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Topic Caregiver Survey Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2012.05.24 12:26
Here's a for a quick survey if anyone is interested...It was on the NPF website:

Are you a caregiver to someone with Parkinson's? Dr. Maryann Abendroth from Florida State University wants your help with a study about caregiver strain - take this survey today!

https://docs.google.com/spreadsheet/viewform?formkey=dFg3NUpVSTVwWjBFWXV1QlRUQTdndUE6MQ

By dkleinert On 2012.05.24 21:04
Did the survey, but I found that many of the survey's answers didn't apply to my situation. My husband does not drive, and we do have a son and his family nearby, they just don't want to help us or be involved - and none of the answers fit that issue. Wish it would have asked more about behavior. I find my pd husband's child-like behaviors the most stressful - his child-like decisions......he has no sense of the results of his actions. He continuously sets glasses with liquid in them half over the edge of a table, shelf, counter, etc.. I feel like I am caring for a 3 year old most of the time. I can't get him to put his paper underwear in a bag and take it to the outside trash can each morning from the day before. He would rather store them up in his bathroom so the entire house smells awful. He does not care if he brushes his teeth ever, brushes his hair, takes a shower, uses deoderant, he can't control his urine flow because his penis has shrunk up inside (that never was his problem - just the contrary before pd) and he can hardly get ahold of it to direct the flow, and I have begged and pleaded with him to use a urinal and then dump it in the commode, but he still gets urine everywhere in his bathroom......he gets urine on his pants and does not seem to care, have insisted he takes a change of clothes and paper underwear along anywhere we go, but he won't change and does not seem to care how he looks......I really don't know how to handle these things - wish the survey would have spoken to these frustrations....problems...not the items they asked in the survey - I feel these behavioral issues are more stressful for me. I can't comfortably take my pd husband to be in a social function because he can't be trusted not to urinate on himself when he goes to the bathroom.....it is so stressful for me....and he exagerates and lies when he talks to people when we are in social situations......I just avoid them as much as at all possible which leaves me lonely and isolated, but it is better this way I guess. KarolinaKitty - wish you lived nearby!!!


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