RE: Spouses as PCAs

May 30, 2003

Alana,

Do you know if it's true that if you have a ceremony like a wedding, but do

not get the certificate, that the government can get you for like evasion or

like lying about your status to SSI/VA benefits?

Kimi

May 30, 2003

In a message dated 5/30/2003 11:03:18 PM Central Daylight Time,

laurenmarie791@... writes:

> Of course in an " ideal " world we dont want all the work of our care put on

> our husbands/partners, I know i of course dont--but when youre options are

> limited as it seems there can be no chouce

Seriously though, just don't get into the situation because your relationship

*will* suffer no matter how dedicated you are to each other. I was 18 when

Will became my pca (much to his dismay, I add. He was looking at it from a

much more realistic standpoint than myself.) and I thought to myself, " oh this

will be great - we'll get to have sex in private! " I was even still living at

home at this point which gave him some relief, but not much. He's been my sole

provider since we've lived alone from 5/2000. He's passed up a lot for this

decision we both made and now we're stuck. The quality of people you find

nowadays, I wouldn't let them walk my dog much less wipe my ass. Anyway, if you

have reliable pcas now, keep 'em and keep the love life separate. =)

May 30, 2003

Jenn,

I just posed your question/dilemma to my nat'l policy wonk friend. I asked

if he had any thoughts on big picture policy reform for folks in your shoes.

I'm rusty on MiCASSA, so don't know if this legislation is the answer for

you.

Sadly, my advice is always, " Don't get married, but if your faith requires

it, get the blessings of your church/temple/masque/synagogue/spiritual

leaders and don't sign the legal license. " This doesn't help folks who are

already married.

I'll dig around.

Alana

May 30, 2003

Hi Jenn,

My husband is my PCA (we¹re not legally married however), he isn¹t my sole

PCA but is definitely my main PCA and has been my sole PCA in the past for

long periods. We don¹t have any problems with the two ³roles² and honestly

it¹s hard for me to understand the conflict some people feel about having

their S.O. be their PCA. For us it¹s just natural that he help me and it

doesn¹t effect our relationship. He¹s respectful of his ³job² and just does

it practically without getting any type of nurse or heavy handed attitude

about it. We¹ve been together over 13 years and it¹s just never been an

issue. And NO he is NOT superman!! I hire other people part time so we can

have space and independence and just to give him some free time but if I

don¹t have other people working we find ways to address each others needs ‹

it¹s just an arrangement and we talk about my cares practically, not as a

dependent/helper relationship.

On 5/30/03 8:25 PM, " jennifer " <nekrosys@...> wrote:

> This question is for the married folks out there.

>

> When I got married (almost a dozen years ago!), I lost all the scanty

> attendant care benefits I had. My husband has been my PCA ever since,

> except for the few very short periods in time when we had enough money

> to afford a roommate or a friend to supplement my care while he was at

> work.

>

> Amy mentioned how it sucked to have ones spouse as sole PCA. I agree.

> So how do you all handle it? I have never had any insurance that

> would cover it cuz I'm not on a vent. I've been on Medicare and

> private insurance through my husband's work. We are too " rich " (haha)

> to qualify for Medicaid/public assistance anymore - that ended

> immediately with my marriage. BVR is not an option cuz I'm retired

> and like to be retired. I'd be forever at the bottom of the list with

> ILCs because I'm done working. We do not have money to pay anyone out

> of pocket. Most of my family lives out of town. Most of my friends

> work during the day when I'd probably be in most need of help.

>

> And for you who have spouses as " superPCAs " , how do you prevent

> " crossing the line " ? How do you avoid sliding into a nurse/patient

> role? Sex helps, I know! <grin>

>

> Jenn

>

May 31, 2003

Some of the comments of this thread relfects a sadness I have on how

our society deals with both disabled people and the fair questions of

relationships (especially marriage). A number of the people on this

list have been unjustly denied care and benefits due to choosing to

marry legally. Others have not chosen to marry " legally " though they

are truly married and may have a deeper relationship than many

couples married civilly and religiously.

Realize that the " padre " in my screen name is real, so I obviously

have a preference as to how people live. But also realize that I find

it unjust that people are forced to make some decisions about their

deepest relationships by a society that does not seem to want to deal

with needs that real human beings face. I guess I ask the question

of those on this list from outside the U.S., are there better ways of

dealing with this question that are fairer to all the involved

people.

Finally, I do agree with Alana that people who are seeking spiritual

direction in this matter should talk with their clergy person to see

what may be appropriate and can be done.

