Originally Posted by Floridagal
.... i may not be as able as i used to be but i am still a worthy human being. i don't know how long i'll live but somedays i pray i don't wake up to put me and them out of our mutual misery.
Floridagal, first of all, knock it off with the part about not waking up and being put out of misery, and go with the part that says you are a worthy human being.
You are a worthy human being, and you do not have to endure mistreatment. I have seen a number of situations like this, but I don't want to tell you exactly what to do about it, because every case is different.
I am close to one situation where it is the caregiver who is being worn out, constantly bullied by the person with Parkinson's.
I am involved in another situation where the family caregivers give no care because they think PD is about shaky hands, and what's the big deal about that? They think the PWP is just being lazy and weird.
A common thread is that it helps a lot to have a third-party mediator, facilitator, go in and listen to their stories and set them straight; often the patient and the caregiver have not been communicating.
In one case the Neuro sent in a nurse who has 30 years experience dealing with PD patients, visiting them in their homes, and getting the whole family to smarten up and change their routine and the division of responsibilities - it's a struggle for life with a disease that does not yet have a cure, and we have to talk straight to our family and friends and nurses and doctors, and they have to talk straight in return. Some people may not know how to be a good patient or how to be a good caregiver. But empathy is a learned skill.
The patient and the helper have to SEE each other, and what this disease is doing to them, and how they are going to handle it.
In the end, though, the bottom line is very clear: you are a worthy human being. People must treat you as a worthy human being, or else they can hit the road Jack, and don't be coming back no more, no more, no more.
You will not tolerate being abused. So I would try first for seeing with new eyes with the help of a trained third person; and see with the heart; but your bottom line is that NOBODY is allowed to abuse you.
I am sure there are some experienced caregivers here - is there somebody on the caregiver thread who can chime in with some insight?
This is where the rubber meets the road - the relationships between those with Parkinson's, and all those without Parkinson's, and how it works between them. Just for starters, I keep finding people who have not the foggiest clue what Parkinson's does to you. Even though they are married to one.