Re: Moving Out

[Guest guest]

I've known ppl on vents who live/ed with family/parents and had vent trained

nurses who did some of their cares......

[Guest guest]

In a message dated 5/27/02 11:00:44 AM Eastern Daylight Time,

kris@... writes:

> But because I live with my parents, I can't have 24/7 nursing care.

Where do u live? I'm in Fl, livin w/ parents and I qualify for 18 hrs. Dats

w/o a treach

~s, GRADUATE of Class 2002~

" Challenges are what make life interesting; overcoming them is what makes l

ife meaningful. "

- J. Marine

[Guest guest]

In a message dated 5/27/02 5:04:45 PM Eastern Daylight Time, kris@...

writes:

> Do both your parents work or are you in school?

Both my parents work and I just graduated from hs, but none of dat really

makes a diff

~s, GRADUATE of Class 2002~

" Challenges are what make life interesting; overcoming them is what makes l

ife meaningful. "

- J. Marine

[Guest guest]

Kristi--i wonder too, as i dont live on my own yet, but want to. As for

income, you are eligable for section 8 (low income) housing, as well as food

stamps. Section 8 means you only pay 1/3 of whatever your income is for

rent--even if your income is only $50. What you could do is get a 2 bedroom,

and then maybe have a friend or hire somebody you train to live there for free

rent in exchange for " fill in " care (like if nurses call in sick)--the

government cant ban you from having " friends " or whoever you choose help

you/care for you--they just probably have a say in who is paid. You could also

live close to home at first, so if the backup plan doesnt work, then you could

go home for parents help. Does the agency that hires/pays the nurses have a

response as to what to do if a nurse calls in sick? You could have a person

" on call " each day for back up, but then you would have to pay that person

something, and Im not sure if the agency would do that. I know there is a

way--many people like us live on their own---im still trying to figure out how

they do it also!

kris5679 <kris@...> wrote: Several of you have been telling me I

should move out of my parents

home so that I can receive 24/7 nursing care. I just don't see how! I

can't do anything for myself and since I am on a ven, I need 24/7

care. Those of you who are on your own, what do you do when your nurse

calls in sick for the day. Who takes care of you then? Several of you

keep talking about PA. I can't have a PA or a nurses aide because they

aren't trained on the vent. They can't legally touch the vent or my

trach, therefore they can't suction me, give me a bath, or anything

because they would have to go get my mom for those things so then what

kind of help are they??? My nurses call in all the time for illness or

their kid is sick or they want a vacation day and then the agencey

doesn't have anyone trained here to fill in because they have all been

scheduled already somewhere else! So that is where my parents step in.

But because I live with my parents, I can't have 24/7 nursing care.

Then another dilemma is that I only get $500 a month. How in the world

do you live on your own on that??? If I get a job to make more money,

I get $1 of that $500 taken away for every $2 I make.

Kristi

[Guest guest]

I get 12 hrs a day in home care (bathing, dressing, feeding, light house

cleaning...) .... i can hire anyone i want if they pass a background check

and if they do a " training session " by the agency (watch a video about

washing hands lol) and get shots for hepities.....

I'm on a waiting list to get an extra 8hrs aday to hire people to do whatever

(take me to school, shopping, more in home care...)

[Guest guest]

I live in Indiana and I am 23. I only get 3 hrs a day & 2 on the

weekend. Do both your parents work or are you in school? That can make

a difference too.

Kristi

> In a message dated 5/27/02 11:00:44 AM Eastern Daylight Time,

> kris@s... writes:

>

>

> > But because I live with my parents, I can't have 24/7 nursing care.

>

> Where do u live? I'm in Fl, livin w/ parents and I qualify for 18

hrs. Dats

> w/o a treach

> ~s, GRADUATE of Class 2002~

>

> " Challenges are what make life interesting; overcoming them is what

makes l

> ife meaningful. "

> - J. Marine

>

>

>

>

>

>

>

>

>

[Guest guest]

Kristi & -

My little sister lives in my 2nd bedroom and she is referd to as backup.

If she's outta town, my lil brother wants to be a doctor, so he helps

out. He's only 14 tho.

JoLynn does end up taking the raw end of the deal & has had to change or

cancel plans. She was sent to me from God! a true blessing.

feel free to ask for other details if you'd like!!!

jodi

On Mon, 27 May 2002 11:05:32 -0700 (PDT) Biancucci

<laurenmarie791@...> writes:

>

> Kristi--i wonder too, as i dont live on my own yet, but want to.

> As for income, you are eligable for section 8 (low income) housing,

> as well as food stamps. Section 8 means you only pay 1/3 of

> whatever your income is for rent--even if your income is only $50.

> What you could do is get a 2 bedroom, and then maybe have a friend

> or hire somebody you train to live there for free rent in exchange

> for " fill in " care (like if nurses call in sick)--the government

> cant ban you from having " friends " or whoever you choose help

> you/care for you--they just probably have a say in who is paid. You

> could also live close to home at first, so if the backup plan doesnt

> work, then you could go home for parents help. Does the agency that

> hires/pays the nurses have a response as to what to do if a nurse

> calls in sick? You could have a person " on call " each day for back

> up, but then you would have to pay that person something, and Im not

> sure if the agency would do that. I know there is a way--many

> people like us live on their own---im still trying to figure out how

> they do it also!

>

> kris5679 <kris@...> wrote: Several of you have been

> telling me I should move out of my parents

> home so that I can receive 24/7 nursing care. I just don't see how!

> I

> can't do anything for myself and since I am on a ven, I need 24/7

> care. Those of you who are on your own, what do you do when your

> nurse

> calls in sick for the day. Who takes care of you then? Several of

> you

> keep talking about PA. I can't have a PA or a nurses aide because

> they

> aren't trained on the vent. They can't legally touch the vent or my

> trach, therefore they can't suction me, give me a bath, or anything

> because they would have to go get my mom for those things so then

> what

> kind of help are they??? My nurses call in all the time for illness

> or

> their kid is sick or they want a vacation day and then the agencey

> doesn't have anyone trained here to fill in because they have all

> been

> scheduled already somewhere else! So that is where my parents step

> in.

> But because I live with my parents, I can't have 24/7 nursing care.

> Then another dilemma is that I only get $500 a month. How in the

> world

> do you live on your own on that??? If I get a job to make more

> money,

> I get $1 of that $500 taken away for every $2 I make.

> Kristi

>

>

>

[Guest guest]

It matters here. I was getting 8 hrs a day and they cut me back to 3.

Right before they did that, my parents had to send in signed paperwork

from their employer stating where they worked and how many hours they

worked or if either was in school they send that in. My dad works

Mon.-Fri. and my mom doesn't work except she babysitts one day a week.

They give 9 hrs on the day she babysits & 3 hrs the other days and

before I appealed this before a judge, they wouldn't even give us any

weekend hours because my dad was off but the judge decided to give us

2 hrs. I am of legal age so why do they consider me to be dependant on

my parents?

Kristi

> In a message dated 5/27/02 5:04:45 PM Eastern Daylight Time, kris@s...

> writes:

>

>

> > Do both your parents work or are you in school?

>

> Both my parents work and I just graduated from hs, but none of dat

really

> makes a diff

> ~s, GRADUATE of Class 2002~

>

> " Challenges are what make life interesting; overcoming them is what

makes l

> ife meaningful. "

> - J. Marine

>

>

>

>

>

>

>

>

>

[Guest guest]

If your sister lives with you and is capable of caring for you and

even though you are of legal age, then how do you get approved for

24/7 care? I would think I am in the same situation here. I just live

w/ my parents. I pay them rent even. Who said they have to care for

me. But oh no, the state had to know how many hours they work and if

they have any illnisses like back problems. That all determined how

many hours I get. Also, I am an only child and the rest of my family

(grandparents, aunts, uncles, friends)were given the opportunity to be

vent trained so they could just set with me while my mom runs errands

or something, but none of them would do it because its to scary for

them they think. So I have nobody I know to live with. And even if I

had a willing sister to live w/ me and care for me, its a bit scary

because what if she decided one day to get married and move out or get

a new job in another state and move, then what do you do?

Kristi

Several of you have been

> > telling me I should move out of my parents

> > home so that I can receive 24/7 nursing care. I just don't see how!

> > I

> > can't do anything for myself and since I am on a ven, I need 24/7

> > care. Those of you who are on your own, what do you do when your

> > nurse

> > calls in sick for the day. Who takes care of you then? Several of

> > you

> > keep talking about PA. I can't have a PA or a nurses aide because

> > they

> > aren't trained on the vent. They can't legally touch the vent or my

> > trach, therefore they can't suction me, give me a bath, or anything

> > because they would have to go get my mom for those things so then

> > what

> > kind of help are they??? My nurses call in all the time for illness

> > or

> > their kid is sick or they want a vacation day and then the agencey

> > doesn't have anyone trained here to fill in because they have all

> > been

> > scheduled already somewhere else! So that is where my parents step

> > in.

> > But because I live with my parents, I can't have 24/7 nursing care.

