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Loosing a parent or family member to ANY chronic disease takes its toll. My mom and dad were young when they were literally dying. I couldn't stop it. It is very hard for a doctor to watch a patient progress. Yeah sure they know it before going into the profession, but they are human. When people get irritated with me, they tell me. I would be irritated to if I kept telling someone not to do do something and it was done anyway OR by not following directions. As for doctors....I am not one, but I see what they do inorder to become a doctor. I equate becoming a doctor with becoming a priest and a soldier at the same time. They don't have alot of time nor money for a typical social life while in med school, they have to listen and learn very carefully from very intelligent and experience mentors/doctors in a limited amount of time, and they are caring for human lives. This profession is an extremely dedicated group. Some people expect them to know everything and be perfect. They can't be. When they are not, then some people sue them. SUPPORT I have support from the aides as they do from me. I have to step back though because I can't do it anymore. I am tired :) I am with an aide 8 hours a day 5 days a week. Spouses are supportive. Kids are extremely supportive even if they live away from home. IM' ing them is free. Senior centers have transportation. That may give u or the aide a break from driving while still accompanying ur mom. Caring licensed professionals exist. CARE One person cannot be a caregiver. Hire someone to help. That is some of what she saved all her life for. Some people didn't have that chance, so get some extra help. It will make life more peaceful. nancy DAVID LEWIN wrote: > Dear Maria, > > I think that it is important to realize that most doctors are > psychologically "burnt out" when their professional practice deals with > chronic and progressive diseases. For the most part my neurologists have > been cold, distant, irritated, and detached. My present neurologist > rants > and raves about politics and his wife when I see him. You have to > study PD > yourself to get answers, but keep in mind that PD itself is highly > variable. > Please also remember that are really caring people out there that you can > turn for support, but you have to find them. Don't limit yourself to > doctors when looking for support and understanding. Nurses, nurse's > aides, > support groups, etc. can be helpful. Also, I have found that friends and > family can have very unexpected reactions to the illness of a family > member. > Some run away and some pitch in and surprise you. Anyway, good luck. > David > > >> From: Maria Cuevas <[log in to unmask]> >> Reply-To: Parkinson's Information Exchange Network >> <[log in to unmask]> >> To: [log in to unmask] >> Subject: A new signee... >> Date: Wed, 5 Apr 2006 10:59:37 -0500 >> >> Hello All, >> >> My name is Maria from Texas. I've been doing research on advanced >> Parkinson's disease on the internet because my 74 year old mother's >> disease is progressing rapidly. I've recently found that there is a >> local support group in my home town so I'm looking forward to hearing >> from the group. In doing my research, I found this link. I'm 43 and >> have been given this duty/assignment of being the main caregiver for my >> mother. To me this comes naturally and though want to do this, I still >> feel overwhelmed most times. It's a learning process. >> >> >> >> I'm very frustrated with our doctors (neurologist) and feel that they >> are not taking the time to explain what is happening in detail and what >> is to happen in the future. I'm scared and I really don't know what to >> expect. I only know that my mother after having this horrible disease >> for 7 years, that the disease is progressively getting worse since >> January of this year. I want to understand what to expect, how to make >> my mother comfortable and to hopefully bring her comfort to what I >> believe is the beginning of the end. I hope to receive some feedback. >> >> >> >> I am the youngest of 6 children and it's like I will have to inform my >> other siblings and learn to train them to help me out. My father is >> from the "old school" and in the Hispanic culture, the woman is to take >> care of the man....therefore my mother has basically tended to his every >> need, has taken care of him since the day they married. I hear him >> sayhe is willing to learn how to take care of her now so I'm in the >> process >> of showing him how. > I THINK THIS IS ACROSS ALL CULTURES:) >> >> >> >> >> Does anyone out there feel that we as patients of doctors, that in our >> present time and day we are only numbers, quotas to them?? Where has >> the compassion of our professional people we know as doctors gone to? I >> need explanations, reassurance, sympathy, knowledge, comfort, really >> anything but "what's wrong with her so I can prescribe something for >> her?". Our doctors have lost that "bed side manner" technique taught in >> medical school I believe. I can go on and on in this subject. >> >> I really just need to know that caring "professional" people do exist >> and that if they even realize what it is they are not doing? >> >> >> >> Thank you all. >> >> >> >> Maria >> >> >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: >> mailto:[log in to unmask] >> In the body of the message put: signoff parkinsn > > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn