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In a message dated 6/13/2002 9:49:50 AM Eastern Daylight Time,

lelca@... writes:

> I tell my husband I love him and know he is trying to do the best he can

> with a serious illness. I tell him everything he can do, helps me and that

> he has to keep doing as much as he can - that in that way he is helping me.

> I tell him we will have many transitions with LBD and we'll try to solve

> the problems as we go, one at a time together. I think that just as we

> felt 'alone' before we found this group, my husband at times feels alone in

> trying to cope with LBD. He seems to respond to the affirmation that I

> know he is trying and that he won't be by himself in dealing with the

> changes. ~lula

My husband and I are on this same wave length. Way-to-go!

Bertha

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  • 2 weeks later...
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Hi Cheryl,

When we went into the ER with the initial problem, I requested Home

Health - the dr was going for a nursing home recommendation. Home

Health sent pt in but my husband wouldn't cooperate with them so they

gave me exercises and suggested equipment that would help (walker,

transfer board etc).

When we went to Omaha after what I thought was a seizure, the

neurologist's plan was to keep us there for awhile. The hospital said

we didn't meet criteria under Medicare to be transferred into the

skilled nursing area and we were discharged the next day.

Home Health is discharging us next week because we are " stable " . We are

totally homebound. This means we will have to private pay a nurse to

come in for protimes/lab work. Our private pay insurance which is a

major expense for us won't cover anything that Medicare doesn't accept.

I have been trying to find someone to put a ramp in but so far all I've

come up with is people that tell me why they can't put a ramp up - the

City code here restricts what can be done. The thing that makes me

angry about this is that one of our neighbors built a whole garage and

another neighbor added a patio onto their houses without going through

the city code process. Now I need something that is necessary and can't

seem to get it done.

I am frustrated, disgusted, tired, and angry. Aren't you glad you

asked? ;) Sorry, I just had to rant. ~lula

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Hi Cheryl,

When we went into the ER with the initial problem, I requested Home

Health - the dr was going for a nursing home recommendation. Home

Health sent pt in but my husband wouldn't cooperate with them so they

gave me exercises and suggested equipment that would help (walker,

transfer board etc).

When we went to Omaha after what I thought was a seizure, the

neurologist's plan was to keep us there for awhile. The hospital said

we didn't meet criteria under Medicare to be transferred into the

skilled nursing area and we were discharged the next day.

Home Health is discharging us next week because we are " stable " . We are

totally homebound. This means we will have to private pay a nurse to

come in for protimes/lab work. Our private pay insurance which is a

major expense for us won't cover anything that Medicare doesn't accept.

I have been trying to find someone to put a ramp in but so far all I've

come up with is people that tell me why they can't put a ramp up - the

City code here restricts what can be done. The thing that makes me

angry about this is that one of our neighbors built a whole garage and

another neighbor added a patio onto their houses without going through

the city code process. Now I need something that is necessary and can't

seem to get it done.

I am frustrated, disgusted, tired, and angry. Aren't you glad you

asked? ;) Sorry, I just had to rant. ~lula

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Hi Cheryl,

When we went into the ER with the initial problem, I requested Home

Health - the dr was going for a nursing home recommendation. Home

Health sent pt in but my husband wouldn't cooperate with them so they

gave me exercises and suggested equipment that would help (walker,

transfer board etc).

When we went to Omaha after what I thought was a seizure, the

neurologist's plan was to keep us there for awhile. The hospital said

we didn't meet criteria under Medicare to be transferred into the

skilled nursing area and we were discharged the next day.

Home Health is discharging us next week because we are " stable " . We are

totally homebound. This means we will have to private pay a nurse to

come in for protimes/lab work. Our private pay insurance which is a

major expense for us won't cover anything that Medicare doesn't accept.

I have been trying to find someone to put a ramp in but so far all I've

come up with is people that tell me why they can't put a ramp up - the

City code here restricts what can be done. The thing that makes me

angry about this is that one of our neighbors built a whole garage and

another neighbor added a patio onto their houses without going through

the city code process. Now I need something that is necessary and can't

seem to get it done.