> > Then another dilemma is that I only get $500 a month. How in the

> > world

> > do you live on your own on that??? If I get a job to make more

> > money,

> > I get $1 of that $500 taken away for every $2 I make.

> > Kristi

> >

> >

> >

[Guest guest]

kristi,

they do the same here in calif...my dad works full time, mom works part time,

and my brother lives at home but is in college/works part time. Im 23 and the

state still expects all my family members to care for me if I live at home,

which is a huge burden and unrealistic! Ive told the state that my parents are

getting older and so its harder for them to care for me--that doesnt matter. I

was told if i move in w/ a roomate it will be the same---a roomate should not

have to be responsible for my care if its not part of the living arrangment! I

dont know how many more hrs id get if i moved out, they always tell me my case

will be " Re-evaluated " when that time comes. My brother does none of my care,

my dad is gone all day and my mom works til 2pm, so there's hardly somebody

always around to care for me. I use all of my hrs to pay a PA for school (which

I discussed earlier in emails), so Im on my own when nobody is home and it makes

life difficult sometimes since I cant do a lot for myself.

kris5679 <kris@...> wrote: It matters here. I was getting 8 hrs a day

and they cut me back to 3.

Right before they did that, my parents had to send in signed paperwork

from their employer stating where they worked and how many hours they

worked or if either was in school they send that in. My dad works

Mon.-Fri. and my mom doesn't work except she babysitts one day a week.

They give 9 hrs on the day she babysits & 3 hrs the other days and

before I appealed this before a judge, they wouldn't even give us any

weekend hours because my dad was off but the judge decided to give us

2 hrs. I am of legal age so why do they consider me to be dependant on

my parents?

Kristi

> In a message dated 5/27/02 5:04:45 PM Eastern Daylight Time, kris@s...

> writes:

>

>

> > Do both your parents work or are you in school?

>

> Both my parents work and I just graduated from hs, but none of dat

really

> makes a diff

> ~s, GRADUATE of Class 2002~

>

> " Challenges are what make life interesting; overcoming them is what

makes l

> ife meaningful. "

> - J. Marine

>

>

>

>

>

>

>

>

>

[Guest guest]

We knew some vent'ed quads in college who lived at our dorm...they had 24 hr

PCA's (well one each) paid by the voc rehab.

Re: Re: Moving out

In a message dated 5/27/02 5:04:45 PM Eastern Daylight Time,

kris@...

writes:

> Do both your parents work or are you in school?

Both my parents work and I just graduated from hs, but none of dat really

makes a diff

~s, GRADUATE of Class 2002~

" Challenges are what make life interesting; overcoming them is what makes l

ife meaningful. "

- J. Marine

[Guest guest]

In a message dated 5/27/2002 5:08:00 PM Central Daylight Time,

kris@... writes:

> And even if I

> had a willing sister to live w/ me and care for me, its a bit scary

> because what if she decided one day to get married and move out or get

> a new job in another state and move, then what do you do?

My personal opinion would be to try to find someone you're not related to to

be your caregiver(s). I got " lucky " and found a good guy who happens to be

my husband. I'd definitely suggest finding someone other than a significant

other to care for you full time, though. In my state, you can train people

to work for you even if you're on a vent. Try looking for independent living

on the net. If all else fails, I'd seek a lawyer.

[Guest guest]

kristi, i know the laws also vary by state. CA and MN i think are supposed to

be some of the best, as for PA/Nursing services. Do you have an independant

living center anywhere near you? If so, Id contact them. you also could look

into living w/ other disabled people--share PAs and roomates and pool some of

your hrs together.

kris5679 <kris@...> wrote: If your sister lives with you and is capable

of caring for you and

even though you are of legal age, then how do you get approved for

24/7 care? I would think I am in the same situation here. I just live

w/ my parents. I pay them rent even. Who said they have to care for

me. But oh no, the state had to know how many hours they work and if

they have any illnisses like back problems. That all determined how

many hours I get. Also, I am an only child and the rest of my family

(grandparents, aunts, uncles, friends)were given the opportunity to be

vent trained so they could just set with me while my mom runs errands

or something, but none of them would do it because its to scary for

them they think. So I have nobody I know to live with. And even if I

had a willing sister to live w/ me and care for me, its a bit scary

because what if she decided one day to get married and move out or get

a new job in another state and move, then what do you do?

Kristi

Several of you have been

> > telling me I should move out of my parents

> > home so that I can receive 24/7 nursing care. I just don't see how!

