work in September to be able to spend more time with him. It was a decision that I am glad that I made. I consider whatever time that we have together as a precious gift. We have to make the very best of the time that we have and thank God for the opportunity that we have to be together before the disease takes over our lives. I pray that God will give you the strength to deal with the problems ahead of you and the time to spend loving time with your wife.

Love and gentle hugs,

Verlene

[Guest guest]

Marty,

I thought Bill Pilgrims words were very considered. To his I add my

own 2 cents worth. Value each moment and live it fully, but do not

suffocate the individual in each of you. Your wife may need to stay

working, although perhaps at a different pace - there is dignity in being

valued. You will no doubt need your own time too.

There is always the danger in becoming a martyr, which never serves

anyone well. Before packing your life in and changing it, perhaps

you could alter it (that way neither of you has to feel as though the

other is being deprived). It is easy to make suffering the centre of

life, it's a trap, don't do it.

It may be hard to watch her struggle, but it is no less difficult for

her to see your pain (humour is my favourite strategy). I'd

certainly take love and laughter over pity and sacrifice any day.

Maybe your should try dating your wife or taking mini vacations.

Perhaps work-sharing is a concept you could both live with.

A little wisdom: Imagine the worst it can possibly be, and then delight

that it is not yet so.

Take care, both of you.

At Saturday 6/8/02 07:57 PM, you wrote:

Hello:

Let me introduce myself: I am Marty Siegel.

I have posted once or twice on this list but wish to ask for some general

info to help me in my current problems.

My wife has some sort of sporadic ataxia, perhaps OPCA and maybe MSA but

she has not been clearly told this.

Until about 8 months ago her problems while bothersome did not seriously

affect our life style. My own personal medical problems seemed more

worrisome (advanced prostate cancer) but in truth our life styles were

not

seriously affected.

Well that was then. Now her condition which was deteriorating over the

past

years (she has had some problem for seven years) has passed a threshold.

IN

fact she can hardly walk. We bought a four wheeled walker for he last

December and it has become a necessity and in fact may no longer be

enough.

I find that I am being thrust into the role of a caretaker when I am not

worrying about my own problems. I see that there are a number of you who

have gotten into this role which I find very painful. It hurts me to see

her struggle to do simple things like getting into or out of a car or

even

sit down on a dining room chair. I feel helpless in knowing that

there is

nothing I can do and that her problems are only getting worse.

We are both about 60 and are trying to reevaluate our lives to some

extent.

She works (or has been working) as a college professor at a community

college. She had to take a leave of absence after fracturing her shoulder

this past March due to a fall, but is hoping to go back.Its not clear she

will be able to however. I am also employed and wonder if I should

take

early retirement so we can be together.

IN a sense I am not sure what I am asking any of you but I am truly

pained

by my (our ) situation and find it hard to get people to speak to about

it.

Most of our friends do not know what to say or are appalled at what has

happened. I do use other support groups/people for my cancer problems but

her situation is quite something else for me. She is not one to reach out

to others and I feel really burdened at times by all that is happening

now.

I am wondering how others have dealt with such difficulties at least as

care givers or perhaps more.

Thanks for listening,

Marty Siegel

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Dear Marty:

I am sure you will be getting mail from many of the people on this

list, as it is a very caring, helpful bunch. My husband passed away a little

over a year ago after struggling with these symptoms for many years. I too

was still working full-time when he retired at age 60. It was not early

retirement for him, but the first age at which he could retire with full

pension, and because of his health, he did it. He continued to take

occasional assignments for a few years before he was no longer able to do

even that. I gave up full-time employment shortly after he retired because I

realized that I wanted to be able to spend more time with him while I could.

I did continue to have a part-time practice until about 2 years before his

death. I did not have cancer as you do, but I did have quite severe Arthritis

which limited my ability to care for Ken and did result in two knee

replacements about two years before his death.

Our solution to this was to hire full-time help that was here at least

12 hours a day. As a result of this, we were able to go on short trips

together and to enjoy many outings with our friends. Without help, we would

have been housebound for over five years, but with help, Ken was housebound

only for the last six months of his life during which time, Hospice workers

came to our home on a regular basis as did friends. In other words, because

we had help in our home, we could lead a pretty normal life, and we could

enjoy being with each other. I am well aware that this is not an option for

everyone. It was unbelievably expensive and cut into our savings quite a lot,

but I am forever grateful that we were able to do it, and that we had the

last part of his life together.

I shall be thinking about the two of you and praying that you find a

good answer for you. This is a very difficult time for both of you, but it

can also be a very loving and rewarding one.

Love, Barbara

[Guest guest]

Marty,

You have been given alot of good advise. There are a lot of people

who will be here for you and your wife. There is nothing I can add to

it. I will keep you both in my prayers. The wisdom that Aletta gave

you I especially liked and have wrote it down for myself to remember

also. A good neurologist who specializes in movement disorders would

be your best choice in doctors if possible.

