Re: Re: When do you start thinking about a NH?/(((Emma)))

[Guest guest]

Dear Emma,

My heart is breaking for you when I read how you are so trapped at your age.

You should be able to continue your studies and have a career. Your mom has no

idea the frustrations of taking care of a LO with LBD.

It is not easy to be a caregiver of any kind, but your mom really has it a lot

easier than you do, I believe. I am sure she has her stresses too, but her

husband still has his mind I believe and is more cooperative and independent

most likely. I don't know all his symptoms, I think I read he has cancer, but

I'm guessing he can still reason and do things independently. You have a lot on

you watching after your grandma's well being. Your mother should be concerned

about Bob driving and should contact his doctor to have his license revoked. Of

course, then it would be taking away from transportation for your grandma and

grandpa and your mother doesn't want to face that burden of how to get them

around.

Your mother does not have a right to put you in that position. I know, you are

between a rock and a hard place, because now you can't even afford a place of

your own since you can't work full time. Have you thought of taking online

classes that you can get a job and work from home online? It could help you get

out of the rut while having to be trapped. You can go at your own pace with

online classes. Some classes, such as Medical Transcriptionist, only take 4

months and are not that much in tuition with no interest fees and can be paid in

installment payments and they can work things out for you for tuition. You have

got to build a life for yourself while you are being trapped. If you have a part

time job, you can work that too and work the job from home online for extra

income. You can work your own time from home.

You deserve a life at your age or you will forever be in a rut on making a

living for yourself and being independent in your own right.

You go girl and get to it and dig your way out. When there is a will there is

a way! No one should ever put you in a position you can't get out of. You are

not stuck.

If you take an online job, it can also help to build up a savings account, so

when you are finally out from caregiving you can afford to put money toward your

tuition for the classes and job you really want or you can afford to go out and

rent a place of your own. It can be helpful in many ways and it will build your

self-esteem that you are making extra money while being trapped.

Think about it.................. Cyber Hugs, Jan

" beachwritergirl@... " wrote:

hi emma

i'm sorry it is soooo el stinko for you just now ---

wish i had some advice.

thinking of you -- and hoping for peace for you.

ick.

ick.

ick.

big hugs,

anna

Re: When do you start thinking about a NH?

Well it seems this is going to be a non-issue again for a while anyway. My

mother

(Grandma's daughter) just came over for a quick visit and when I mentioned the

conversation Bob and I had this morning she had a bit of a fit. She is

completely opposed

to anything other than 2 choices (1) Grandma stays at home until she dies, or

(2) she goes

to a NH ONLY if she is bed-ridden and completely unaware of her surroundings.

Unfortunately that leaves it to someone other than her to be the one staying

WITH

Grandma until she dies here or is too far gone for it to matter to her where she

is because

my mom has to worry about my step-dad until HE gets better and she can't deal

with 2

sick people at once. And my uncles are sweet but useless so that means its me.

At this point if Grandma keeps eating and drinking the way she is, or NOT eating

and

drinking as the case may be, she is going to die soon no matter what. She is

existing on

600 or less calories a day at this point and about 15oz of liquid a day MAX. And

thats on

a GOOD day. She is looking thinner and thinner to me every day. Of course when I

mentioned to mom during her visit that all Grandma's rib bones and hip bones are

poking

out where they never did before she just says, " Well you're probably just extra

sensitive to

that because you're looking for it. " Yep, because I spend my days looking for

problems

and ways to be dramatic! ;-)

So far Bob's physical health goes he has held up fine but his mental health and

decision

making skills seem to be suffering. He's turning into Eeyore more and more all

the time

and not in a fuzzy cute way! And he wrecked his car a week and a half ago

because he

freaked out because Grandma was crying and instead of calling ME or an ambulance

he

put her in the car and tried to drive her to the ER even though he KNOWS he

isn't

supposed to drive at night per his eye doctor. (he has glaucoma AND just had his

cataracts removed) He turned left (from a dead stop at a red light) and over

shot the turn

and hit a telephone poll. Luckily he hit it so lightly the airbags didn't even

go off but it

proves he is not able to make clear decisions.

Grandma's doctors have not made any recommendations at this point as far as her

care

needs. Although that could be because we haven't asked them.

I dunno...guess I'm just going to be stuck in the yucky place between mom and

Bob no

matter what I do.

*sigh*

Emma

>

>

> Oh my, another dear friend, Emma, with a problem. Dear, I am going to

> eagerly wait for someone that has been there to answer your question. I have

asked

> myself the same question several times.

>

> I believe it's when a caregiver can no longer handle the situation for

> whatever reason. Or, when the LO is becoming a danger to her/himself. Or,

wrecking

> a caregiver's health then action has to be taken. Only the Caregiver can

> decide this.