> > I

> > can't do anything for myself and since I am on a ven, I need 24/7

> > care. Those of you who are on your own, what do you do when your

> > nurse

> > calls in sick for the day. Who takes care of you then? Several of

> > you

> > keep talking about PA. I can't have a PA or a nurses aide because

> > they

> > aren't trained on the vent. They can't legally touch the vent or my

> > trach, therefore they can't suction me, give me a bath, or anything

> > because they would have to go get my mom for those things so then

> > what

> > kind of help are they??? My nurses call in all the time for illness

> > or

> > their kid is sick or they want a vacation day and then the agencey

> > doesn't have anyone trained here to fill in because they have all

> > been

> > scheduled already somewhere else! So that is where my parents step

> > in.

> > But because I live with my parents, I can't have 24/7 nursing care.

> > Then another dilemma is that I only get $500 a month. How in the

> > world

> > do you live on your own on that??? If I get a job to make more

> > money,

> > I get $1 of that $500 taken away for every $2 I make.

> > Kristi

> >

> >

> >

[Guest guest]

ohh, thats right, kristi--are you in school?--if so, dept of rehab is required

to pay for your nurse/PA during school time. I get 35 hrs per week from them

for my school PA (granted, its minimum wage pay (may be more if you need a

nurse), but its something). This could save you some hrs to be used at home.

those2@... wrote: We knew some vent'ed quads in college who lived

at our dorm...they had 24 hr

PCA's (well one each) paid by the voc rehab.

Re: Re: Moving out

In a message dated 5/27/02 5:04:45 PM Eastern Daylight Time,

kris@...

writes:

> Do both your parents work or are you in school?

Both my parents work and I just graduated from hs, but none of dat really

makes a diff

~s, GRADUATE of Class 2002~

" Challenges are what make life interesting; overcoming them is what makes l

ife meaningful. "

- J. Marine

[Guest guest]

No I am not in school. I graduated high school 5 years ago and never

went to college because I didn't see any point to.

Kristi

We knew some vent'ed quads in college who lived

at our dorm...they had 24 hr

> PCA's (well one each) paid by the voc rehab.

>

> Re: Re: Moving out

>

>

> In a message dated 5/27/02 5:04:45 PM Eastern Daylight Time,

> kris@s...

> writes:

>

>

> > Do both your parents work or are you in school?

>

> Both my parents work and I just graduated from hs, but none of dat

really

> makes a diff

> ~s, GRADUATE of Class 2002~

>

> " Challenges are what make life interesting; overcoming them is what

makes l

> ife meaningful. "

> - J. Marine

>

>

>

>

>

>

>

>

>

[Guest guest]

The point to going to college is to get in a position financially to buy a

home to move into independently.....like me!

Vicki

[Guest guest]

Just because you have money doesn't mean you are physically stable to

move out on your own. And just because you have an education, are

smart, and in your right mind doesn't mean that you are physically

capable of holding a steady full time good paying job. I am not in

the best of health but I am doing fine with my at home business and I

am financially stable and all I have is a high school diploma.

Kristi

> The point to going to college is to get in a position financially to

buy a

> home to move into independently.....like me!

>

> Vicki

[Guest guest]

Yeah for Jan!! How exciting and what an accomplishment to be BACK in her

own place!!

Happy moving!!

Jill

Mom to Mac and Kit

[Guest guest]

Rick, that's great news for your family. I hope that in 22 years when

Jordan is Jan's age he too will be able to live independently or as

independently as is possible for him. Your posts remind me of the long term

goals that I must keep in mind as I deal with the day to day of school for

Jordan. Please keep posting...

Kim ~ mom to Jordan 7 w/DS and Margaret 17 w/o

[Guest guest]

Rick

What a wonderful event for you to celebrate! And congratulations to Jan on

her new apartment. I read your emails to , and she says when she is a

grown up, she will have an apartment too. And she also says she is going to

ride her motorcycle over to see us. (Guess which goal we will work toward!)

Again, congratulations, and thanks very much for sharing with us. It means

a great deal to us parents of the younger ones.

Sharon

Mom to (10, DS) and (7)

Pawleys Island, South Carolina

My favorite quote-

" Do good things, no bad things " . , age 10, reciting her mantra

every day before school.

Moving OUT

Today, Jan and I went to New Haven to look at the apartment that she

might move into. It is right across the street from Chapel Haven (the

same building she was moving into when she came down with leukemia).

This apartment is wonderful .. just ask Jan. It has a huge living area,

currently half living room and half study, which is what Jan needs.

There is space for a TV and a computer. There was also a treadmill

which will be replaced by Jan's exercise bike (needed to get sound from

her TV).

Then there is a 'nook' that was intended as dining room. It will be the

bedroom, but we'll probably put in a drape to give it privacy. The

kitchen is small but workable. There are closets, bathroom, etc. What

more does she need? That is there, too, in the form of a storage space

to keep her bike in.

