Re: intro and curious about mix of people

January 17, 2008

Ah Sue, that IS tough.

I am in a group of folks who are caring for their spouses, so have heard a lot of similar feelings. I think we DO have several members who are caregivers.

And yes, it IS hard filling out those forms for SSDI. I remember when I had to do it for me, at least sort of remember, from back in the '60s. And I also know how hard it is to summarize what has happened for me when I have to see a new doctor (if it's one who should know my background)

And yup, depression, lethargy, whatever you call it IS pretty common -- especially when you know there is someone else who will do it if you don't. Some folks in the situation who are alone also don't do it until past essential, and thus lose out on what they could have had, had they done the 'simple' tasks required. BUT first, folks have to be able to deal with the fact that they are currently disabled, NOT providing the support for their suppose that each had expected. And that in itself can take years for a few unlucky folks. In a way, it's a death -- a death of the hopes and expectations, and thus one may need to go through 'stages' , see Kubler's stages... And that might go for you too??

If you can do the forms for him, that would probably be great, I suspect, as tough as it is for both of you. Despite your feelings, you are probably the 'more able' and you do need the coverage, whatever you decide to do about your life later.

Also, have you checked locally to see if there are agencies to help? perhaps by the disability... perhaps 'general disabled' or 'insurance' -- or even United Way. Here in Massachusetts, United Way has a general help number, and they have a pretty good list of what's available. Also many hospitals do too, and some newspapers even (perhaps for their Sunday edition of what groups meet).

ANYway, power to you -- power to you both! in a very difficult time. I just heard from a friend who is finally asking for help in caring for her extremely disabled husband (she's very limited too, and they are both well over 80 -- a very different situation, but she resisted for several years in getting help, so even in later years, it can be extremely difficult admitting to needing help and laying out needs 'for all to see')

Jean

intro and curious about mix of people

Hi! I am Sue. I am wondering how many people in this group are sick as compared to caring for a sick loved one. I met my husband almost 5 years ago when we were both fit and healthy. He has had an incredibly bad run of luck, having had 2 back surgerys in 5/05 and 12/06. Currently he has been out of work again since 8/07 with severe debilitating vertigo. He is dizzy and nauseous 24 hours a day. He is not getting any kind of income at this time since he had already used up his short term disability benefits with the 2nd back surgery. We are so financially screwed at this point. I am getting SO frustrated because...this isn't at all what I had in mind for my life. I am sure no one does, it's just that he was so fit and healthy and he is so young. He is very depressed and therefore I can't really talk to him about how I honestly feel, but the truth is I feel trapped. I am tired of taking care of him. I am just plain tired. Recently we have been trying to get the mountain of forms filled out for the long term disability and social security disability, which just makes a person who is feeling depressed and worthless feel even worse because it just points out to you exactly how much you are dependent on others. I know they have to gather their info some way...but this seems cruel to the disabled person. I find myself feeling bad for him yet getting very impatient at the same time because I can't seem to get him motivated to do this stuff. Sorry to go on...thanks for listening and I look forward to being part of your community. Please let me know if there is some wonderful way for a caregiver to find the peace that currently eludes me.Sue

January 17, 2008

Hi I'm Ami, I am 34 years old with a neuroloical degenerative disorder called FRIEDRICH'S ATAXIA.

I use a chair. I can understand your frustration

Rock on, *Ami*

ABILITY is what you're capable of doing

MOTIVATION determines what you do

ATTITUDE determines how well you do it

Lou Holtz

www.myspace.com/such_comedy

www.morethanenoughtogoaround.com

From: SuzeeQQQ@...Date: Thu, 17 Jan 2008 06:04:58 +0000Subject: intro and curious about mix of people

