Re: is still in the hosp. Request some help with info.

September 29, 2002

Yes, if it is prescribed by your Dr. Medicare pays for home health and for

the therapist ..speech (for swallowing), physical, occupational, whatever

kind the Dr sends. I have had no experience with rehab, sorry can't tell you

anything about it. Ginger

is still in the hosp. Request some help with info.

> Hi everyone,

> is still in the hosp. Out of the woods now, and getting

> more stable. The Doc's want to send him to a Rehab facility

> to do Rehab and gain strenght. They think the care is to much

> for me at home. This is our first real crisis that put in

> the hosp. He really does not want to go anywhere but home.

>

> Any feedback or advice from anyone would be appreciated. He hs

> medicare is all and not sure what all is covered regarding going

> to a Rehab or sklled nursing care. They are going tolook into what

> could be done for us if he came home. They also want us to be

> thinking about the PEG tube idea, so appreciated the emails on info on

> those. We think if we can get home health (does Medicare pay for

> that?) and PT at home we could manage to get through all this.

> Has anyone had this situation and choosen a Rehab center ?

>

> Thanks,

> and (Hilton Head Is)

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

September 30, 2002

,

What do you think about it being too much for to do at home? I'd put my money on you anytime. Remember, it's just as much stress and as hard for you to keep running back and forth if he is in rehab, not to mention on the beach babies!

Are you in the new house? If so, it would make even more sense to take Sweet home. He needs to be able to enjoy that beautiful house. More relaxing for him and you. Mark got everything he needed at home, PT, etc. and was much happier being there. Yes, it was somewhat hard for me but I even worked part-time and could still manage.

Have you talked to Calvert whatever her last name is yet about equipment for home, lift chair, adjustable bed. You might want to do that. She wrote prescriptions and letters of necessity for Mark's stuff and it did improve his quality of life(and mine). If getting in and out of bed is hard for you just rent a Hoyer Lift from that Home Oxygen place out off island. They are great to work with.

I'm voting for him to go home, believe me, it's always more comfortable at home and I think it would be easier for you.

Love & miss ya, kiss the Sweet thing for me, Becca says kiss the beach babies for her and Will and Chris!

Judy

September 30, 2002

Dear :

This is the same issue I had with Ken five years before his death. His doctors said there was no way I could continue to care for him at home, and they wanted to send him for rehab. As I understand it, Medicare will cover 30 days in rehab if you have been in the hospital for 3 nights, so this is the time to do it if you are going to. I agreed to this even though my heart was heavy, and I didn't want to. Ken said I was giving up, but he really had no choice but to go. Once he was there, he had physical therapy, etc., daily, and I was able to look the situation over and decide what to do. At the end of thirty days, the staff at rehab said they thought he should be moved into the maintenance area of the Nursing Home as there was no more they could do. I really didn't like this idea so I talked to my daughter and to many others and decided to try a full-time caregiver at home. I hired the caregivers and had them go into the Nursing home for a week to see if this might work. At the end of the week, we took ken home, and he lived for almost five more years with full-time care at home. For about six weeks, a physical Therapist and a speech therapist came to the house. After that we were pretty much on our own except for a visiting nurse who was discontinued when it was discovered that we were taking ken out of the house regularly even for several days on vacation. I got both ken and his helper memberships at our local gym, and they went three times a week. Our PT talked to the trainer there as to what Ken should do. All told, it was a long struggle but not a bad one. For us, it was the best solution to a bad situation. Ken was well taken care of, and I could go back to being his wife instead of his baby sitter. Financially, it was difficult, and I am paying the penalty now, but we would have never qualified for Medicaid which pays for long-term Nursing Home care, so this financial problem would have been just as great in the Nursing Home, and Ken was much happier at home where he was able to stay until he died. One big thing was that after Aricept we didn't have to deal with dementia issues, and Ken could be trusted not to get out of bed at night. He did continue to get up suddenly from his chair, but there was always someone with him then. If he had been a problem at night, I would have had to hire two people a day, and I could not have ever paid for that. Eventually, we had two wheelchairs, a Hoyer lift, and a hospital bed, all paid by insurance, and the last six months of his life, we had help from Hospice people who were paid completely by Medicare.

I know this is a long letter, and I hope it helps you to make a very difficult decision. Each person has to decide for himself what is the best solution for him. my children were supportive of whatever I did. One daughter came to me as I was deciding and said, "Mother, dad's life is over and yours is not. We will support any decisions you make right now." And they did.

