Doc John, may I kindly reprimand you for saying "my dad is being treated with sinemet and something else, i forget offhand". YOu should have found out what the" something else" is before you asked your question. Even though we know you are a busy guy, it would have sounded to us much more like you are "on top" of your dads condition; this is just imho.
NOw, Doc, here on this site we have only a small number of "ten-yeared" PD citizens
, one or two who have reached "almost 20 years with PD; and nobody who has reached 30 years with this disease who posts. So your "pool" of respondants to such a question is small and limited in it's scope since we are all so very different in the number and severity of PD symptoms.
YOur question is quite difficult to answer. Many of us have asked ourselves the same question and have spent hundreds of hours on line and elsewhere to try to get some kind of a feeling of what the future holds for us.
IT is also not something that we like to talk about as a group, becaus eit is , naturally, a depressing subject, and few people here wabt to dig wholeheartedly into depressing subjects.
WEll, that being said, I'll translate what i know from the perspective of a ten-yeared parkie. When the effects of sinemet start to wane, it becomes a time of franticaly trying everything in the book; titration up to a maximum dopa dose before side effects are intolerable, the addition of the different available agonists, DBS and other now not often used surgeries; alternative medicine (diet, rest in a "spa", exercise, chiropracty, etc.), addition of adjunct medication to treat specific symptoms (pain medication: trying all kinds of different antiepressants, until you hit one that does the job favorably, according to the patients perspective; muscle relaxers, etc.), and lifestyle changes (moving away from a cold climate, entering assisted living, attempting to remove any stress agents that may need some digging to identify), release from boredom is essential to ward away dementia.
That's all i have for you now, mainly because i'm trying to find the answer to the question myself. I hope that others can help you out here.
I believe that one of the most powerful medicines for a PWP is a feeling of being loved. A lot of us become "cranky" due in part to self-pity about the inability to change the downward course of the disease. It is difficult to love a cranky person, which leads to "i just can't deal with him/her anymore" on hte part of the person close to the PWP. Counseling on behalf of both the PWP and the caretaker/loved one of the PWP is difficult to find. IN the end , when a stubborn, PD advanced victim becomes unmanageable, I think it better to spare the caretaker/ loved one from further mental stress, and just institutionalize or put the PWP in some form of assisted living , where professionals can best handle the vagaries of this cruel disease. There is no point on losing your own sanity trying to deal with an obstreperous, cantankerous, unyielding PWP, if one cannot elicit change in them. THis is not "Abandonment" (since it'll probably cost you big time), an dyou shouldd not feel "guilty" about this course of action. Chances are that deep down, the PWP will know that this descision was made in the best interests of all involved. JUst my humble opinion. cs