Hi! I am Sue. I am wondering how many people in this group are sick as compared to caring for a sick loved one. I met my husband almost 5 years ago when we were both fit and healthy. He has had an incredibly bad run of luck, having had 2 back surgerys in 5/05 and 12/06. Currently he has been out of work again since 8/07 with severe debilitating vertigo. He is dizzy and nauseous 24 hours a day. He is not getting any kind of income at this time since he had already used up his short term disability benefits with the 2nd back surgery. We are so financially screwed at this point. I am getting SO frustrated because...this isn't at all what I had in mind for my life. I am sure no one does, it's just that he was so fit and healthy and he is so young. He is very depressed and therefore I can't really talk to him about how I honestly feel, but the truth is I feel trapped. I am tired of taking care of him. I am just plain tired. Recently we have been trying to get the mountain of forms filled out for the long term disability and social security disability, which just makes a person who is feeling depressed and worthless feel even worse because it just points out to you exactly how much you are dependent on others. I know they have to gather their info some way...but this seems cruel to the disabled person. I find myself feeling bad for him yet getting very impatient at the same time because I can't seem to get him motivated to do this stuff. Sorry to go on...thanks for listening and I look forward to being part of your community. Please let me know if there is some wonderful way for a caregiver to find the peace that currently eludes me.Sue Need to know the score, the latest news, or you need your Hotmail®-get your "fix" Check it out.

January 17, 2008

Thanks for responding and I will definitly check out the Kubler's stages.

I re-read my own posting and realized that I failed to mention that he is only 35 and I am 40.

I think I would be better able to handle this if we had grown old together and then he became sick, but he has been in some kind of severe situation for 3/4 of the time I have known him. I don't want to just dump him overboard because I know without a shred of a doubt that without me he would just go sit somewhere and wait to die. Knowing that...I can't tell him to go, I have too much conscience for that. I just don't know what to do. I don't know how to know when enough is enough. For today, I will keep plugging along.

Sue

Re: intro and curious about mix of people

Ah Sue, that IS tough.

I am in a group of folks who are caring for their spouses, so have heard a lot of similar feelings. I think we DO have several members who are caregivers.

And yes, it IS hard filling out those forms for SSDI. I remember when I had to do it for me, at least sort of remember, from back in the '60s. And I also know how hard it is to summarize what has happened for me when I have to see a new doctor (if it's one who should know my background)

And yup, depression, lethargy, whatever you call it IS pretty common -- especially when you know there is someone else who will do it if you don't. Some folks in the situation who are alone also don't do it until past essential, and thus lose out on what they could have had, had they done the 'simple' tasks required. BUT first, folks have to be able to deal with the fact that they are currently disabled, NOT providing the support for their suppose that each had expected. And that in itself can take years for a few unlucky folks. In a way, it's a death -- a death of the hopes and expectations, and thus one may need to go through 'stages' , see Kubler's stages... And that might go for you too??

If you can do the forms for him, that would probably be great, I suspect, as tough as it is for both of you. Despite your feelings, you are probably the 'more able' and you do need the coverage, whatever you decide to do about your life later.

Also, have you checked locally to see if there are agencies to help? perhaps by the disability... perhaps 'general disabled' or 'insurance' -- or even United Way. Here in Massachusetts, United Way has a general help number, and they have a pretty good list of what's available. Also many hospitals do too, and some newspapers even (perhaps for their Sunday edition of what groups meet).

ANYway, power to you -- power to you both! in a very difficult time. I just heard from a friend who is finally asking for help in caring for her extremely disabled husband (she's very limited too, and they are both well over 80 -- a very different situation, but she resisted for several years in getting help, so even in later years, it can be extremely difficult admitting to needing help and laying out needs 'for all to see')