God bless,

Belinda

A little wisdom: Imagine the worst it can possibly be, and then

delight that it is not yet so.

Thanks Aletta, I needed that!

> >Hello:

> >Let me introduce myself: I am Marty Siegel.

> >I have posted once or twice on this list but wish to ask for some

general

> >info to help me in my current problems.

> >

> >My wife has some sort of sporadic ataxia, perhaps OPCA and maybe

MSA but

> >she has not been clearly told this.

> >

> >Until about 8 months ago her problems while bothersome did not

seriously

> >affect our life style. My own personal medical problems seemed more

> >worrisome (advanced prostate cancer) but in truth our life styles

were not

> >seriously affected.

> >Well that was then. Now her condition which was deteriorating over

the past

> >years (she has had some problem for seven years) has passed a

threshold. IN

> >fact she can hardly walk. We bought a four wheeled walker for he

last

> >December and it has become a necessity and in fact may no longer

be enough.

> >I find that I am being thrust into the role of a caretaker when I

am not

> >worrying about my own problems. I see that there are a number of

you who

> >have gotten into this role which I find very painful. It hurts me

to see

> >her struggle to do simple things like getting into or out of a car

or even

> >sit down on a dining room chair. I feel helpless in knowing that

there is

> >nothing I can do and that her problems are only getting worse.

> >

> >We are both about 60 and are trying to reevaluate our lives to

some extent.

> >She works (or has been working) as a college professor at a

community

> >college. She had to take a leave of absence after fracturing her

shoulder

> >this past March due to a fall, but is hoping to go back.Its not

clear she

> >will be able to however. I am also employed and wonder if I

should take

> >early retirement so we can be together.

> >

> >IN a sense I am not sure what I am asking any of you but I am

truly pained

> >by my (our ) situation and find it hard to get people to speak to

about it.

> >Most of our friends do not know what to say or are appalled at

what has

> >happened. I do use other support groups/people for my cancer

problems but

> >her situation is quite something else for me. She is not one to

reach out

> >to others and I feel really burdened at times by all that is

happening now.

> >

> >I am wondering how others have dealt with such difficulties at

least as

> >care givers or perhaps more.

> >

> >Thanks for listening,

> >

> >Marty Siegel

> >

> >

> >

> >If you do not wish to belong to shydrager, you may

> >unsubscribe by sending a blank email to

> >

> >shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

[Guest guest]

Marty,

The questions you pose are difficult ones and are ones

that only you and your wife can answer. I can tell

you what we did, and perhaps give you some

suggestions.

My husband Rob was diagnosed 4 years ago with MSA (at

age 52). HE has all the classic symptoms and was

fortunate to get a diagnosis quickly without the

problems that many have had of long drawn out testing

and strings of docs. His movement has never been the

biggest issue, so in terms of getting around he is

still pretty good. His symptoms are primarily

autonomic, with some parkinsonism and a little ataxia

thrown in (for good measure -- HA)

As you know the prognosis for MSA is not great -- 10

years on average from diagnosis. Rob was not working

when he was diagnosed, so his decision was easy --

he's " retired " -- actually officially disabled, and

collecting disability income. It took me about 2

years to firmly decide that I would leave the

workforce and stay home with Rob. I had an executive

position, and it was very difficult for me to give up

all that I had worked to achieve, but it seemed like

it was time. Since Rob no longer drives and has

trouble remembering to take his meds, it has been good

for me to be home. He would feel very isolated and

lonely otherwise too.

The last thing is a support group for your wife. I

don't know where you live, but do try to find a group,

or even just one other person, for her to talk to.

The most touching thing that was said by a patient at

the National Support Group meeting in Boston was " You

know, I've never seen another person with my problem

before. " The isolation this disease causes is

terrible, and seeing and talking to another person

with similar problems is important.

I hope that helps,

Carol & Rob

Lexington, MA

--- Marty Siegel porpoise@...> wrote:

> Hello:

> Let me introduce myself: I am Marty Siegel.

> I have posted once or twice on this list but wish to

> ask for some general

> info to help me in my current problems.

>

> My wife has some sort of sporadic ataxia, perhaps

> OPCA and maybe MSA but

> she has not been clearly told this.

>

> Until about 8 months ago her problems while

> bothersome did not seriously

> affect our life style. My own personal medical

> problems seemed more

> worrisome (advanced prostate cancer) but in truth

> our life styles were not

> seriously affected.

> Well that was then. Now her condition which was

> deteriorating over the past

> years (she has had some problem for seven years) has

> passed a threshold. IN

> fact she can hardly walk. We bought a four wheeled

> walker for he last

> December and it has become a necessity and in fact

> may no longer be enough.

