For those who care for someone with Parkinson's disease
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The last week has been fairly good (no falls, no fainting, so new meds must be working), and the better it has been, the more angry I get at extended family for suggesting I put her in a nursing home a couple of weeks ago. I'm not an angry person, but I sometimes feel like I know so very much about mom and her disease that no one is listening to me. I even explained to them that sometimes when things are going badly, you will be prone to catastrophic thinking--believing that things will only get worse from here. But then you go to the doctor, or read about some simple thing that helps a lot, and the catastrophe passes. Again. This has happened more times than I can count over the past 8 years. But since they got one phone call from her after she fell, and she was very upset and crying, suddenly they are the experts and I should give up. ... I called her sister in law Sunday, but her brother answered the phone. He was very supportive and understanding, so apparently he didn't agree with his wife. Every time I think of my aunt telling me to talk to her neurologist alone about putting her in a nursing home (which I didn't do as it was so inappropriate it would have been tantamount to asking him if we should amputate her legs because they don't always work very well)...I'm not sure I've ever been this angry. I told her mom has been MUCH worse than this before, and I did discuss a nursing home with her doctors at that time (when she was spiraling after lyrica withdrawal 3 years ago), and they deflected my questions, making it clear they thought she would improve shortly and needed to be at home (and if we put her in a nursing home, the spiraling would continue, and likely worsen). ... I keep telling myself everyone in the extended family is getting older, and they are scared and concerned also, but I am literally an expert at her health at this point...and I feel like they sometimes just humor me by listening to my explanations of her drug side effects, Parkinson's symptoms, withdrawal symptoms, etc. ... I'm just feeling really angry right now and I never feel angry. Anyway... |
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Extended family for some reason feel they know more than the caregivers. I get angry too when it's suggested that I think about a nursing home for my hubby. After 40 years of being with him I'm taking care of him for as long as I'm able. I will just get more help as long as our money lasts. I feel like he would just wither away if he was put in a nursing home. I get the speech a lot about how I deserve a life and I should be able to get out and enjoy life. My life is with my hubby and I need him as difficult as it can be at times. You are the best son and your Mother is so lucky to have you to care for her. |
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Both my mom and dad are stubborn, and I am aware I can be stubborn also. But mom took care of 5 younger brothers when her dad died when she was 14 (she quit school and went to work to help her mother) while her older siblings just left. She took care of dad and his PTSD for 35+ years when PTSD was barely acknowledged, and his family completely denied it (why, I don't know, because I learned later that was the exact reason his mother left his father when he was a toddler--his father had "shell shock" from WWII). She raised me virtually alone (dad worked, but did little else). She took care of disabled children for several years at the end of her working life. And the salt in all those wounds is that she worked sorting and packing apples for 10+ years when I was a kid, and my early research into Parkinson's showed some correlation between exposure to pesticides and Parkinson's. So the money that paid for toys and clothes and food when I was a kid may have also been paid for with Parkinson's. I have no idea if that's the case, but the not knowing is just as bad. ... It's damned hard work sometimes, but I've pulled her back from the brink so many times over the last few years... And knowing this is probably the greatest thing I will ever do in my life... Being told to just toss her aside insults me just as much as it would her (I certainly didn't tell her what the family is mentioning nursing homes). I'm probably more insulted than she would be. And the research I've found is that Parkinson's patients don't often do very well in long term care, which I could have guessed myself for a list of reasons longer than my arm. ... The time may come when it's necessary, but this ain't it. Among the three of us we have plenty of money for in-home care if we need it again (right now, we don't). If dad ever needs care, it's free since he's rated 100% disabled through the VA. The house is almost paid off. And I've been extremely good with my money (learning from dad's mistakes), so that isn't a worry. ... Putting her in a nursing home would, in one fell swoop, destroy her health, our finances, our home, and our family. That's what makes me so angry. |