My heart goes out to you at this time,

Barbara

PS I now have long-term insurance for myself

September 30, 2002

When Bob had a heart attack in February, the medical director of the Rehabilitation Institute of Santa Barbara came to see him in the hospital and felt he would be a good candidate for the Rehab center. We were thrilled, as I was familiar with what they did there. I was shocked when I heard it could be four-five weeks (I was thinking more like a week...). It was the best thing that could have happened to him. We learned so much and he had excellent care and PT, OT and ST. The staff was outstanding. He had a PEG tube inserted immediately after his heart attack as he could not swallow anything without aspirating. So we learned how to care for that, etc., while he was in Rehab - a good, safe, environment.

It was difficult - I work fulltime, so would go at lunch and immediately after work and stay until he'd had his evening medications - about 8:30 or 9:00. I know I became almost zombie-like, but very, very grateful for the care that he received and the knowledge that we received. Our daughter and family and our son visited him often, too, but I felt the need to be there as much as possible - just wanted to keep his spirits up. He's home - has not regained the balance and speech he had since his heart attack, but without the rehabilitation, I can't even imagine where we would be. He now goes two - three time a week to use their out-patient gym. We have a caregiver in the a.m. who takes him.

I think it is an excellent opportunity for if your Rehab center is anywhere as wonderful as ours. And now is the time - it must be from the hospital. Time passes, and he can only improve there...I wish you the best. Stay strong!

Elaine Grimmesey

September 30, 2002

Dear and : A little more than 2 years ago Bob was in the hospital after a double break in his arm. He went to a Rehab facility for about 21 days. He did not do well at the hospital or at the Rehab. It seems they are always short-staffed and I spent a lot of time there helping him out. He lacks communication skills due to the Shy-Drager so that was part of the problem. The Therapies were good and if he was the OLD BOB (pre-SDS) he would of done better. Medicare covered his stay. When he came home he was on Home Health Care with Visiting Nurses and PT also. Medicare paid for the Home Care until he got better - about a few months. After that I privately pay for Home Care about 3xs a week. When he is on PT (approximately) 2 or 3 times a year - Medicare will again cover his Home Care temporarily. Don't be disheartened by this as some do much better in Rehab and in Hospital Stays. Bob is probably too dependent on me (as some have told me) but after 52 years it's probably natural. I figured - I am at home anyway - because I also have my 98 year old mother living with me. She is independent regarding toileting and just requires a little help with dressing and a few things. When she broke her hip quite a while ago - she was in Rehab for a while and did better than Bob because she can communicate better. I also have my Mom on privately paid Homecare 2xs a week. Bob's voice has gotten so low and his speech is getting a little garbled at times so that probably added to the problem and you know "the squeaky loud wheel gets the grease". I now have a Hoyer Lift, and am still having a problem with it, but with a Hospital bed, two wheelchairs - one a Transport Chair for around the house and a Standard Big Wheel Chair for travel - a lounge-lift chair for relaxing and snacking and a house full of safety bars literally everywhere, we seem to manage. Regarding the Rehab again - the Therapies seemed to do Bob good but he had me, our daughters, his sister, my sister advocating for him. A lot of people say they could not do the care I do at home but I will know when I can no longer handle it. For now it seems like the best solution. I think everyone has to take each case individually and see how much is involved and how much they can handle.

God Bless You with your decision and we will be thinking of you and hoping for the best for both of you.

Pat Purcell - Framingham MA

P.S. My home is only 2 steps off the ground and we have all moved to the first floor by making the den a bedroom.

September 30, 2002

,

Yes, Charlotte and I went through this in 1998 and again in 2001. We

choose a rehab center close to us and via word of mouth about it's

reputation. We went back to the same center in 2001. The rehab people

were excellent both times, but the nursing care was better the first

time. Part of the problem was that a RN is required to give all

medcines and the ration of patients to RN's went from 16 to 1 to 22 to 1

between 1998 and 2001. That meant problems with medicine times and

Charlotte had troubles if she went beyond 3 hours with Sinemet.

Charlotte got her PEG in 1998 and came back strongly within a month -

well enough to come home. Since she was on Medicare the whole 28 days

in the hospital was covered 100% - after 20 - 30 days there is a copay

and after some other number of days Medicare drops you. The social

worker at the hospital can help you out there (and with choosing a rehab

center). Home health does not cover much help so a rehab center is

better from a cost standpoint if you have Medicare. Otherwise it

depends on your health insurance. Physical and speech therapy are

difficult to get at home and often get cut off if you don't get drastic

improvement - so the rehab center is better in that respect also. One

of our family was with Charlotte from 9 AM to 9 PM every day she was in

the rehab center and they did not complain about that. Your doctor can

advocate for you to get more help - but don't count on much more than 12

hours per week paid for - mainly bathing assistance as much of that sort

of thing has been cut by Medicare in the last year. I guess the war on

terror doesn't include the terror of caregiving a very sick person.

