This is my tenth year of PD.I am 72 now but actualy feel better than I did at the beginning, I stay active and take interest in others less lucky.
I came here tonight to tell of my experiences of fellow veterans who have pd and live i VA care homes.
Ive seen some awful examples there finally spoke up and the VA retaliated by taking away my volunteer status.I also went to some family but no help there. So you think family would care enough to stay on top but many dont.Why is anybody’s guess.It sort of turned my ambition off the subject.
The one thing think now is if it is so bad why not just leave except for many this care is free ,private would not be.
I know many are in dire trouble and many have also died who shouldnt have .Some have families and others get no support.
In my case there will never be a home in my future. From the hell Ive seen death would be a welcome alternative .
Why dont some families stand up for their loved ones???
Hi @john7805, 
A warm welcome to the forum. 
It is truly awful that people have experienced this type of care as you’ve described in any care home - this is woefully unacceptable and you are right to be concerned.
Given that you’ve stated that you live in the VA, can I safely assume that you are based in America? Please feel free to share more information on this issue with me via private message; if you’re unsure how to do this, I’m more than happy to guide you on this. I can pass this information onto my wider team so we can look into ways in which we can further support you.
In the interim, I would advise you to raise any issues with care home provision you’ve seen with the relevant regulator. In England it’s the care quality commission - https://www.cqc.org.uk/, however, this will be different where you are. This website may be a good place to start: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1121139/
I hope you find this information helpful.
Best wishes,
Reah
Forum Community Manager
Hi Reah
I live in the USA.The VA (veteran admonistration)is not my home.I have volunteered thee for eight years.
Im hoping conditions will get better with our new president and VA director
Another point is the lack of any support from the NPF or most veteran organizations.I never had much luck with organizations as most seem self serving.I volunteered for 20 years for a self help group ,i had a weekly support group I did for 20 years.Only to end because I didnt take up donations at the meeting.
Ill give you a few examples of the neglect.One veteran who also was a POW and had pd was so neglected.He often would spend his day laying on the floor in the halls and even slept there at night.I would often see him physicaly ill without any aid form his captors,The last time I saw him he was standing waiting for diner >he looked like he was starving…I heard a few months ago he had died They found him where he dually slept
The VA homes are more geared for employing people than taking care of veterans.This unit gets millions yet the veteans are left crumbs
For PD if its managed right I dont see many who would need a NH.
Families better start taking care of there parents simply because of what can happen to them.
Do you have simular problems in your veteran homes in the UK?
thanks
I have gone to so many goverment reps on this ,Ombudsman *The joke of the year,)seems medical has done a good job of killing any oversight.
Hi @john7805,
Thanks for confirming you location. I truly hope conditions change for the better as what you’ve described is really upsetting. As you live in America, the best thing you can do is raise you concerns with the relevant regulator as mentioned in my previous message and perhaps seek advice/ support from your local government official.
Of course; you are more than welcome to continue using the forum to connect with the forum community.
Best wishes,
Reah