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Re: 27yr old

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Hi,

My sister checked into hospice. The closest center is 4hrs away. There is a

skilled facility in Miami. He needs to be on medicaid to go there. What do you

all think about a nursing home? hates to think of putting him there, but

he doesn't even remember he is in St. Louis right now.

If any of you have any information about setting up a trust account at a bank

for expenses, please let me know. Mel suggested that. agreed that would

be okay.

Should I call any of the news stations in Tulsa and see if they are interested

in Jay's story? Or wait?

Did any of you all get Guardianship of your CJD relative? Since has had

trouble with Jay's parents, she thinks she had better do something. She has an

appt. with an attny tomorrow.

Thank you all for your e-mail's,

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Diane, regarding the trust, just call a bank near you. You may want to

administer that for as she will have her hands full. Let the

contributions be sent directly to the

bank, and see if they will send back receipts. You should need only to go

review the account periodically. May have to go to the bank where she banks, or

a branch of the same

one near you. Maybe a credit union where Jay, , or one of your family

banks would do the same.

We have a lady named Dorothy Kraemer who I think lives near Tulsa, that has been

trying to get some news coverage. See if she responds to this and maybe you can

work the press

together.

Am sure the attorney will try to work the estate problems. My prayers are with

all of you. Mel in SLC

Chedpep@... wrote:

> From: Chedpep@...

>

> Hi,

>

> My sister checked into hospice. The closest center is 4hrs away. There is a

> skilled facility in Miami. He needs to be on medicaid to go there. What do you

> all think about a nursing home? hates to think of putting him there, but

> he doesn't even remember he is in St. Louis right now.

>

> If any of you have any information about setting up a trust account at a bank

> for expenses, please let me know. Mel suggested that. agreed that would

> be okay.

>

> Should I call any of the news stations in Tulsa and see if they are interested

> in Jay's story? Or wait?

>

> Did any of you all get Guardianship of your CJD relative? Since has had

> trouble with Jay's parents, she thinks she had better do something. She has an

> appt. with an attny tomorrow.

>

> Thank you all for your e-mail's,

>

>

>

> ------------------------------------------------------------------------

> Have you visited our new web site?

> http://www.onelist.com

> Onelist: Helping to create Internet communities

> ------------------------------------------------------------------------

> If you have any questions, problems, concerns, etc... please contact Liz at

LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or Beverly G

at Bevalso@....

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Hospice was by far the best for us --we were in a nursing home 10 days and

Hospice 16 ---with young children -he does not need to be at home- you need

all the help you can get - physical and emotionally ---Mel (Tx)

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My Sister in Law had to get Power of Attorney on my brother, cuz he was

unable to make life saving decisions on his own. It got ugly. He also

was taken to St. Louis. Boy, this sure is bringing back memories. My

brother got hateful, angry , etc. My mom was afraid of him, as was his

wife at times. We didn't understand what the Hell was going on. Did

this guy work at all? I am sure they can get Medicaid, but they need to

act fast, before he dies. Hang in there, and email me if you want, and

I will email you my phone #, or vice versa. I think my sister in law,

who is left with their 4 yr. old son, and your sister could if nothing

else be good support for each other, since they are so close in miles.

Annette

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Dianne,

We had a hard time with medical help also. Contact Mt. Vernon

Rehabilitation Center. My brother was there for the last 4 mths. of his

life. A Dr. Krimeid (sp) was his attending physician, and was the only

physician in 1 1/2 yrs. that even showed any compassion. I can only say

that I know what you are going through. The hell we went through with

Dr.s, and medical professionals, I wouldn't wish on anyone. I might

add, that it was at Mt. Vernon, that they took him to St. Louis, and

confirmed CJD. I don't know if they will take a person that can't be

rehabilitated. Good luck to you and your sister and family. My prayers

and thoughts are with you.

Annette

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Dee,

Make sure you see an experienced estate planning attorney. My husband is an

attorney and knew enough to know that he didn't know enough about the

intricacies of this type of situation. He/she should also help you navigate

the Medicaid issues.

We used a nursing home as I told you. It seemed the best and safest

alternative for my mother in law. She was hyperactive in the early stages,

walked, almost ran the halls of the Alzheimer's unit and didn't sleep. It was

a stable safe environment for her, although we had to hire 24-hour nurses

aides to be with her in addition to the nursing home staff. They can't be

expected to put one person to watch one patient and that's what she needed for

about 4 weeks. (The nurses aides were not covered by medicaid, but the

nursing home was fully covered.)

The attorney will guide you on trust accounts (probably no need) and

guardianship. I know in Florida that the spouse is automatically the

guardian--we didn't have to deal with that, but in Ohio we would have had to

go to court (routine) to get her considered incompetent and my father in law

appointed her guardian. It varies by state so deal with an Oklahoma attorney.

Keep the questions coming. We have a lot of information gathered through our

experiences. Take care.

Vicki

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