Jean

intro and curious about mix of people

Hi! I am Sue. I am wondering how many people in this group are sick

as compared to caring for a sick loved one. I met my husband almost

5 years ago when we were both fit and healthy. He has had an

incredibly bad run of luck, having had 2 back surgerys in 5/05 and

12/06. Currently he has been out of work again since 8/07 with

severe debilitating vertigo. He is dizzy and nauseous 24 hours a

day. He is not getting any kind of income at this time since he had

already used up his short term disability benefits with the 2nd back

surgery. We are so financially screwed at this point. I am getting

SO frustrated because...this isn't at all what I had in mind for my

life. I am sure no one does, it's just that he was so fit and

healthy and he is so young. He is very depressed and therefore I

can't really talk to him about how I honestly feel, but the truth is

I feel trapped. I am tired of taking care of him. I am just plain

tired. Recently we have been trying to get the mountain of forms

filled out for the long term disability and social security

disability, which just makes a person who is feeling depressed and

worthless feel even worse because it just points out to you exactly

how much you are dependent on others. I know they have to gather

their info some way...but this seems cruel to the disabled person. I

find myself feeling bad for him yet getting very impatient at the

same time because I can't seem to get him motivated to do this

stuff. Sorry to go on...thanks for listening and I look forward to

being part of your community. Please let me know if there is some

wonderful way for a caregiver to find the peace that currently eludes

me.

Sue

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January 17, 2008

Hi I'm Ami, I am 34 years old with a neuroloical degenerative disorder called FRIEDRICH'S ATAXIA.

I use a chair. I can understand your frustration even though I'm the care provide-ee. My

mother has been mine for 9 years now, since I had her move in with me. It has taken just as

long to respect eachother in our lving situation. we are only human, afterall...

She has put up with my depression & bad attitude and I've put up with hers. we are both getting

through, appreciating day to day successes. We have found many helpful methods over the years.

Have you tried audio meditations? You listen and help to adjusst your brain and subconscious

mind. You can find many free audios online and I've got one that I can email to you if you'd

like to try it. Can't hurt. May be of help to you both.

Rock on, *Ami*

ABILITY is what you're capable of doing

MOTIVATION determines what you do

ATTITUDE determines how well you do it

Lou Holtz

www.myspace.com/such_comedy

www.morethanenoughtogoaround.com

From: SuzeeQQQ@...Date: Thu, 17 Jan 2008 06:04:58 +0000Subject: intro and curious about mix of people

Hi! I am Sue. I am wondering how many people in this group are sick as compared to caring for a sick loved one. I met my husband almost 5 years ago when we were both fit and healthy. He has had an incredibly bad run of luck, having had 2 back surgerys in 5/05 and 12/06. Currently he has been out of work again since 8/07 with severe debilitating vertigo. He is dizzy and nauseous 24 hours a day. He is not getting any kind of income at this time since he had already used up his short term disability benefits with the 2nd back surgery. We are so financially screwed at this point. I am getting SO frustrated because...this isn't at all what I had in mind for my life. I am sure no one does, it's just that he was so fit and healthy and he is so young. He is very depressed and therefore I can't really talk to him about how I honestly feel, but the truth is I feel trapped. I am tired of taking care of him. I am just plain tired. Recently we have been trying to get the mountain of forms filled out for the long term disability and social security disability, which just makes a person who is feeling depressed and worthless feel even worse because it just points out to you exactly how much you are dependent on others. I know they have to gather their info some way...but this seems cruel to the disabled person. I find myself feeling bad for him yet getting very impatient at the same time because I can't seem to get him motivated to do this stuff. Sorry to go on...thanks for listening and I look forward to being part of your community. Please let me know if there is some wonderful way for a caregiver to find the peace that currently eludes me.Sue Shed those extra pounds with MSN and The Biggest Loser!! Learn more.

January 17, 2008

Hi Sue. My name is ,I am also my husbands caregiver,have been for many yrs. now. He suffers from cancer that has metalized to many locations. We are going on our 31st.anniversary.We had at least 24 great years before he got sick.It is a struggle everyday,especially if you have no family like us.You have to try and make time and space for yourself or you will just want to run and hide.I don't know what state you are in but most Fed.forms are basically the same once you get thru 1 it will come 2nd.nature to you.Please fill free to email me privately if you need to. suzeeqx3 <SuzeeQQQ@...> wrote: Hi! I am Sue. I am wondering how many people in this group are sick as compared to caring for a sick loved one. I met my husband almost 5 years ago when we were both fit and healthy. He has had an incredibly bad run of

