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Topic Just a couple of thoughts Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2016.01.02 16:38
A couple of subjects popping up here and trying to be diplomatic about these. There are no perfect caregivers anymore than there are perfect patients. Each patient has different needs and reactions so each caregiver faces different situations. Sometimes chores or caregiving present similar problems to overcome but not even then. Problems come up and there are no oh for this you do that answers. It's a life where you have to take the basic suggestion and build or adapt on the solutions (there's a word that doesn't fit P.D. or caregiving) We are constantly trying to adapt and just when you think you have it Parkinson's Disease throws a monkey wrench into the mix and says there now what are you going to do smarty? And it seems we're back to square one.

Then part of what's going on is yes Caregiving is a sh*ty job! If people or friends drop by they either talk around the patient or at times to the patient and it seems only to revolve around the patient and how they're doing. Rarely do you hear questions of how are you doing or how do you cope addressed to caregivers. Let alone what can I do to help? So at the end of the day caregivers are alone with their thoughts and seemingly insurmountable problems. So they come here to unload because no one can bare the burden just by themselves. Putting feelings and thoughts online can help, however the biggest problem with that is unlike talking where our bodies and voice convey feelings and emotions typing doesn't sadly and the reader depending upon where they are emotionally doesn't get the feeling and puts their feeling or interpretation to the post.

As was mentioned in another post things got pretty bad a few years ago here and it kind of fed upon itself with negativity and cruel statements by some about their PWP Then it started to grow. I worry about another go round like that but as the poster said I (myself included) doen't sense that now. Many times when unloading and venting, trying to write it out and then go on again tomorrow we knowing what we want to say omit the biggie. As an example of what I'm trying to say would be .....all the extra laundry and picking up I hate it! simple enough and true statement. But to someone else it may read I hate caregiving or I hate my PWP. That's not what the typer said they meant I hate all the extra tasks daily I hate Parkinson's Disease!! I know what was meant, they know what they meant, you know what they meant but someone else might think differently. I don't know I'm just guessing here on this. Because we're all fighting a losing battle and trying to do the best we can. And yes it would lighten everyones load if our Caregivers were asked how they are holding up from time to time and couple that with the person asking actually taking time to pay attention to the answer instead of asking then not listening. Or a what can I do to help? So we're all we've got for now letters typed on a lit screen, feelings and thoughts stretched across space to each another. Lets try to remember when someone says I hate it to place P.D. for it, they're venting and thoughts and feelings are pouring out faster than they can type them. Be easy on ourselves and others. And how are you holding up? Anything I can do to help? Take care, best of luck and hang in there

By jcoff012 On 2016.01.02 19:04
Good response, Al. I guess my original post hit a nerve with some on this board. If it came across as accusatory, it wasn't. Far from it. It was a way to NOT be that, but rather to show others that sometimes the posts seem very sad to some of us.

As you said, a few years back there were some VERY mean-spirited folks here who were ready to lash out...and did. Also, as you and Michelle explained, the boards now are NOT mean-spirited, but rather are helpful and even when we disagree, we know the other caregiver should not "take" ANY comments personally.

In that vein, if it is acceptable to vent, then it must be acceptable to ask the hard questions. So, again, knowing my original post may have not been written as intended, thank you, Al, and others, for your comments and clarification. In no uncertain way, would I negate ANY commentor. Just ,sometimes perceptions get skewed late at night...alone and in the dark.


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