May 31, 2003

Kimi,

I know dozens of people who've " married " , big weddings and all, but don't

do it legally. Just don't invite your social worker or SSA claims

rep. On official paperwork claim your spouse is your " roommate " . I

have never heard of a fraud claim against anyone. The gov't can't force

one to get married. Just keep some semblance of your finances separate for

show and if you have kids, do all the proper paperwork that same-sex

couples or domestic partners might do for joint custody and health care and

health insurance purposes.

Alana

At 12:17 AM 5/31/03 -0400, you wrote:

>Alana,

>Do you know if it's true that if you have a ceremony like a wedding, but do

>not get the certificate, that the government can get you for like evasion or

>like lying about your status to SSI/VA benefits?

>Kimi

May 31, 2003

,

It's pretty cool that you and your hubby have made it work so well. I'm

wondering what your level of care needs are and if that plays a role. Mine

are high...My morning get-up routine takes 3 hours and bedtime is 1-3

hours. Plus there's daytime bathrooming, food prep, and paperwork (opening

mail, writing checks, filing documents, filling out PA timesheets)...

Chuck doesn't do my care, though he cuts my food and feeds me on occasion

when we're together and I'm too tired. He also has been helping with my

I.V. meds so we can still go out but keep to the med schedule. He'll brush

my hair after a windblown adventure, and take me outta my chair and

clothing if we just can't wait for nookie. When we cook meals together

I've often had a PA cut veggies and marinade or assemble things and then he

does the other stuff. When I'm getting up, he's either on his way to work,

doing his own thing around the house, or shopping and making us

breakfast. Bedtime - We might be watching a video while my PA's working

with me, or he reads, plays computer games, does dishes...We don't live

together yet, but stay at each other's home pretty comfortably. My PA

sometimes does our dishes, I'll go to the store for him, and I'm often the

logistics queen. He doesn'tt drive so if I hire a PA to drive we might

split the cost...We share duties as much as we can.

I'm just impressed by all the different ways people make their independence

work.

Alana

At 11:54 PM 5/30/03 -0500, you wrote:

>Hi Jenn,

>

>My husband is my PCA (we¹re not legally married however), he isn¹t my sole

>PCA but is definitely my main PCA and has been my sole PCA in the past for

>long periods. We don¹t have any problems with the two ³roles² and honestly

>it¹s hard for me to understand the conflict some people feel about having

>their S.O. be their PCA. For us it¹s just natural that he help me and it

>doesn¹t effect our relationship. He¹s respectful of his ³job² and just does

>it practically without getting any type of nurse or heavy handed attitude

>about it. We¹ve been together over 13 years and it¹s just never been an

>issue. And NO he is NOT superman!! I hire other people part time so we can

>have space and independence and just to give him some free time but if I

>don¹t have other people working we find ways to address each others needs ‹

>it¹s just an arrangement and we talk about my cares practically, not as a

>dependent/helper relationship.

>

May 31, 2003

Alana -

I'll be interested to hear what your friend has to say. It really is

a dilemma for folks like me. I had friends that had a " commitment

ceremony " instead of a wedding, and it worked for them. I guess I'd

fall into the " issue of faith " catagory. Plus I really think it sucks

that the way insurance is set up currently practically makes marriage

" off limits " for folks with disabilities. It is like some deep-seated

prejudice is still lurking around that doesn't like people with

disabilities getting married and procreating.

Jenn

> Jenn,

>

> I just posed your question/dilemma to my nat'l policy wonk friend.

I asked

> if he had any thoughts on big picture policy reform for folks in

your shoes.

> I'm rusty on MiCASSA, so don't know if this legislation is the

answer for

> you.

>

> Sadly, my advice is always, " Don't get married, but if your faith

requires

> it, get the blessings of your church/temple/masque/synagogue/spiritual

> leaders and don't sign the legal license. " This doesn't help folks

who are

> already married.

>

> I'll dig around.

>

> Alana

May 31, 2003

-

You're right. I'm definately not getting a divorce just to satisfy

some stupid legal requirement. <grin> Being married is too fun anyway!

Jenn

> jenn,

> Im not married but have wondered this myself. Of course in an

" ideal " world we dont want all the work of our care put on our

husbands/partners, I know i of course dont--but when youre options are

limited as it seems there can be no chouce. the only answer ive heard

to this is couples often dont " legally " marry--but im sure youre not

gonna be first in line to get a divorce, and not being legally married

im sure can cause its own problems in terms of other legalities.

>

May 31, 2003

-

I agree for the most part. We don't really have a whole lot of

" issues " with Lee being my PCA too. He takes care of me and I take

care of him in other ways - the household day-to-day grind, the kids,

etc. I mostly just worry about him getting " burnt out " eventually.

