Helping Those Who Care for Parkinson's Patients
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Hi - VioletV here. I have not been around very much, but I always think of myParkinsons.org as the lifeline that kept me afloat when my husband with Parkinson's was alive. I wrote this email to send out to my readers, but I realized that I wanted to share this with you. You may have seen this report elsewhere, but in case you have not. Here is what I sent; "A new report has just come out, with the statistics that support what you and I have known for ages -- Parkinson's caregiving is unique, when compared to other forms of caregiving. I didn't want to wait to study this long document completely before telling you the thing you've already tried to get people to understand. What you are doing is incredibly and uniquely hard. Cue a collective Homer Simpson-style 'Duh!! I found it somehow satisfying that these academics and other researchers say it this way: "Compared to caregivers of individuals with other conditions, PD caregivers face a heightened level of responsibility and strain." Believe me - I'm not saying that other caregivers don't struggle. There isn't enough support for any of us. But the statistics in this paper tell us that the caregiver burden (that's what the researchers call it) is much greater for caregivers of PD. In fact, the report uses the word "unique" eleven times in fifty-eight pages. Could this mean that finally doctors and others will start to see the importance of PD caregivers? Who knows? Given that the National Institute of Health tells us that it can take as long as 17 years for new knowledge to translate into real practice in the medical setting, we shouldn't stop advocating. Our PWPs' doctors need to recognize that what we PD caregivers do is really hard and really important. I'll be reading this report quite carefully, to learn what it tells others about the truth of our lives, and how we can use this to speed up the day-to-day doctors' understanding of the PD caregiver's role. Many hugs to you who are bearing this burden -- one that is so often carried with so much love." VV The report was published under the auspices of The National Alliance for Caregiving, the Michael J Fox Foundation and Arcdadia University. |
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Thank You for sharing that. I too will take a look. And thank you for all your hard work. I hope you feel very proud of yourself. Everything you have shared has been very helpful. I've been caretaking for CK for 6 months now and I've truly begun to openheartedly care for him. Recently, though, I can't help but wonder how soon the next new normal will be here. Much Gratitude HeartOpen |
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I've been thinking about this since the doctor tried mom on Donepezil a few weeks ago. If anything, I try hard to push through initial side effects in hope that they clear up. But at a certain point the thing that makes me realize it isn't working is my exhaustion. Her off time increased and was worse (crying, etc), her calls to me at work increased, her requests for the caregiver to stay with her until I got home became daily, we started arguing over everything in the evening because she needed help to stand up ever single time she had to go to the bathroom (and it was MANY times), and finally she started getting dizzy in the morning. ... When I messaged the doctor, she said to try to move the pill from 11am to 11pm. For a hot second, I considered that. But she was worse all day, and dizzy at 7am when she hadn't taken the pill since the day before at 11am. I'm not going entirely off my "feelings", but my experience over 15 years of caregiving tends to be pretty accurate. So I just gave up on that pill. ... I'm also getting somewhat annoyed (or tired, or depressed about...) the doctor always timing these meds, or med changes, on my vacation time so I can watch her. I'm already exhausted, and it sometimes feels like we're filling up my extra time with more stress. I'm becoming more and more aware that I have to take care of myself if I have any hope of taking care of her. |