For those who care for someone with Parkinson's disease
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By ExhaustedBirdy On 2012.03.10 14:37
I'm so glad that I found this forum! My dynamic and beautiful mother-in-law passed away the first week of December. Since then, my husband and I have moved into my father-in-law's (the parkinson's sufferer) house to attempt to take care of him. I say "attempt" because I'm not sure I'm truly up for this particular task. My mother-in-law died of a catastrophic stroke. She had been suffering from blood pressure spikes for, around, two years. Since I've been the primary caregiver for my father-in-law I am beginning to understand the strain she must have been under trying to take care of him and this house. I'm so overwhelmed! Dad is highly intelligent, still, but some of the things he does just boggles my mind. After reading some of your posts, though, I see that a great deal of his strange behaviors can be explained. I'm not sure whether to be relieved or appalled? Know where I'm coming from? (bemused smile) It's hard to digest that his lack of modesty, nasty toileting habits, and his eating constantly (especially sweets) are either symptoms of his disease or side affects of his endless medications. At least I know, now, that there's a place I can go and vent when things become too hard to bear. Thank you.

By parkinit On 2012.03.10 19:38
Welcome, Exhausted (boy, that describes most of us!) -

Yes, you will find good advice and a camaraderie with people who are dealing with many things you are. If nothing else, we UNDERSTAND.

By Jane On 2012.03.13 12:25
I am also new to the forum. My husband of 18 years was diagnosed with PD five years ago. I am his only caretaker as he has no children or relatives that live in the area. I struggle with always feeling angry. On his good days he can dress himself and do light chores around the house. He tries to go for a walk once a day. I work full time outside of the home. For the past 2 weeks I have been trying extremely hard to keep my anger away from him. When he asks me to do something for him I willingly do it with a smile. For the past three days my husband as been totally dependent on me. Today I feel crazy. Is he more dependent because I am encouraging it with my attitude? Does he need a med adjustment or is he just having three bad days? Am I looking for an answer that doesn't exist?

By drshepard On 2012.03.13 22:28
I am wondering whether answers exist as well. I married a man with Parkinson's and, for today, I am thinking I am out of my mind. Since before Christmas he has been delusional and obsessive. I must say that some of his delusions are funny. Once I got past him urinating all over the floor on the way to the bathroom, 100 people were racing him there and he lost the race. I was thankful I had not stepped in urine when I found out that kids had a water fight in the bathroom. He called 911 because his late wife fell down the stairs (not...), and in the last 10 days he fell and I couldn't get him up and he took a handful of Sinemet, Seroquel, Luvox and Klonopin (he has no idea why). The good news is, they took him off Requip and lowered the doses of all the stuff except Sinemet. And, a hospital stay led to a stay at a rehabilition center. I feel like I have my husband back mentally...a huge difference. But, we are left absolutely hostile! I'm heading to the therapist's office tomorrow because I want to lash out at him. I left my house of 35 years, moved my business if there is anything left of it, moved to another state (even though it's an hr from my old house). I'm so angry because his spoiled children who have received free cars and free college educations don't even bother to call him. I'm feeling so discouraged today.

By phoenix On 2012.03.13 22:29
Hi Jane, Don't know if there is an answer but I totally understand. Seems like the more I do for my husband, the less he can do. Tonight he kept saying his legs were "totally paralyzed" but could walk when I was his "walker". Diagnosed 9 years, but so much worse in the past 6 months. Sorry, that's not a very optimistic reply, but this has not been a good day.

By Jane On 2012.03.14 18:47
Thank you for the replys. I feel less alone with this challenge when I hear from people like you.

By moonswife On 2012.03.14 22:01
Ladies, I am right there next to you all.

One observation, the pills need to be the right ones, the right dosage, on time, taken with or without food, with as little stress as possible (so as not to knot the gut) on a day that is the perfect temperature, and has not been too grueling.

That being said, after a night of my own asthma crisis and his DBS stimulator turned off by Home Depot security system TWICE this week, HE COOKED DINNER.

The best of surprises, and the smallest gesture is huge when done by someone dealing with PD every day.

By mylove On 2012.03.14 22:49
Sometimes I wish there was a 'Like' button like Facebook on this site, so that I could applaud some of our small victories here! :)

Your observation is SO spot on - it's not just the dosage, not just the time, not just the right drug - it's the environment, their fatigue level, the other issues they are facing... all those factors taken together. That's what makes it so hard to suss out which little thing is turning the whole process topsy turvy on its head when things go wrong. Thanks for the reminder - I think we have a natural tendency to look for the simple answer when the reality is that there are very few simple answers in this process.

And... can I be proud of your hubby vicariously? That's so sweet of him to cook dinner!

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