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(This note is 47 lines long. You may want to save it and read it later at your leisure). This is for Darlene and the many other caregivers who truly strive to do the right thing for their loved one(s) but know that if they overdo, their own health will be increasingly compromised and that will not help anyone. I think it's difficult in a group like this, which is a mix of caregivers and patient, for the caregivers to openly voice the extent of stress they endure for fear of alarming or offending the many patients who are at various stages of their disorder and all trying bravely to carry on. I hesitate myself to speak openly about this. All I will say at this time is that I have spent my entire adult life (that is 33 years...I'm 51 right now) as sole caregiver or manager of care for persons in my immediate family with PD. I can tell you that it helps immeasureably when the patient (1) is independent enough to contribute to their own care but not obstructive to those who are earnestly trying to help them, (2) has a positive attitude (not just for themselves but for the sake of their families as well), and (3) trys to keep their sense of humor. I have had one with a positive attitude and one with a not so positive attitude and it does make a difference in the caregiver's own emotional state. On the other hand, you can't compare the circumstances of one patient with another even within the same family. As a caregiver, you need to find a way to have significant outside interests beyond the caregiving situation. During my 3+ decades in this role, I managed to finish my education, raise my children, and so far, work fulltime at my profession. I spend very little time wondering how I got into this situation or feeling sorry about it because that is not productive. I am "solutions" oriented and just deal with each challenge as it arises because I must. So with the help of the patient him or herself and outside assistance at some point in the course of things, it can be done. It truly is hard to find good outside help and it can become costly. I had intermittent day help for awhile, eventually a livein aide (which ultimately did not work out because she had very little relief herself and so burned out), and ultimately, in one case, hospitalization was required and nursing home care became a blessing. If I have learned anything in my life it has been that one never knows what course he/she will take until the situation arises and requires a decision. Therefore, I've learned not to pass judgment on anyone else as they make decisions about issues I could not even imagine until I was faced with them myself. Darlene, if nursing home care becomes a necessity, you have to shop around to meet your loved one's and your needs. I have not checked the archives here yet but am sure there must be info on this topic. Cleanliness for me was very important; the overall happiness (and appearance) of the residents was telling; be sure the place meets your needs in terms of level of care, and check the ratio of caregivers to patients. I went around and interviewed staff, volunteers (important to have good volunteer program) and patients in several places. Talk to patients and see if they think their needs are being met in the nursing home. Sounds tiring but just do it systematically with a positive attitude and take a friend along. There are many other issues to consider as well including finances. You just have to ask for specific information and be assertive about it. I took notes and compared places. One thing I wasn't counting on was the wonderful new dimension involvement with a nursing home meant for me personally once we found an optimal place. It's great to go visit your loved one and be so warmly welcomed by so many other people who are also glad to see you. It's even more fun to find ways to bring a little cheer to them like playing the piano for them, or bringing your kids in to play violin for them (great experience for kids too), taking them for walks or just talking. Before I needed to be involved with a nursing home, I regretably had never set foot inside one. I wish you, Darlene, and anyone else in a similar situation (notice I don't say "in your situation" because no two people are in the same situation), all the strength in the world to continue coping with your large responsiblity and with your own health problems. You will find a way. A lot would be lost were it not for the diligence of good caregivers. I think patients need to take care of their caregivers at least in terms of emotional support. Everyone needs a cheerleader now and then. Who better to do the job than the patient. Wouldn't it be neat to have a forum on ways patients have found to take care of their caregivers? God bless you all. Delana Vaughan