One of the worst things about living in an institution is the complete and utter lack of respect from various staff members. Don't get me wrong, not all of the staff are disrespectful. Some are actually respectful and extremely nice and do go above and beyond the call of duty. Others are nice, but don't always listen to me and do things the way I want. And you have others who are nice one minute and 'El Diablo' the next.
I really do put up with too much crap with certain individuals, but unfortunately these individuals are the ones that really know my care. It's a big catch 22. If I complain about so and so not doing things the way I want then I'll end up having people who don't know their arse from their elbow talking care of me, which is a total nightmare. So, I just bite my tongue and deal with my care not being done the way I want all the time. I wouldn't call it abuse or neglect, but it does get my blood boiling.
I have my routine and reasons for doing things the way I do. It's been this way for the 20 years that I have lived here. So many people here have absolutely no clue at all what it's like living with Muscular Dystrophy. If I ask to be moved a little bit and I get moved too much and tell whomever is doing my care, I'm called a pain in the ass. Some nurses/aides say it jokingly, but I'm convinced that others use the term to be hurtful or make themselves fell high and mighty or even superior. If I were to report the way I'm sometimes treated, people would be fired so fast, but I doubt the powers that be world even listen or really care.
My advice to others with DMD who have not yet had to be in a hospital for any amount of time would be to put your foot down from the get go if you are hospitalized for whatever reason. If you need your parents or legal guardian(s) to speak on your behalf, so be it. The same holds true for hired caregivers. You need to let them know who's the boss or you will more than likely be taken advantage of and treated like a second class citizen.
4 weeks ago