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Dear fabuloluws folks out there, It is not right, it just is NOT RIGHT. Is it Ivan's fault that he cannot afford to pay the money needed to attract and keep the care giver he needs? Of course not, it is that d----d disease that knocked him down in his prime earning years. A man with the incredible will power and determination as Ivan has demonstrated should not have to beg for what he desperately needs. He is not a malingerer, he is a PERSON IN NEED OF SERVICES. And if such a category does not exist in the Social Welfare Structure, then is sure ought to. But till it does, we have to DO SOMETHING about Ivan and others in his situation. Because, if he exists, then there are surely others out there like him. Maybe not so vociferous, but just as needy and in just as much pain. There must be big corporations looking for a tax exemption - what about the big care giver agencies - maybe in return for having their generosity made known amongst the Parkinson's community, they would sponsor a care giver or two, here and there. Maybe we should organise a compaign to identify possible sponsors, and then contact them to see if they are willing. But it has to be done quickly, because it is getting very cold, and Ivan and those in similar situations are in urgent need ! Come on Guys, lets get going! Hilary Blue __________________________________________________________________________________________________ Ivan M Suzman wrote: > > Dear list, > > Hi from the rocky Atlantic coastline! May I please have just a few > moments of your attention? > > I have worsening PD, and lack sources of overnight caregiver (CG) pay (I > am on social security). Hopefully, other PWP's will benefit from knowing > about my situation. > > I just don't know what more to do about locating a caregiver to stay > overnight. Medicaid here pays only $9.00 to a CG who is here throughout > the ENTIRE night - not $9.00/hour! So a CG who needs a place to live at > no cost is the only possibility. Maybe I should sell quickly and move > away to a small apartment. I could try to get that adapted to my needs > somewhat. But it seems so unlikely I can ever live independently again. > I could use the house proceeds for a while to hire someone. That might > buy a little CG time...but how much? There are many CG ads posted, but > no success after 6 months of trying. > > The repetitive off-periods after dark, are too much for them to handle, > and so I get temporary care. Also, it upsets them to see that I am > getting pain deep down my ear canals and neck and jaw area every time I > go into an off-period, along with stiff painful legs and killer toe > cramps.. I function surprisingly well when I'm on, even drive around on > errands, which fools people.. I am wearing a wool cap in the house, as > cold just worsens the pain extremely. > > Any thoughts would be appreciated. But forget about nursing homes. I am > too young, and my "assisted living center" is also my "adapted for > Parkinson's" center -- my own house -- for now anyway. > > Maybe I'm too stubborn for my own good. I don't know. > > Thank you > > Ivan Suzman 49/39/36