(It's been 12 years, but my mom really played major head-games on me

when I 1st got married.) Plus, he's at work 9 hours a day. I don't

have anyway of affording attendants or even back-up help during that

time.

I just wanna make sure I keep the " spice " in my marriage, and was

wondering how folks " spice things up " .

Jenn

>

> > This question is for the married folks out there.

> >

> > When I got married (almost a dozen years ago!), I lost all the scanty

> > attendant care benefits I had. My husband has been my PCA ever since,

> > except for the few very short periods in time when we had enough money

> > to afford a roommate or a friend to supplement my care while he was at

> > work.

> >

> > Amy mentioned how it sucked to have ones spouse as sole PCA. I agree.

> > So how do you all handle it? I have never had any insurance that

> > would cover it cuz I'm not on a vent. I've been on Medicare and

> > private insurance through my husband's work. We are too " rich " (haha)

> > to qualify for Medicaid/public assistance anymore - that ended

> > immediately with my marriage. BVR is not an option cuz I'm retired

> > and like to be retired. I'd be forever at the bottom of the list with

> > ILCs because I'm done working. We do not have money to pay anyone out

> > of pocket. Most of my family lives out of town. Most of my friends

> > work during the day when I'd probably be in most need of help.

> >

> > And for you who have spouses as " superPCAs " , how do you prevent

> > " crossing the line " ? How do you avoid sliding into a nurse/patient

> > role? Sex helps, I know! <grin>

> >

> > Jenn

> >

May 31, 2003

Taya -

Just another reason to move to Finland!

Jenn

> Dear All,

>

> Padre Steve was asking about the situation regarding personal

assistance and marriage in places outside US. I live in Finland,

Northern Europe. Over here, people with extensive disabilities get

personal assistant hours regardless of their income or their marital

status. If you have a severe mobility impairment such that you need

personal assistance for many hours in a week, you can retain those

hours regardless of whether you get a job with good pay or whether you

are married.

>

> In practice, of course, the family situation may have some influence

such that the social workers think that your spouse should do at least

some of the care - so the number of hours may be slightly less than it

would be for a single person. But it is highly unlikely that personal

assistance would be completely _denied_ for somebody because they are

married. And if that should happen, then the disabled person could sue

the social authorities.

>

> Personally, I have SMA and need care 24/7. I have a personal

assistant with me 10 hours a day on weekdays, plus one weekend in a

month around the clock. This means that my husband, who is

able-bodied, helps me during the night and almost every weekend. We

are both happy with the situation.

>

> regards

> Taya

>

> Taija Heinonen

>

> UUSI POSTIOSOITE

> Seilimäki 17 B 8

> 02180 Espoo

> puh. 0400 911 686

> e-mail: taija.heinonen@p...

> URL:http://personal.inet.fi/koti/juha.heinonen/

May 31, 2003

,

You asked really good questions about privacy, PA's, and sex. I must say

it's a different situation with each PA for me.

First, when I interview folks I let them know that some of the time they'll

be getting me up or putting me to bed at my boyfriend's house and ask if

they're willing to and comfortable with that. I also generally discuss

that it's a small community with many ears so I ask that they keep personal

details about their work with me private, as I will about them. In my ad I

also state that I'm bisexual " no homophobes please. " This allows people to

self-select if they disagree with my lifestyle. While I am monogamous with

a man, many of my friends are queer and none of us want the judgement around.

My PA's are all pretty non-judgmental people. Most have become friends,

none are strictly business. My friend who's done PA work for 20 years

laughs and calls putting someone to bed with their partner " setting the

table. " My folks are fine with putting me to bed, lighting candles,

dressing me in lingerie...Later, Chuck will put on my respirator. In the

mornings we might have sex before my PA arrives and Chuck have to heelp me

pee first. It can be a little awkward with the PA bathing after sex bc of

the obvious mess, but everyone's cool...no comments except maybe ribbing

from a good friend about whether it was good or not. Chuck washes any toys

and is up in the shower before they come in. And the rule is...Knock

before entering, or you may see more than you want to.

The potentially most awkward question is, " How do you do it? " If I don't

want to answer, I laugh and say, " Carefully. " Then I might ask how they

" do it, " they blush and laugh, and it's done. I'm more comfy with others

sharing some logistical details, but it's more like regular chats btwn.

grrlfriends talking about sex.

Alana

May 31, 2003

Alana,

What about common law marriages which stipulate if you live together for x

many yrs, u r bond?