Take care, Bill Werre

=======================================================

david_mary2001 wrote:

>Hi everyone,

> is still in the hosp. Out of the woods now, and getting

>more stable. The Doc's want to send him to a Rehab facility

>to do Rehab and gain strenght. They think the care is to much

>for me at home. This is our first real crisis that put in

>the hosp. He really does not want to go anywhere but home.

>

>Any feedback or advice from anyone would be appreciated. He hs

>medicare is all and not sure what all is covered regarding going

>to a Rehab or sklled nursing care. They are going tolook into what

>could be done for us if he came home. They also want us to be

>thinking about the PEG tube idea, so appreciated the emails on info on

>those. We think if we can get home health (does Medicare pay for

>that?) and PT at home we could manage to get through all this.

>Has anyone had this situation and choosen a Rehab center ?

>

>Thanks,

> and (Hilton Head Is)

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

September 30, 2002

,

Oops forgot about the PEG. Yes Charlotte also got the PEG in 1998 and

had it until she died. It helped get fluids into her and gave her some

quality of life. After she got it, she was able to regain speech and

still eat mechanically soft foods by two months with lots of speech

therapy. She are mechanically soft foods for three years and only had

to go to pureed foods about three days before she died. Almost all

fluids went through the PEG and kept her from aspirating during those

three years.

It is not hard to take care of. Daily cleaning ot the PEG site is

essential, but it is not difficult. I kept track of what she ate during

the day via mouth and supplemented it with Ensure, Slimfast, Jevity and

other things via the tube and a pump at night.

Take care, Bill Werre

==================================================

david_mary2001 wrote:

>Hi everyone,

> is still in the hosp. Out of the woods now, and getting

>more stable. The Doc's want to send him to a Rehab facility

>to do Rehab and gain strenght. They think the care is to much

>for me at home. This is our first real crisis that put in

>the hosp. He really does not want to go anywhere but home.

>

September 30, 2002

Check out the waiver 4 program. It is for people under 60 yrs. old.

State run program.

I don't know how old ur husband is, but ur home and 1 car is not counted

as assets.

2) Some facilities are short term facilities I found out. ST meaning 3

weeks or less.

3) I have been in acute, sub acute, and a nursing home.

a)I loved the acute, but back in 97 it was 1500. a day and insurance

covered 12 days. U had 4 therapy sessions a day and one nursing

assistant for 6 patients. It is very intense , like boot camp:) No

coaxing. Rarity now.

b)subacute= ok. stayed 7 days. The doctor ordered physical therapy 2

times a day, for the first 3 days , then once a day for 1 week. Once

again with the understanding that if I did therapy without being late,

ect.

c) nursing home - 10 days paid out of pocket- 2500., 5 years ago.

approx.

--The therapist was subcontracted and didn't show up at all sometimes.

Ask if the therapist is employed by the NH or if she is through an

agency.

--food--- ensure and mush (smile), doctors ordered that my meals were

one hour after my meds, and the meal was divided in half meaning

example-

MEDS 10 AM

mush 10:30 to 11 AM

ensure drank slowly.

MEDS 1 PM, and so on.

They bring the tray, put on the bed table, by next med time 3 hours

later, my tray was usually empty.

Too hard to eat a whole meal at once for me. Once again ur hubby maybe

different, just another thing that makes my stomach, ect. more

comfortable. I don't get as tired, ect. as if I ate a meal all at once.

pillows They put pillows on my upper side rails , because of seizures

and I sleep right on the edge of the bed. I don't know how ur husband

sleeps, but just a comfort measure.

computer--I BRING MY OLD LAPTOP COMPUTER. THAT I LOVE. I HAVE SONGS THAT

I LIKE TO LISTEN TO. AND I TYPE TO STIMULATE MY BRAIN AND KEEP MY

FINGERS MOVING.

OVERALL

Outside authorized care depends on family and support system as well as

money avail. If the patient stays out of the ER and hospital, doesn't

keep falling, ect. ,then the patient gets to stay at home. There is

only my husband and he has to work. We are in our 40's. We have no

family help, neighbors all work, ect. It is cheaper to keep me at home.