So we paid for September rent and a month and a half security deposit.

Excuse me, I meant , she paid.

Then we took a hike up West Rock where we had lunch together and hiked

down. Our walking sticks are in CA, so we did this with our own

balance. We went up the steep way and Jan is so much better than she

was a year ago. Yes it is a miracle and we have to acknowledge the many

prayers and good thoughts that may have helped.

By the end of the day, the electrical hookup, the phone, and the cable

TV were all taken care of.

Jan will have her own private room, but will be across the street from

the busy place where all her friends hang out. We saw a lot of them

today.

Rick ... who repaired the electronics for the exercise bike today as

well

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

RSYOSH@... wrote:

> how do you rig up the TV so that the sound is only available when you

> ride the exercise bike?

Becky,

It's a little bit of custom electronics. What I have now has different

electronics from the earlier versions, but basically we have a classic

old (no electronics) Tinturi exercise cycle. I've put a motion sensor

on it (a big washer that swings past a magnet with a lot of wire wrapped

around it) and that triggers some electronics that sense the washer

coming past the magnet. Once the electronics trigger, the sound stays

on until about five seconds after the pedaling stops. Nothing that

didn't come from a hardware store plus Radio Shack.

I extract the sound out of the TV to headphones, but I use connectors

that Jan can't just plug the headphones directly into. Yes, I had to

crack the case on the TV and make sure that the connection was safe.

There is a secret switch that only I know about which can be activated

to put the TV back to normal sound.

For Jan to get sound on her TV, she has to pedal and she has sound for

as long as she pedals. I get to set what the minimum resistance is, but

it can't be too high since she has to be able to do it for several

hours.

Interestingly, Jan has no trouble with this arrangement. I started it

long ago, when she was in high school and wanted a TV in her room. She

got a TVwith unlimited viewing privileges, if she pedaled. Sometimes it

has worked with speakers, but currently it works with earphones because

that's best if she is in an apartment. Unattended, she tends to turn

the volume up a little too high. Her new apartment is pretty well

insulated from the neighbors, but still it is good to keep the volume

down.

Yes, I'm an engineer and I've been building electrical things since

elementary school. I'm helped by having a daughter who has always been

strong and athletic (except for some down times the past couple of

years).

Rick

[Guest guest]

Rick and Jan,

Happy moving day from and in NY. cant wait to have her

own apartment, her own keys, car, cell phone and then a cat for herself since

her dad is allergic to cats now!

She is planning on getting a job at key food ( a supermarket) when she is 16.

Every time we go there she asks the cashiers how old they are and tells them

she will be working there when she's 16!

Anyway, Jan you are such a great inspiration to me! Good luck!

~ Mom to 12 DS and Diabetes Type 1 and 8 NY

[Guest guest]

In a message dated 9/1/2002 8:32:13 PM US Mountain Standard Time,

linman42@... writes:

> Every time we go there she asks the cashiers how old they are and tells them

>

> she will be working there when she's 16!

>

How funny! When we go to the grocery store Maverick bags our groceries and

gets VERY preturbed when the baggers try to move him out of the way.

He really does a pretty good job learning what goes in first. He is looking

forward to when he can stay there and WORK with me out of his way!

[Guest guest]

Hey, my is doing the " bagging thing " too at our store (she's 6). How

cute!

Eleanor

> Every time we go there she asks the cashiers how old they are and tells

them

>

> she will be working there when she's 16!

>

How funny! When we go to the grocery store Maverick bags our groceries and

gets VERY preturbed when the baggers try to move him out of the way.

He really does a pretty good job learning what goes in first. He is looking

forward to when he can stay there and WORK with me out of his way!

[Guest guest]

A mold research suggests ammonia. If you can't tolerate, maybe a friend can do

it, to wash things or wipe things down with, or spray/mist item with. You could

try it and see if you don't react to item. He did research with tricothecenes.

It may be that different toxins are neutralized by different substances. Have

copies made of pictures and seal important documents in plastic.

>

> I am finally getting ready to move out of my place and am stressing out. I am

finding it so hard to let go of my things. I am poor and can't really afford to

replace everything right away. I went in there to sort through stuff the other

day and ended up getting debilitating headaches and sinus pain once again.

However, this time I had joint and muscle pains. I was only in there for about 3

hours!! Is there any way to salvage things like dishes?? can't I just wash them

in vinegar? and what about pictures and things like that?? can I sell any of my

stuff? obviously telling the buyers my situation. Help, I just need a little

advice on how to handle it so, I don't infect my new place. Thank you.

>