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they just don’t get it
I’m not trying to piss anybody off, and I know how much we need our caretakers be it your wife family or who ever but the one thing they don’t under stand is Parkinson’s is different everyday! there’s so much to learn and so many meds it just makes it impossible to have the answers. Even your Doctors look perplexed when you try to explain your latest endeavor or why you blacked out and fell. I know we all wish we didn’t have this disease but the only one that really knows what we experience is us and it gets aggravating when some one is telling you what you need to do to feel better when they have no idea what your dealing with. Oh well I guess I just needed to vent, so thanks for giving me that space, on with the journey. Good luck to all of us.
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5 Replies
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Hi Dick,
It can be frustrating to deal with changing symptoms and with people that don’t understand but give advice. These passed few years for me has been dealing with long COVID and a new diagnosis of Parkinson’s and between the two, I have been dealing with all different symptoms and no one day is alike. The one thing I have learned is that none of us truly understand what another person is dealing with unless we are experiencing the same thing whether that’s Parkinson’s, cancer, migraines, autoimmune just to name a few, and I’m constantly learning to be patient, listen, be empathetic to others and forgiving when others don’t understand. Doing this has helped relieve me of stress which is healthier for my Parkinson’s.
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Hi Dick, I appreciate your honesty and candour. It is so frustrating when people can’t understand your experience because they don’t share it. I hope folks who that have found helpful strategies for dealing with this will reply and share their experience and tips because I’m sure you’re not alone in feeling this way!
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Dick,
I think we all eventually become caregivers for our caregivers!
Best Regards
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Dick,
I always think of what I really want to say about an hour or two or sometimes a day or two after I first think about it. One of my particular Parkinson’s symptoms nowaday!
I meant by my first post is that for our loved ones our diagnosis is heartbreaking and they really struggle with figuring out what to do about it. For our acquaintances, not knowing the right thing to say or do is just par for the course – we’ve all been in that situation I suppose. But for our professional caregivers, Doctors, Nurses, etc., who are dedicating their lives to helping patients with diseases for which their is no cure, we must be especially understanding and aware.
For this to work over the rest of our lives, we will all eventually become caregivers to our caregivers.
Thanks,
Robert C
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I was getting really tired of my husband saying he felt the same when I complained of tiredness, dizziness, etc – then I realised that what he is trying to do is persuade himself that I’m really OK and all the symptoms are old age (I’m 80, he’s 84). He’s completely supportive in every way, and this isn’t a criticism, but I suppose he can’t face the thought of me steadily getting worse.
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