I know that. I don't like nursing homes, but I also understand if a

patient starts acting unrational or there isn't enough care for them at

home, then they can't be at home. The reason I don't like nursing homes

is because there is noone my age range, ect. They don't listen to

Madonna, or U2, have large print reading material or books on tape. If

my husband tries to bring them, then they end up in another patients

room. The music disappears.

Reassure that he is coming home (if he is) and visit daily, call.

Be honest. I hated hearing nurses and family promise their loved ones

they were coming home and they weren't. I don't agree with the idea of

'not calling or visiting the first few days so the patient can get

acclimated to the surroundings.' The settings all involve 4 walls, a

bed, bathroom, dining area, boombox, and activity room. aides that show

up and aides that don't. The floors are always being polished:)

Theses are some social issues that come along with the economic ones.

They are both issues to deal with. Home care for me right now is about

100. a day plus therapy.

When a peg tube comes and the bags the costs skyrockets. It is

stressful for all parties concerned and sometimes I just block it out to

alleviate the stress of thinking about the costs. It depends on ur

family circumstances, age, cognition, dependence level, ect.

CALL 1-800-MEDICARE AND THEY CAN SEND U BOOKLET ABOUT ALL THE BENEFITS--

SKILLED NURSING, ECT. THERE IS ABOUT 7 BOOKLETS. I JUST ASK FOR ALL OF

THE BOOKLETS BECAUSE IT WEAR ME OUT TO SAY LONG SENTENCES. I HAVE TO

CONSERVE MY ENERGY AND BREATH:)

nancy m.

Werre wrote:

>

> ,

>

> Yes, Charlotte and I went through this in 1998 and again in 2001. We

> choose a rehab center close to us and via word of mouth about it's

> reputation. We went back to the same center in 2001. The rehab people

> were excellent both times, but the nursing care was better the first

> time. Part of the problem was that a RN is required to give all

> medcines and the ration of patients to RN's went from 16 to 1 to 22 to 1

> between 1998 and 2001. That meant problems with medicine times and

> Charlotte had troubles if she went beyond 3 hours with Sinemet.

>

> Charlotte got her PEG in 1998 and came back strongly within a month -

> well enough to come home. Since she was on Medicare the whole 28 days

> in the hospital was covered 100% - after 20 - 30 days there is a copay

> and after some other number of days Medicare drops you. The social

> worker at the hospital can help you out there (and with choosing a rehab

> center). Home health does not cover much help so a rehab center is

> better from a cost standpoint if you have Medicare. Otherwise it

> depends on your health insurance. Physical and speech therapy are

> difficult to get at home and often get cut off if you don't get drastic

> improvement - so the rehab center is better in that respect also. One

> of our family was with Charlotte from 9 AM to 9 PM every day she was in

> the rehab center and they did not complain about that. Your doctor can

> advocate for you to get more help - but don't count on much more than 12

> hours per week paid for - mainly bathing assistance as much of that sort

> of thing has been cut by Medicare in the last year. I guess the war on

> terror doesn't include the terror of caregiving a very sick person.

>

> Take care, Bill Werre

>

> =======================================================

>

> david_mary2001 wrote:

>

> >Hi everyone,

> > is still in the hosp. Out of the woods now, and getting

> >more stable. The Doc's want to send him to a Rehab facility

> >to do Rehab and gain strenght. They think the care is to much

> >for me at home. This is our first real crisis that put in

> >the hosp. He really does not want to go anywhere but home.

> >

> >Any feedback or advice from anyone would be appreciated. He hs

> >medicare is all and not sure what all is covered regarding going

> >to a Rehab or sklled nursing care. They are going tolook into what

> >could be done for us if he came home. They also want us to be

> >thinking about the PEG tube idea, so appreciated the emails on info on

> >those. We think if we can get home health (does Medicare pay for

> >that?) and PT at home we could manage to get through all this.

> >Has anyone had this situation and choosen a Rehab center ?

> >

> >Thanks,

> > and (Hilton Head Is)

> >

> >If you do not wish to belong to shydrager, you may

> >unsubscribe by sending a blank email to

> >

> >shydrager-unsubscribe

> >

September 30, 2011

Dear ,

From my experience Medicare will only pay if you have a Reg Nurse at the

care place. That is what I ran into with Warren when we tried to get help

at home. I don't know his age but our MediCal would not pay for any help

except when we had 24 hr. RN. If the Dr. wants him in Rehab then I believe

that MediCare will cover if the Dr writes a prescription saying he needs it.

I may be wrong but our HMO covered it when the Dr. said so.

Hope this helps a little, its so hard to know what, when and who you can

count on.

Thinking of you, S.