Re: Re: When do you start thinking about a NH? P.S.

[Guest guest]

What I mean by highly functional is some have hidden disabilities like: Diabetes

or on Kidney Dialysis, but they still are highly functioning people and they

qualify for a nh. From what I see with people with dementia they are far more

needy, so why shouldn't they qualify?

No one knows how long they will have to caregive for a LO with LBD. 5 to 7

years after diagnosis being the general rule of thumb, but it can be anywhere

from 2 - 20 years as the LBD brochure states. There is no definate answer.

http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf Scroll down to

" Prognosis " at the very bottom of brochure.

Janet Colello wrote:

In response to the nh home qualifications, I'm not sure what that means about

qualify. There are people in my husband's nursing home that are highly

functional: Self - Feeding, Mentally Aware, Walk Independently. Just a burden to

some families to take them in because of their age.

My husband was constantly going in to the hospital for UTIs and Aggressiveness.

They asked me everytime he was admitted if I wanted to put him in a nh. I was

not ready, but when I was ready they got the ball rolling and it was like clock

work to get him in. I just had to find the place that I wanted him in and if

there was one available. There was never a question if he qualified. I spoke

with the Director of Nurses and said I needed a place for my husband and that he

had LBD, she showed me a room and said we can take him and that was it. I paid

out of pocket at first and then switched over to Medicaid. I had an Elder Care

Attorney that guided me all the way with what to do and when it was time to put

my husband in a nh, it all worked out fine.

adhd5464 wrote:

I especially perked up when you asked about " how long does this go

on? " .

Us, too. You don't want to run out of care, but you also don't want

Bob run himself into the ground either.

If grandma goes to a nursing does she qualify? Lewy Body alone was

not enough in our case. we could get 100 days and then have to be

out a while and then could go back. The doctor has to say she needs

it, and are you there yet?

Millie was still too strong and aggressive for assisted living and

way too robust for a nursing home. Once again, if we find ourselves

at the end of our ropes, does the doctor agree.

Maybe a short stay in a nursing home to build her back up, if that is

what you want to do, is in order. Bob could use a couple of weeks of

good sleep, and they could see if they could get her to eat in a more

social environment.

If your Mom understands it is a temporary respite for Bob, what could

she say? He could visit all he wants in the daylight hours and sleep

soundly at home. Grandma would be evaluated and you guys could gain

some perspective. You are still a caregiver and overseer while they

are in a nursing home.

You guys need the break, and if grandma would rally in a different

setting, it is worth the time and effort.

We know one good respiratory infection will probably take Millie out.

We let her run her own show as much as possible. What does grandma

think, or is she even aware enough to know the difference?

If she continues to lose weight, she won't make it three years.

I liked the idea of the nursing home on weekdays, and at home on the

weekends.

Call some nursing homes and ask what the criteria is.

They want to get paid by medicare, so they do know the rules.

It might be good to get some nursing home experience before you

really have no choice in the matter.

Mille was in a nursing home for about a month, and assisted living

about 6 weeks, and I got a snoot full of education.

You can compare grandma to the others and judge for yourself very

quickly if you waited too long.

Better you be proactive, even if you don't need their services, than

to be thrown in the first available bed, like it, or not.

Maybe your doctor thinks a nursing home is long overdue, and that Bob

has been indicating it was not time yet.

Maybe you get look for a job in one of the homes and then everybody

would be happy. Just a thought.

Hope I helped!

Carol

> > >

> > >

> > > 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=aolcmp00300000002489

> > >

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> >

> >

> >

>

>

>

>

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Welcome to LBDcaregivers.

[Guest guest]

Medicare's rules are that the person must have been in

a hospital for three days to receive payment in a

qualified nursing home. The only reason(s) they can

be placed in a NH are for occupational, physical, or

speech therapy; having intravenous drugs; and there

may be one more I'm not remembering. Medicare will

pay 80 percent of the first 20 days IF THRERE IS

IMPROVEMENT for whatever they are placed for. The

patient's secondary insurance should pick up the other

20 percent. In my husband's case, his was physical

therapy, which did not improve according to their

standards, and MC only paid the 20 days. They can

stay for 100 days, but the following 80 days will be

on your own, Medicaid, if eligible, or through LTC

insurance. Because Medicare isn't paying, the

secondary carrier would not pay either.

Actually, you can't even get put in a hospital unless

there is a very good reason. I took my husband to the

ER because he was so uncontollable I couldn't handle

him, even with the help of my SIL and grandson. We

were in ER for several hours, and they were just about

to dismiss him because he wasn't running a temp and

they said they couldn't keep him. He had a UTI, his

urine was dark golden brown with a bad odor, and he

was finally calmed down with Ativan. Had he not

started to spike a fever, they would not have kept

him. Because the hospital was so full (end of

January), he had to stay in ER most of the night

before they could even get a bed for him.

You are right - you can't just put them in the nursing

home, unless you have private pay, just because you

are tired of taking care of them. I do not know what

I would have done that night had I had to bring him

home. I could not handle a man in his condition who

was a foot taller and 30# heavier than me, dead

weight, as well as being pretty violent. After his

three-day hospital stay, they were the ones that said

I would not be able to take care of him at home, and

the social worker started the paperwork to find a NH

who would take him.

Just remember, though, that they can change so very

rapidly (his change came about in two months' time),

so if there is any indication that you might need a

NH, I would certainly be looking now for a

satisfactory one. Also, if there is any chance that

Medicaid will need to be involved, that is a long,

pretty paper-intensive process, so it would be wise to

get that looked into, too. It can be made retroactive

if qualified.

--- carol king wrote:

> When Millie had a UTI and we needed some respite,

> they put Millie in a nursing home for several weeks

> to build her back up, but inside of three weeks they

> could not find enough wrong with her to allow her to

> stay and still get paid by Medicare. They pretty

> much said she could not stay unless she were

> bedbound.

>

> LewyBody was not enough of a dx to allow her to

> stay. Incontinence, might have been enough, but not

> Lewy Body alone.

> Had she been on dialysis, or something, we miy

> have had a chance.

> Lewy Body Dementia, in, and of itself, was not

> enough.

>

> Millie was just too functional. She was stronger

> than most of the residents. Even though she was on

> a dementia ward, they were doing nothing in our

> favor to figure out a way for her to stay.

>

> She may not have needed enough services by the

> home to make her a profitable candidate. She was too

> fit to need physical threapy, and she did not need

> speech therapy, and the occupational therapist

> didn't see much she could work toimprove.

>

> Now, if we were lied to, I didn't know it, but if

> I requested her to be put in a nursing home

> tomorrow, we would probably be shoo-ed off to

> assisted living.

>

> Just because a family is tired of dealing with the

> LO, it doesn't merit a bed in Fort Myers. I suppose

> we could convince a doctor she is too dangerous, too

> violent, and then we might get some help, but

> medicare, and then medicaid, beds are very hard to

> come by in our community.

>

> If Emma ran into any of those roadblocks, I wanted

> her to be prepared. If grandma were denied, it

> would be devastating. I wanted Emma to be have a

> smooth admission experience, if need be.

>

> I am sure every state has different rules.

> Florida is such a huge retirement mecca, and with

> all the touristy stuff, we become fairly jaded about

> a lot of things.

>

> Remember, I am not long from my own father's

> stroke and 5 1/2 weeks of industrial strength

> caregiving.

>

> If no one has any problems anywhere else, then

> it's all gravy. If they run into roadblocks, they

> will know they are not alone.

>

> So, there's my take!

>

> Carol

>

>

>

>

>

>

>

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