Kimi

May 31, 2003

Hi Alana,

It sounds like our level of care is about the same. I qualify for 24/7 paid

PCA hours, so i¹m about as high level as you can get although i¹m not on a

vent. I use a Bi-pap at night and that¹s why my overnight hours are

covered. I met my husband and we moved in together right away ‹ I was young

(just turned 18) -- but things always went smoothly for us and he actually

enjoys doing my cares. I knew right away I felt comfortable with him and

would ask him to do things for me that with other people I was ashamed to

admit not being able to do for myself. It helps I think that he¹s older and

has had the opportunity to live a ³free² lifestyle before being ³tied² to

me. However, I had another boyfriend that I was pretty serious with

throughout high school... He did some of my cares related to sex/dating but

his mom also helped me when we¹d get intimate at his house. My mom was

totally against our relationship and forbad me to see him so she was no help

although she was otherwise my only caregiver (I didn¹t get pca coverage at

the time). This boyfriend helped me with the bathroom, eating,

dressing/undressing and even did my hair a few times but sometimes I

preferred having his mom do these things for me and he was fine with that

too (we were both teenagers). I¹m not sure why but I always thought that

this boyfriend would not Œhold up¹ in terms of caring for me for the

long-term. He was great and wanted to marry me but I just knew I was not

totally OK asking him for things and I believed that was because part of him

was uncomfortable doing it. We¹re still friends (he¹s on his 2nd marriage)

and we talk and he still thinks I¹m wrong about him ‹ but I still believe he

would not have held up to the complexity of being hubby and pca. So I think

it¹s a complicated issue and every relationship is different and everyone¹s

personal needs (emotionally and physically speaking) are different so I

don¹t agree with the idea that having a spouse/partner doing cares is

definitely a bad thing, I think when it works it is wonderful and adds quite

a lot to the loving relationship. My husband and I got married in our

living room by ourselves with God our only witness and we couldn¹t be more

married. (I really don¹t care what the government thinks!) we keep our

finances separate.

On 5/31/03 2:39 PM, " Alana R. Theriault " <alrt@...> wrote:

> ,

>

> It's pretty cool that you and your hubby have made it work so well. I'm

> wondering what your level of care needs are and if that plays a role. Mine

> are high...My morning get-up routine takes 3 hours and bedtime is 1-3

> hours. Plus there's daytime bathrooming, food prep, and paperwork (opening

> mail, writing checks, filing documents, filling out PA timesheets)...

>

> Chuck doesn't do my care, though he cuts my food and feeds me on occasion

> when we're together and I'm too tired. He also has been helping with my

> I.V. meds so we can still go out but keep to the med schedule. He'll brush

> my hair after a windblown adventure, and take me outta my chair and

> clothing if we just can't wait for nookie. When we cook meals together

> I've often had a PA cut veggies and marinade or assemble things and then he

> does the other stuff. When I'm getting up, he's either on his way to work,

> doing his own thing around the house, or shopping and making us

> breakfast. Bedtime - We might be watching a video while my PA's working

> with me, or he reads, plays computer games, does dishes...We don't live

> together yet, but stay at each other's home pretty comfortably. My PA

> sometimes does our dishes, I'll go to the store for him, and I'm often the

> logistics queen. He doesn'tt drive so if I hire a PA to drive we might

> split the cost...We share duties as much as we can.

>

> I'm just impressed by all the different ways people make their independence

> work.

>

> Alana

>

> At 11:54 PM 5/30/03 -0500, you wrote:

>> >Hi Jenn,

>> >

>> >My husband is my PCA (we¹re not legally married however), he isn¹t my sole

>> >PCA but is definitely my main PCA and has been my sole PCA in the past for

>> >long periods. We don¹t have any problems with the two ³roles² and honestly

>> >it¹s hard for me to understand the conflict some people feel about having

>> >their S.O. be their PCA. For us it¹s just natural that he help me and it

>> >doesn¹t effect our relationship. He¹s respectful of his ³job² and just does

>> >it practically without getting any type of nurse or heavy handed attitude

>> >about it. We¹ve been together over 13 years and it¹s just never been an

>> >issue. And NO he is NOT superman!! I hire other people part time so we can

>> >have space and independence and just to give him some free time but if I

>> >don¹t have other people working we find ways to address each others needs ‹

>> >it¹s just an arrangement and we talk about my cares practically, not as a

>> >dependent/helper relationship.

>> >

>

June 1, 2003

Alana,

I think I do. I LIVE IN pa.

Kimi

June 1, 2003

Kris -

Oh yeah, baby!

Jenn

> Jenn,

> One way to keep the " spice " up is to let me watch the girls more

often so you can have fun *date nights*.... :-) -a

June 1, 2003

Kimi,

Do you live in a common law state? CA is not.