>

> I have told Don that as much as I love him, if he becomes violent, I will

> have to find a place for him.

>

> What about Bob? What is happening to his health? What does the Doctor say?

> There are so many variables, which don't apply to everyone.

>

> I will be glad to hear what others have to say on this.

>

> Love so much dear one,

> Imogene

>

>

> In a message dated 1/6/2008 8:10:18 AM Central Standard Time,

> emsyfay@... writes:

>

> Hey all!

> So I had a conversation with Bob (grandma's husband) this morning that is

> making me

> start to wonder if we should be beginning to look at a NH for grandma. Bob

> is not

> sleeping hardly at all for fear of Grandma getting up in the night and

> falling. I've offered

> to sleep upstairs sometimes but have a feeling (knowing Bob) that even if

> I'm here he will

> still get up if she does. Grandma is still not eating well (we discovered

> she has gone from

> 112lbs to 104lbs in the last 2 months), she is having more toilet accidents,

> she is refusing

> to shower or brush her teeth most days, and if we don't directly make her

> use it she NEVER

> uses her walker (BIG safety risk). She has 3 years worth of long term care

> insurance but

> when do we know its time to start using it? What if we start soon and after

> 3 years she is

> still kicking?!? What could they do differently in a NH that we aren't

> doing here besides 24

> hour supervision? We've (mostly) decided that if she continues eating

> poorly that a

> feeding tube is probably not a good idea. This idea stems from the fact

> that every time

> she has had an IV in the last year and a half we have to be constantly

> vigilant to stop her

> from pulling it out. It causes constant fighting whenever she has one since

> the more you

> ask her to stop messing with it the more she DOES mess with it to the point

> that we have

> to hold her hand to stop her and she just gets more and more angry every

> minute. Is a

> longer life with a feeding tube worth the unhappiness it would most likely

> cause?

> What makes it worse is that Grandma was pretty clear in her living will that

> she wanted to

> stay at home if at all possible but she DID buy the care insurance so she

> obviously knew

> that she might need it someday. Does that mean she would be ok with it or

> was it meant

> as an absolute last resort? THAT is not clear.

> At this point I worry that if Bob doesn't get some kind of relief soon I'll

> be taking care of 2

> people and not 1. I'm afraid that as long as she is home he will sacrifice

> himself to care

> for her no matter how much I try to help.

> Such a weird decision to have to make...

> What do you all think?

> Emma

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

>

>

>

> ************ **Start the year off right. Easy ways to stay in shape.

> http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489

>

>

>

[Guest guest]

Emma, when I read your letter, it really upset me for you. I started to

write and was afraid I would say something I would regret, so I erased the

thing,

and then forgot

about it for a spell.

Jan is right on! She said it like I couldn't. Please pay heed, and make a

life for yourself. She gave some excellent suggestions.

Best to you dear girl,

Love a bunch,

Imogene

In a message dated 1/7/2008 4:09:42 AM Central Standard Time,

janetcolello@... writes:

Dear Emma,

My heart is breaking for you when I read how you are so trapped at your age.

You should be able to continue your studies and have a career. Your mom has

no idea the frustrations of taking care of a LO with LBD.

It is not easy to be a caregiver of any kind, but your mom really has it a

lot easier than you do, I believe. I am sure she has her stresses too, but her

husband still has his mind I believe and is more cooperative and independent

most likely. I don't know all his symptoms, I think I read he has cancer,

but I'm guessing he can still reason and do things independently. You have a

lot on you watching after your grandma's well being. Your mother should be

concerned about Bob driving and should contact his doctor to have his license

revoked. Of course, then it would be taking away from transportation for your

grandma and grandpa and your mother doesn't want to face that burden of how to

get them around.

Your mother does not have a right to put you in that position. I know, you

are between a rock and a hard place, because now you can't even afford a place

of your own since you can't work full time. Have you thought of taking

online classes that you can get a job and work from home online? It could help

you

get out of the rut while having to be trapped. You can go at your own pace

with online classes. Some classes, such as Medical Transcriptionist, only take

4 months and are not that much in tuition with no interest fees and can be

paid in installment payments and they can work things out for you for tuition.

You have got to build a life for yourself while you are being trapped. If

you have a part time job, you can work that too and work the job from home

online for extra income. You can work your own time from home.

You deserve a life at your age or you will forever be in a rut on making a

living for yourself and being independent in your own right.

You go girl and get to it and dig your way out. When there is a will there

is a way! No one should ever put you in a position you can't get out of. You

are not stuck.

If you take an online job, it can also help to build up a savings account,

so when you are finally out from caregiving you can afford to put money toward

your tuition for the classes and job you really want or you can afford to go

out and rent a place of your own. It can be helpful in many ways and it will

build your self-esteem that you are making extra money while being trapped.

Think about it.................. Cyber Hugs, Jan

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489