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 Good news for us! -- a PCA! 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Good news for us! -- a PCA!
Insurance approved Coy for ongoing Personal Care Attendant benefits. Hooray! For the temporary period while we waited for the evaluation, we were given 21 hours a week. Based on the evaluation, they’ve approved 32 hours. Oh my goodness, I can hardly believe this great new development!

My joy is on two levels. First and obviously, it is great to have help and this is very good for both Coy and for me. And secondly I feel vindicated. Not that anyone has ever called me a slacker or implied I should be able to do it all myself or questioned why I wasn’t keeping up with anything but taking care of Coy and work. But still it feels good to have objective confirmation that caregiving is very demanding, and Coy has gotten to the point where it is too demanding for one person. I'm not exhausted because I'm weak -- I'm exhausted because this is a two-person job, and I work fulltime besides!

It is sad, of course, that Coy has declined to the point where this is necessary. But since it is, I am overjoyed to have it.

I told Coy before the nurse from the insurance program came to do an assessment that I was going to tell her about his bad days -- things that he might not even remember. That I certainly wasn't going to lie to her, but she had to know about the whole picture. I explained this a couple of times. So when she asked him if he could do something and he said he could I'd say, "yes, often he is able to do that, but he usually needs cueing and sometimes he needs help."

When the interview was over, she said that she often encounters people who paint a glowing picture of the applicant's abilities. The worst cases of this were when the applicant was alone and gave all the answers himself. So, she said, I put down all their rosey answers and then they wonder why they are turned down for help!

It was hard to describe some of Coy's problems in front of him. We like to keep a postitive outlook and downplay the limitations. I'm glad I'd prepared him that I was going to tell about "Lewy days." He seemed no worse for the experience, and he loves having the attention of Nicole, his PCA.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Tue Apr 24, 2012 11:11 pm

Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Re: Good news for us! -- a PCA!
Wonderful news! What a blessing for you!! I have no idea how you are able to work and care for Coy. You must be exhausted!

Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago

Tue Apr 24, 2012 11:16 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Good news for us! -- a PCA!
I'm very glad for you, Jeanne! :P

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Tue Apr 24, 2012 11:26 pm

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Good news for us! -- a PCA!

wonderful news.. for you and coy!! what a fabulous job you have done.. and now hopefully with a bit of help, you will be able not only to help, but take lots more time to just enjoy coy..

so happy for you both!!!

about not telling the whole story... in the beginning, i tried so hard not to embarrass hubby, at the doctors, with all that had happened. i tip toed around the best i could, but felt being honest was so important, especially to get the info and help we sooooooooo needed... then i realized, sadly, he was forgetting everything i said, before we even got out the door at the doctors office...

i hate this disease...

sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..

Tue Apr 24, 2012 11:42 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Good news for us! -- a PCA!
That's great Jeanne. Is this LTC insurance or what kind of ins. is covering the PCA? That must make your life a lot less hectic and worrisome. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Apr 25, 2012 9:20 am

Joined: Sun Mar 11, 2012 7:43 pm
Posts: 19
Post Re: Good news for us! -- a PCA!
Great news Jeanne! You are very smart to be upfront about the "Lewy days". It's a shame that people let pride get in the way of receiving the help they need so badly.

Kim-wife of Brent, 51 yrs old, newly diagnosed

Tue May 01, 2012 11:20 am

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: Good news for us! -- a PCA!
Jeanne, I am so happy for you and for Coy! This is wonderful news. You deserve this so much.
I am curious, too, about what kind of insurance approved this much needed help for you. Personal Care Attendant---I had not heard that term before. Can you tell us more about the process of getting this kind of help?

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Thu May 03, 2012 12:24 am
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