I have posted many times about my daughter Allison who is 33 and in the final stages of JHD. I am a longtime member of HD Lighthouse. Today Allison went to the hospital by rescue because she was choking. After eight hours I was told that she could either go home with me or go to Laurel Lake Nursing Home, a nearby home that takes HD patients. Many years ago Allison used to live at Laurel Lake, was mistreated there, and barely survived her time there, so I declined the offer. We have applied for home hospice and have been declined by Rob Puglisi who states that HD is a mental illness and not terminal and that Allison therefore does not qualify for hospice. Her neurologist at MGH, Dr. Rosas wrote that she is in late stages, yet Mr. Puglisi will not listen to her. I have emailed Mr. Puglisi in an attempt to educate him about HD. If anyone would like to support Allison, Mr. Puglisi's email address is: RPuglisi@communityhospice.org. Any support would be appreciated as I care for Allison by myself 24/7 and could really use some help. Many Thanks, Howard

Howard.

This is just terrible. I just sent your post to Jimmy Pollard off forum. Maybe he can help. Prayers for you both.

Will

Oh my gosh Howard, I am so sorry. I think Marsha would be a good advocate for you also, why don't you send her a pm in case she doesn't read your post. Please keep us updated, and wishing you and Allison the very best

Howard, it pains me to read about your daughter's condition as well as the the difficulty with the hospice application. As if things aren't diffiuclt enough for you in taking care of your daughter.

Just wanted to say that Allison is a lovely name and if I was still in my pro-creating days as a father, I would name a daughter Allison. I bet your daughter is an angel.

Best to you and prayers your way,
Ty

I am so sorry to hear what Allison is going through. I cannot imagine the anger you are going through also.

As for the Hospice assistance, besides the Neuro, have you requested assistance from the hospitals ER Dr and thier staff. They should be able to rewrite the directive for hospice to emphisize the other ailments that are reducing her life expentancy (no reason to even state HD).

I know you are only wanting the best care, so I am not being insensitive, but do you really want the type and quaility of service hospice will provide.

Don't worry Joe, I am not going to let hospice anywhere near Allison. We had a brief introduction to them last year and it wasn't pleasant. This latest foolishness has reminded me of that and convinced me that hospice is not something that will benefit us. Quite frankly, the people at the local hospice are creepy.
Howard

How is Allison?

Joe/NC



Edited 1 time(s). Last edit at 10/21/2015 07:45AM by JFB.

How is Allison?

Joe/NC

She's in the hospital with an infection. It's kind of uncertain right now. Thanks for caring.