luck, having had 2 back surgerys in 5/05 and 12/06. Currently he has been out of work again since 8/07 with severe debilitating vertigo. He is dizzy and nauseous 24 hours a day. He is not getting any kind of income at this time since he had already used up his short term disability benefits with the 2nd back surgery. We are so financially screwed at this point. I am getting SO frustrated because...this isn't at all what I had in mind for my life. I am sure no one does, it's just that he was so fit and healthy and he is so young. He is very depressed and therefore I can't really talk to him about how I honestly feel, but the truth is I feel trapped. I am tired of taking care of him. I am just plain tired. Recently we have been trying to get the mountain of forms filled out for the long term disability and social security disability, which just makes a person who is feeling depressed and worthless feel even

worse because it just points out to you exactly how much you are dependent on others. I know they have to gather their info some way...but this seems cruel to the disabled person. I find myself feeling bad for him yet getting very impatient at the same time because I can't seem to get him motivated to do this stuff. Sorry to go on...thanks for listening and I look forward to being part of your community. Please let me know if there is some wonderful way for a caregiver to find the peace that currently eludes me.Sue~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./links Personal Complaints or problems:-Please contact a moderator

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January 17, 2008

Sue,

My name's (though I go by lenette on the boards- it's my

middle name) and I am the primary caregiver for my 75 year old

grandmother. I'm only 32, so I am in a bit of a different situation

than some of the caregivers you will meet. I'm not sure how many

there are on the board, or how many are in situations similar to

yours. But, I've been part of this board for about six months or so

and have found it to be a wonderful source of information and

support. Feel free to ask questions or just vent. We all tend to pass

around useful information to others, whether it be medical info or

just a " virtual hug " to someone who seems to need it.

I can't say I know about everything you've been through, as I've only

been taking care of my grandma for about a year and a half, and she's

retired, so I didn't have to do anything with government papers, but

I've heard some things from those who have. But, I too, have

financial difficulties from being a caregiver. Due to a handful of

things, I have no reliable transportation, and therefore working

would be difficult, if not almost impossible for me right now. So, I

am depending on the financial support of my parents and to some small

degree my grandma (she gives me a little money about once or twice a

month) to get by. Thankfully, all of my needs are met, and I am able

to continue to take care of her. I live in a mobile home in her

backyard which makes me available to her 24/7, I can be at her side

within minutes of her calling me.

I do understand some of the frustration and sense of " this is not how

my life's supposed to go " feelings that you have- I've had them

myself. I sometimes feel like what did I spend 4 years in college

getting a degree in business for if I'm gonna spend my life taking

care of my grandmother? But I don't regret going to college- I loved

every minute of it because I love learning, and I don't truly

consider it a waste because I feel it enriched my life. And, someday,

I may be able to use it. Nor do I really resent or regret taking care

of my grandma; I love her and I know that my taking care of her

ensures that she gets to stay in her own home and not a nursing home

or living with some other relative and feeling like she's a burden to

them. From time to time she'll say she feels she's a burden to me,

but I assure her she's not, that I wouldn't want her to be anywhere

else, and that seems to be enough for her.

I do also at times feel isolated- I have no " real " (offline) friends

that I spend time with (although I am close to my mom and one of my

cousins) and I'm not married, nor do I date...I simply don't have

time or resources to do it. So, sometimes I feel I have missed out on

a lot; but being a somewhat religious person I feel that I am where

God wants me to be, even if it's not where I thought I'd be.

The tired feeling you speak of seems to be common- I experience it

myself. My body feels tired when I have a long day or a late night,

but it's the mental tired that really seems to hang on. I'd guess

that it may be a sign of depression. But, it also may be just " burn

out " - being with somebody most of the time (or in your case, nearly

all the time) and seeing to their needs, feeling like everything you

want has to come last, or that you don't have time for it at all, is

hard on a person. The way I'm learning to combat it is, if she

doesn't need me (like when she's taking a nap, or having a good day)

I come home. True, my home's only about 150 feet from hers, but out

here, it's all about me- what I want to eat, my tv shows, my own bed,

my video games, books, and movies...my space done the way I want it.

