Need advice regarding nursing home

January 24, 2004

My fellow caregivers,

My name is Lydia and I am the one responsible for my mother who has

LBD. She was officially diagnosed about two weeks ago. I had made the

correct diagnosis prior to the neurologist seeing her. I had to take

her to the emergency room this week due to very very terrifying

hallucinations. She was admitted to a medical floor with a psy.

consult. Both the neurologists and psychiatrist confirmed LBD. She

has been hospitalized 3 times in the past three nights because she

has these hallucinations, gets out of bed and falls. In the past

year, she has been admitted to the nh, three times, only to rally and

the nursing home returns her to assisted living. I love the folks who

manage her assisted living but they say they cannot care for her and

I agree. Whenever my mother goes to the nursing home, she gets alot

of attention and actually likes having another person in the room.

She rallies because she is getting the care and attention she needs

at the nursing home and they say she has improved and can go back to

assisted living.

Once again the doctor put her in the nursing home on Friday and would

you believe, the woman who saw dancing dolls, her dead mother and

father, did not know her daughter SCORED 100% ON THE COGNITIVE TEST.

I could not believe it. Moments before she thought the month and day

was Sept. 13. We had absolutely exhausted all of our resources both

mentally and financially. I am afraid they will not keep her in this

protected evironment which she needs. Her doctor and neurologist all

recommend a nh, but because we must rely on medicare and are not

private pay we are at their mercy. Because of her financial

situation, we are applying for medicaid. I truly need your advice in

how to get her to qualify medically for the nursing home. While she

is there with the OT and PTs she does well but once she is back at

Assisted Living, she forgets and the cycle continues. She has been in

the hospital 84 times in 15 years. I cannot keep her out of the

hospital long enough to restart the medicare benefit period. Help!

and thanks for listening. Lydia

January 24, 2004

Hi Lydia,

Welcome. I'm so sorry to hear about your mother with LBD, and the

difficult times that you and your mom are going through. There may be

others here that have gone through this and can offer advice. All I

have are questions, and ones I'm sure you have already asked...

What state does your mother live in? In my state of SC (and I'm sure

all states) there is an appeals process for Medicare. The process was

slow for us (appealing an ambulance fee), but it might be worth

checking into. (Maybe provide them with LBD documentation on

'cognitive fluctuations', her neurologist's evaluation (including his

cognitive tests plus the history of repeated falls and

hospitalizations), and maybe have the assisted living submit a report

on the reasons they can no longer attend to her needs). Has your

mom's neurologist provided them with written orders stating that she

requires 'ongoing' full nursing home care? Have you asked them to

repeat their cognitive test on different times/ different days? Has

the person making the decision to release your mom consulted with your

mom's Dr.s?

Your mom passing her test with flying colors reminds me of a time my

brother took mom to the neurologist for cognitive testing. She was

asked to count backwards by 7's, starting at 100. My brother (a

computer specialist, good with math) came home shaking his head,

saying no way he could have done it so quickly and accurately.

-You said you are waiting on Medicaid acceptance. Could your mother

be place in the NH now, not under Medicare, and have the fees adjusted

retroactive back to date of admittance once Medicaid is approved? If

not, I wonder how others do it that require immediate care and have no

private pay funds?

-Have you contacted your state's ombudsmans office or the area Council

on Aging for advice or assistance? Or an elder attorney that knows

his/her way around the Medicare/Medicaid rules?

LBD is hard enough without other roadblocks. I hope you can find a

way to make this all work out soon, so your mother is in the best

possible care.

Kind regards,

Peggy

>

> My fellow caregivers,

> My name is Lydia and I am the one responsible for my mother who has

> LBD. She was officially diagnosed about two weeks ago. I had made

the

> correct diagnosis prior to the neurologist seeing her. I had to take

> her to the emergency room this week due to very very terrifying

> hallucinations. She was admitted to a medical floor with a psy.

> consult. Both the neurologists and psychiatrist confirmed LBD. She

> has been hospitalized 3 times in the past three nights because she

> has these hallucinations, gets out of bed and falls. In the past

> year, she has been admitted to the nh, three times, only to rally

and

> the nursing home returns her to assisted living. I love the folks

who

> manage her assisted living but they say they cannot care for her and

> I agree. Whenever my mother goes to the nursing home, she gets alot

> of attention and actually likes having another person in the room.

> She rallies because she is getting the care and attention she needs

> at the nursing home and they say she has improved and can go back to

> assisted living.

>

> Once again the doctor put her in the nursing home on Friday and

would

> you believe, the woman who saw dancing dolls, her dead mother and

> father, did not know her daughter SCORED 100% ON THE COGNITIVE TEST.

> I could not believe it. Moments before she thought the month and day

> was Sept. 13. We had absolutely exhausted all of our resources both

> mentally and financially. I am afraid they will not keep her in this

> protected evironment which she needs. Her doctor and neurologist all

> recommend a nh, but because we must rely on medicare and are not

> private pay we are at their mercy. Because of her financial

> situation, we are applying for medicaid. I truly need your advice in

> how to get her to qualify medically for the nursing home. While she

> is there with the OT and PTs she does well but once she is back at

> Assisted Living, she forgets and the cycle continues. She has been

in

> the hospital 84 times in 15 years. I cannot keep her out of the

> hospital long enough to restart the medicare benefit period. Help!

> and thanks for listening. Lydia

January 24, 2004