I am frustrated, disgusted, tired, and angry. Aren't you glad you

asked? ;) Sorry, I just had to rant. ~lula

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In a message dated 6/21/02 7:21:11 PM Central Daylight Time, lelca@...

writes:

> Home Health is discharging us next week because we are " stable " . We are

> totally homebound. This means we will have to private pay a nurse to come

> in for protimes/lab work. Our private pay insurance which is a major

> expense for us won't cover anything that Medicare doesn't accept.

I simply to not understand this system! But I think what is happening to you

is why the doctor ordered hospice for us. As everyone kept explaining, it

meant more services for me as well as Bob (a chance to get out of the house),

re-evaluation in 90 days, another eval in another 90 days - and they had a

patient on it for 18 months! As it turned out, Bob was/is doing far too well

to qualify right now.

The ramp - if you had family/friend who would build it for you and it is out

of sight of the street, you might get away with it until the house is sold,

at which time you'd have to bring it up to code.

You have so many frustrations to deal with. How are you keeping your

sanity?!?

Cheryl

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In a message dated 6/21/02 7:21:11 PM Central Daylight Time, lelca@...

writes:

> Home Health is discharging us next week because we are " stable " . We are

> totally homebound. This means we will have to private pay a nurse to come

> in for protimes/lab work. Our private pay insurance which is a major

> expense for us won't cover anything that Medicare doesn't accept.

I simply to not understand this system! But I think what is happening to you

is why the doctor ordered hospice for us. As everyone kept explaining, it

meant more services for me as well as Bob (a chance to get out of the house),

re-evaluation in 90 days, another eval in another 90 days - and they had a

patient on it for 18 months! As it turned out, Bob was/is doing far too well

to qualify right now.

The ramp - if you had family/friend who would build it for you and it is out

of sight of the street, you might get away with it until the house is sold,

at which time you'd have to bring it up to code.

You have so many frustrations to deal with. How are you keeping your

sanity?!?

Cheryl

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Lula

Aside from the ramp, I have been where you are now. Seems like one huge

viscious circle. Hang in there, you will get answers!! I will pray for

this particle situation......home health care, nurses, medicare...and

all that you mentioned. Remember, there is power in prayer.

Sandie

Des Moines, IA

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Cheryl wrote:

I simply to not understand this system!

You have so many frustrations to deal with.  How are you keeping your

sanity?!?

***************************************

What I understand now is that there are a LOT of rules that the HHCare

nurses have to evaluate and justify in order for Medicare to pay, that

the drs and nurses are just as frustrated, that private insurance only

covers what Medicare covers. I'm beginning to think that's why the

tactless dr at the ER went straight for the nursing home recommendation.

I was going to be flip and say " what sanity? " but one of the good things

that did happen was that the social worker suggested I do some

counseling and our private insurance is helping us with that - I have a

certain amount of visits and then may be able to extend that depending

on what my counselor recommends. I've been to two appts and working on

grieving issues - it's hard but I think it will help me cope over the

long run. ~lula

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Cheryl wrote:

I simply to not understand this system!

You have so many frustrations to deal with.  How are you keeping your

sanity?!?

***************************************

What I understand now is that there are a LOT of rules that the HHCare

nurses have to evaluate and justify in order for Medicare to pay, that

the drs and nurses are just as frustrated, that private insurance only

covers what Medicare covers. I'm beginning to think that's why the

tactless dr at the ER went straight for the nursing home recommendation.

I was going to be flip and say " what sanity? " but one of the good things

that did happen was that the social worker suggested I do some

counseling and our private insurance is helping us with that - I have a

certain amount of visits and then may be able to extend that depending

on what my counselor recommends. I've been to two appts and working on

grieving issues - it's hard but I think it will help me cope over the

long run. ~lula

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In a message dated 6/22/02 8:38:28 PM Central Daylight Time, lelca@...

writes:

> I was going to be flip and say " what sanity? " but one of the good things

> that did happen was that the social worker suggested I do some counseling

> and our private insurance is helping us with that

Well, that's SOMETHING at least!! Glad it's helping. The grieving starts

with most of us really early on with this disease, I do believe. Cheryl

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