It's not much, but to come into my room and smell my own perfume,

slip into my comfy pj's when I want and curl up with one of my

favorite books is a mini vacation. To slip into a bubble bath is

another- I find something truly engrossing to read, and let my mind

get lost in its pages; and I kind of " forget " about her for a little

while. I try to do something like this for myself several times a

week. When things really get to me- like when her fibromyalgia acts

up for several days in a row and I need a real escape, I try to

schedule some time to go to my parents' house (they come get me) and

spend the day. I'm still close enough she can get me if she truly

needs me (they only live about 10- 12 miles away) but the scenery is

different, and mom always cooks something I really like, and of

course we spend some time talking, but not necessarily about my

grandma.

Maybe you can find something like this that will help your feelings.

I hope so; we all need some kind of stress relief.

Feel free to send me messages anytime.

Sincerely,

>

> Hi! I am Sue. I am wondering how many people in this group are

sick

> as compared to caring for a sick loved one. I met my husband

almost

> 5 years ago when we were both fit and healthy. He has had an

> incredibly bad run of luck, having had 2 back surgerys in 5/05 and

> 12/06. Currently he has been out of work again since 8/07 with

> severe debilitating vertigo. He is dizzy and nauseous 24 hours a

> day. He is not getting any kind of income at this time since he

had

> already used up his short term disability benefits with the 2nd

back

> surgery. We are so financially screwed at this point. I am

getting

> SO frustrated because...this isn't at all what I had in mind for my

> life. I am sure no one does, it's just that he was so fit and

> healthy and he is so young. He is very depressed and therefore I

> can't really talk to him about how I honestly feel, but the truth

is

> I feel trapped. I am tired of taking care of him. I am just plain

> tired. Recently we have been trying to get the mountain of forms

> filled out for the long term disability and social security

> disability, which just makes a person who is feeling depressed and

> worthless feel even worse because it just points out to you exactly

> how much you are dependent on others. I know they have to gather

> their info some way...but this seems cruel to the disabled person.

I

> find myself feeling bad for him yet getting very impatient at the

> same time because I can't seem to get him motivated to do this

> stuff. Sorry to go on...thanks for listening and I look forward to

> being part of your community. Please let me know if there is some

> wonderful way for a caregiver to find the peace that currently

eludes

> me.

>

> Sue

>

January 17, 2008

I am the sick one in my marriage and my husband is my caretaker. We first

met on August 24, 1990 when I started working were he was working until he

left in October 1990 then we got reacquainted in December 1991 when he got

in contact with me about a job opening where he had started working since

then. We started dating in October 1993, got engaged on January 19, 1994

and got married on December 14, 1996 (hence my ID of " happilymarriedsince96

). I had various jobs until January 14, 1999 when I had to finally admit

that the increasing symptoms I had started getting in 1993 were making it

impossible to keep working (I had tried both indoor and outdoor jobs and

between the arthritis, fibromyalgia, airborne allergies, asthma, migraines

and UV sensitivity from lupus SLE made any type of work impossible). It

took until February 1, 2000 for my family, my husband's family (I have not

lived closer than 1000 miles from my family since 1990 while we have lived

with or within 20 miles of his family since 1994 so his family was the most

instrumental of the 2 families in convincing me that I actually was

disabled) and my husband to convince me that I really needed to apply for

disability and it took until August 2005 for me to get approved (lesson that

I learned, go to the doctor often especially while applying for disability

and make sure that the doctor who is seeing you notes each and every

complaint you have at ALL visits you make to him/her). For me, it took

seeing how hard my husband was working to TRY to make ends meet while I had

no income and not being able to do it with my being the only one seeing the

actual bills together with the actual income that finally convinced me.

ï»¿

T aka Pegasus

-- intro and curious about mix of people