Alana

At 10:34 PM 5/31/03 -0400, you wrote:

>Alana,

>What about common law marriages which stipulate if you live together for x

>many yrs, u r bond?

>Kimi

June 1, 2003

,

It's good to hear how well your PA needs fit into your relationship. And

how interesting to hear about your high school boyfriend (and his

mother). I never dated 'til I was 20. What state are you in thatt you can

get 24 hour care? In CA we max. out at 283 hrs/month.

Alana

June 1, 2003

I know what you mean. I asked what my husband thought of this subject

the other night. He said there are sometimes it sucks for him, but he

knows it sucks equally for me at other times. Like when I have to go

to the bathroom and he won't be home from work for another 5 hours!

That sucks! I mostly just hate it when I'm sick or something and have

crapped all over myself and he has to clean me up. It doesn't exactly

make me feel " sexy " , if you know what I mean. (OK, maybe that was

little too much info...)

Jenn

> Personally, I don't think love is the issue with the spouse/pca

role. I

> don't question Will's love for me one bit, but being with someone

24/7 is bound to

> cause some problems eventually - kwim?

June 1, 2003

-

The only time I've ever really done the diaper thing is as a

precaution when we took a long plane flight to visit Lee's mom in CA.

Unfortunately for me, it seems like the diapers aren't really all

that much different cuz there is still a " mess " to clean up. If I

knew ahead of time I was going to have a rip-roaring IBS attack, I'd

definately wear 'um for " damage control " . But I very rarely ever have

warning, and I think I'd have a lot of skin breakdown issues with

daily use. Those diapers make my butt sweat!!!

Jenn

> ive never this tried myself, havent gotten desparate

enough--yet...but im wondering if those who dont have PA's or their

hubby around ever use or have considered adult diapers in the

day?.....i know the initial thought makes me want to say no way---but

if the alternative was going to the bathroom on myself, i may consider

it. i can control my bodily functions pretty well and most days go 8

or more hrs with out a pee break, but some days my body doesnt

cooperate no matter how little i drink.

>

June 1, 2003

Deena -

Currently, I am homeschooling my youngest daughter (5 years old) for

kindergarten. She helps me blend up my protein shake for lunch and

picks up things I drop, etc. If I need anything " big " , like a trip to

the potty, I just have to wait. If I get really, really sick

sometimes Lee can work from home. Once my daughter goes off to public

school next year, I'm not sure what I'll do yet. I'll have the

cordless phone latched to my ear. I'm thinking about asking my older

daughter's school (she's 9) if she can home for lunch to help me out.

The kids help with some housework - dishes, some house cleaning, some

laundry. I also have a very great friend that comes over nearly every

Saturday for a couple hours to help with the housework. For the most

part though Lee has to do most of it! It's a little easier though now

that the kids are older...

Jenn

> Hi Jenn,

>

> What do you do when he's at work and there's no one to help you?

(What's your

> daily routine?) I was also wondering how the household chores get

done? Are

> you able to do any of them or does your husband do them when he

comes home?

> Thanks :-)

>

> (~.~) Deena (~.~)

>

> Proud member of Clay Nation. He's my AmerAIKEN Idol!

June 1, 2003

Kimi,

PA is indeed a common law marriage state...Lots of info on the net about

it. It seems hard to prove you are married, so if you avoid saying you're

married on insurance policies, tax forms, property deeds, bank accounts,

etc. It's unlikely someone at SSA or County Social Services will ding you

for being married. This is of course more complicated if you're parents or

are beneficiaries in each other's life insurance policies, etc. If you

choose to cohabit and/or raise a family with your spouse but can't afford

to lose your benefits, meet with a family law attorney first to ask about

how to avoid a common law definition but protect your family's

interests. Better to make informed decisions. If kids aren't involved it

might be easiest to identify as house mates to the greater bureaucracies.

Alana

Family Law Advisor®

Articles

Common Law Marriage

Common Law marriage is alive and well in Pennsylvania. There are two ways

to be common law married. For those who do not know, common law marriage is

a legal marriage in Pennsylvania without a marriage certificate.

Here are the two ways (both of which are difficult to prove):

Holding one's self out to the world as being husband and wife: In this

method of common law marriage, husband and wife hold themselves out to the

world as though they are married. There are many factors the Court would

look at the determine if a person is married according the this standard.

By no means is this list intended to be exhaustive; these are merely some

of the factors a court might look at:

a. Tax return filing: how do you file? Single? Married?

b. What last name does wife use on her drivers license? Bank accounts?

Sign In

RE: Spouses as PCAs

Recommended Posts

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Join the conversation

Activity