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Dear Chuck,

I have copied your letter for our future.  I have gone to an elder attorney, but I am scared of the time when we have to apply for Medicaid.  This is a community property state, so we could end up in the poor house, I guess. Dick and I have talked of divorce for that very reason, but he cannot bear the thought of it.  He has this fear that I will leave him, which I never would do.  My attorney said not to get divorced, that it would not save us.  We live in New Mexico.  The disease is bad enough without the additional stress of ending up completely unable to pay bills.  As we get older, my body is getting more injured more frequently when I have to move Dick around or catch him when he falls, etc.  He does not qualify for Medicaid because our income is too high at the moment.  I am paying for some help and get three hours a week of respite from the county, but I often have to use it for dr.'s appts. or physical therapy......Once in awhile, I take a nap. 
 By the time I get to town,  which is about 40 minutes, it is time to come back.  I'm happy that your case turned out favorably.  Thank you for sharing.
Elaine, care partner for Dick




________________________________
From: "[log in to unmask]" <[log in to unmask]>
To: [log in to unmask]
Sent: Saturday, June 6, 2009 12:47:46 AM
Subject: for those old timers that remember


This is Chuck using Joyce's membership to sign on.



After nearly 28 years with PD, Joyce is still with us in (almost) fine  
condition.


After personally funding her live-in companion(s) since 1996 it was  
impossible to continue
and I had to seek alternative ideas.

Some of you might remember my sadness to have to make the decision to  
divorce Joyce in order to make
a Medicaid application for assistance.    Finally I had no  choice and we 
were divorced in 2007.  

What followed was the most difficult financial audit in my  lifetime.  
having a private business I was subjected to state and  federal examinations 
including state sales tax audits.   I passed all  without exemption!!!

Nothing can compare to a medicaid audit.   I hired the top  medicaid lawyer 
in South Carolina, called many times to testify in front of  state 
appellate and federal level counts including the US Supreme court for  medicaid 
cases.  She knows her stuff.

The current look back is five years but she found a provision to narrow it  
to three....big deal...!!

Folks,  if anyone is considering applying to Medicaid be ready to  provide 
in duplicate and triplicate every single transaction from whatever  source 
which can be shown which could be thought of as a way to reduce the  
beneficiaries assets.   For me it was a five month process and a  dossier of nearly 
4 inches of papers.  EVERYTHING  financial over $1000 was requested in more 
than one  direction.  What made it soooo difficult was that the three years 
prior  included years that we were married and co mingled  investment and 
bank  accounts.  Ouch.

Items such as helping our son's wedding,  our other son's car down  payment 
and many more normal family actions that were NOT accepted because in  
effect it was considered a gift.     believe me this  sucked.

If any lives in South Carolina there is another program under which the  
patient can apply and which is for the most part not publicly advertised.   I 
will supply the info if you ask me.   The criteria is similar but  has some 
leeway that straight medicaid does not have.

After 4 months she was accepted for 1/2 of the benefits...medical and  
medicine...leaving the actual living expenses in a nursing home (assisted living 
is not covered)   up in the air.   The bills kept coming but  since we 
didn't know if we were accepted how far back they would  cover.    so i never 
paid anything except her personal care  items.  

I contacted the state ombudslady who after hearing and reading my letter  
asking for her support agreed to act on my behalf...the lawyer was against a  
brick wall...

It worked and with a lot of tears from the lawyer, ambudslady and  ME  last 
week I received notice that she qualified for the missing link and  I was 
totally free of ALL expenses.

Joyce is now living in a nursing home in Columbia, South Carolina, using  a 
power wheelchair to get around and which opened a new world for  her.   Her 
PD symptoms continue as was for years and years...no use of  her legs 
complicated by the loss of the use of her right hand due to an car  accident.    
She is the life of the party, knows everyone,   just received an honor for 
redesigning and reorganizing the library,   credited with starting a maj jong 
game club..and known as somebody who will  always bring a smile to anyone 
near.

Nobody every accepts PD or a nursing home but she has made peace with  
herself...i think...

We remain closest friends and I am thankful to my current wife who  totally 
supports my efforts and actions for Joyce.   Although they  havent met, 
Joyce continually sends her thanks to us both.

If anyone is interested in writing to her, and although she cant write  
back,  she will dictate to me and Ill answer all mail.    I  will give her 
address to anyone interested who requests it to Joyce's private  email
at  [log in to unmask] (mailto:[log in to unmask])    


I had to share this experience for those who find themselves facing  
financial disaster due to the care giving expenses which will keep  mounting.  
The thought of divorce was the hardest but something that  MUST be done,

good luck to all..

Chuck  CG Joyce  first dx 1981  now 65 years  old.






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