> I find that I am being thrust into the role of a

> caretaker when I am not

> worrying about my own problems. I see that there are

> a number of you who

> have gotten into this role which I find very

> painful. It hurts me to see

> her struggle to do simple things like getting into

> or out of a car or even

> sit down on a dining room chair. I feel helpless in

> knowing that there is

> nothing I can do and that her problems are only

> getting worse.

>

> We are both about 60 and are trying to reevaluate

> our lives to some extent.

> She works (or has been working) as a college

> professor at a community

> college. She had to take a leave of absence after

> fracturing her shoulder

> this past March due to a fall, but is hoping to go

> back.Its not clear she

> will be able to however. I am also employed and

> wonder if I should take

> early retirement so we can be together.

>

> IN a sense I am not sure what I am asking any of you

> but I am truly pained

> by my (our ) situation and find it hard to get

> people to speak to about it.

> Most of our friends do not know what to say or are

> appalled at what has

> happened. I do use other support groups/people for

> my cancer problems but

> her situation is quite something else for me. She is

> not one to reach out

> to others and I feel really burdened at times by all

> that is happening now.

>

> I am wondering how others have dealt with such

> difficulties at least as

> care givers or perhaps more.

>

> Thanks for listening,

>

> Marty Siegel

>

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Marty,

The questions you pose are difficult ones and are ones

that only you and your wife can answer. I can tell

you what we did, and perhaps give you some

suggestions.

My husband Rob was diagnosed 4 years ago with MSA (at

age 52). HE has all the classic symptoms and was

fortunate to get a diagnosis quickly without the

problems that many have had of long drawn out testing

and strings of docs. His movement has never been the

biggest issue, so in terms of getting around he is

still pretty good. His symptoms are primarily

autonomic, with some parkinsonism and a little ataxia

thrown in (for good measure -- HA)

As you know the prognosis for MSA is not great -- 10

years on average from diagnosis. Rob was not working

when he was diagnosed, so his decision was easy --

he's " retired " -- actually officially disabled, and

collecting disability income. It took me about 2

years to firmly decide that I would leave the

workforce and stay home with Rob. I had an executive

position, and it was very difficult for me to give up

all that I had worked to achieve, but it seemed like

it was time. Since Rob no longer drives and has

trouble remembering to take his meds, it has been good

for me to be home. He would feel very isolated and

lonely otherwise too.

The last thing is a support group for your wife. I

don't know where you live, but do try to find a group,

or even just one other person, for her to talk to.

The most touching thing that was said by a patient at

the National Support Group meeting in Boston was " You

know, I've never seen another person with my problem

before. " The isolation this disease causes is

terrible, and seeing and talking to another person

with similar problems is important.

I hope that helps,

Carol & Rob

Lexington, MA

--- Marty Siegel porpoise@...> wrote:

> Hello:

> Let me introduce myself: I am Marty Siegel.

> I have posted once or twice on this list but wish to

> ask for some general

> info to help me in my current problems.

>

> My wife has some sort of sporadic ataxia, perhaps

> OPCA and maybe MSA but

> she has not been clearly told this.

>

> Until about 8 months ago her problems while

> bothersome did not seriously

> affect our life style. My own personal medical

> problems seemed more

> worrisome (advanced prostate cancer) but in truth

> our life styles were not

> seriously affected.

> Well that was then. Now her condition which was

> deteriorating over the past

> years (she has had some problem for seven years) has

> passed a threshold. IN

> fact she can hardly walk. We bought a four wheeled

> walker for he last

> December and it has become a necessity and in fact

> may no longer be enough.

> I find that I am being thrust into the role of a

> caretaker when I am not

> worrying about my own problems. I see that there are

> a number of you who

> have gotten into this role which I find very

> painful. It hurts me to see

> her struggle to do simple things like getting into

> or out of a car or even

> sit down on a dining room chair. I feel helpless in

> knowing that there is

> nothing I can do and that her problems are only

> getting worse.

>

> We are both about 60 and are trying to reevaluate

> our lives to some extent.

> She works (or has been working) as a college

> professor at a community

> college. She had to take a leave of absence after

> fracturing her shoulder

> this past March due to a fall, but is hoping to go

> back.Its not clear she

> will be able to however. I am also employed and

> wonder if I should take

> early retirement so we can be together.

>

> IN a sense I am not sure what I am asking any of you

> but I am truly pained

> by my (our ) situation and find it hard to get

> people to speak to about it.

> Most of our friends do not know what to say or are

> appalled at what has

> happened. I do use other support groups/people for

> my cancer problems but

> her situation is quite something else for me. She is

> not one to reach out

> to others and I feel really burdened at times by all

> that is happening now.

>

> I am wondering how others have dealt with such

> difficulties at least as

> care givers or perhaps more.

>

> Thanks for listening,

>

> Marty Siegel

>

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>