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Topic Fighting for our needs Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2010.02.25 08:46
I'm putting this in the non-caregiver forum, for while it is caregiver related, it is also government and bureaucracy.

We as caregivers have a mountain of things we do on a daily basis. Besides the usual medical and household chores, we go through a mountain of government and laymen bureaucracy.
Whether it be fighting for disability insurance, health insurance, medicare or hospice, there is always a wave of paperwork and phonecalls to deal with.
A long time ago, in a far away place, i used to write grants as part of an appointment as Planning Commisioner in my small hometown. In this position i found that the biggest thing in dealing with the "powers that be" is lots of bull and precise wording.

Our systems of government and insurance companies deal with whiners on a daily basis. They have a tendency to overlook the well, whiners. The ones that call and are not specific enough to deal with whatever problem this whiner may have. Now i use the term, not to say we are whiners when asking questions or trying to find our way through the system. I use the term as they see it. People who are really not aware of their rights under the law and do not use the terms THEY are used to.
We have to fake it. When dealing with social workers, or any other bodies of organization, we need to at least sound like we know what we are talking about.

As some of you know i just went through a battle with SSA and disability denials but won without a hearing. As a mater of fact they sent our review to the Legal Department in Mississippi, as to make sure their butt was covered. WHY? One thing for sure the responses from this website, but also the fact that i did some online research leading me to find out about controversial tests and findings. In my journey as to this point, i believe PD and all aspects of it, are totally misunderstood by the public and government bodies. I'm sorry if i repeat myself, but, the MJF syndrome, has made it's way there. He has done so much for research in finding a cure, but in my opinion has let all folks believe that is just a "shaking" disease. Stem cell research has found it's way to the top of controversy and PD, but that's not all there is to it.

As caregivers we need to get the word out that it is a "mental" disease as well. This may upset some of you and i apologize, but one of the bigger issues i feel that we all or will deal with is the constant barage of mental conflicts whether it be medication related or just from the disease itself.

The other issue is getting the "powers that be" to understand that the intellect and dementia, are not one in the same. That dementia, ones inability or ability to hold on to current thoughts, are not the same as remembering thoughts from 10 years ago.

In dealing with hospice, as i have before, the important thing is if your area does not have the plan in place for your PDr then we have to fight to get one in place.

I'm offering this to anyone out there. If you are dealing with hospices that do not have in their plan, anything available for your situation. Let me know. They follow guidelines, usually state by state, if these guidelines are not in place WE can do something about it. If you (we) fight for it now, others down the road will already have it in place.
It's a process of gathering information, getting all the ducks in a row, so to speak. Comparing PD hospice with other disease aspects and perhaps even changing the view of this disease as just a "shaky" one.
As from what most have said here, hopsice is an awesome group of people who assist we caregivers in a time when we need it the most. They are caring people, but have "rules" to follow. If we can help change these rules, or get them to take on a "higher calling" then the future of pd patients will be better off for it.

I know it is hard, with all we have to do to "fight city hall" especially when you are in a life situation. When you are at the brink and don't know where to turn. When your loved one, is ready for that time, but you can't seem to find the help. I feel as a group, those of us who aren't battling the ends of this disease can jump in and help those who are. Its cost is time. Time is something some of us DON'T have, but others do. If we can pitch in and help with phonecalls or research, it will help us all in the future.

I am offerring my assistance to anyone who cares for me to help them out. I can do research or make phonecalls to those powers. Just let me know if i can help. My email address is

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