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Topic Wow, you call this support????? Go to previous topic Go to next topic Go to higher level

By chroop67 On 2012.01.05 11:04
OK first of all this is a CAREGIVER support forum. I appreciate the view from the 'other' side but thats not why I am here. I need to know that others are experiencing the same thing, its true 'misery DOES love company'. I understand the complexities of this disease, I am educated as to the realities of it but I am here for support plain and simple. If we bitch and complain about the same things over and over, oh well at least we have a place for it, or so I thought.
I am not a martyr nor do I aspire to be one. I am human not a hero and I am a caregiver but I will not sacrifice my life for this disease. one life stolen is ENOUGH!!!! It doesn't mean that I don't sacirfice but I choose to retain healthy boundaries.
My guilt beats me up everyday I don't need to be beat up here.
The very fact that we post here should speak to the truth that we care, we just need a shoulder to lean on.

By karolinakitty On 2012.01.05 11:15
But... you missed my point..
#1 I AM a caregiver.....
#2 one who care gives but at the same time wants to help teach to deal with this disease
#3 It was mentioned in another post that i left because of attention getting/giving whatever and that was not true....

I have supported and gave my all to this forum for 4 years...uplifted and encouraged...
but now it has burnt me out repeating and repeating and repeating...

if you feel offended because of it than that is on you... i personally just wanted my TRUTH to be known as to why i left..
plain and simple

By karolinakitty On 2012.01.05 11:21
And YES....Educate is part of this site and always has been as it says on the home page I copied below:

We've developed our Web site specifically for people who are current or future caregivers to patients with Parkinson's disease.

We know it is not easy to accept the diagnosis of a chronic illness that relentlessly progresses. Questions flood your mind. Do you die of Parkinson's? What is the prognosis? How long can the patient continue to work? He has changed so much over the past year or two. What took us so long to recognize that something was wrong? Will changes in behavior continue to increase? Crowding these questions are silent pleas for help. The spectre of what lies ahead seems so frightening!

Find out how to help...
We trust you'll find this site an extremely valuable source of information and references that will help you understand the nature of the disease. Just as important, we know this site will help you better understand how you can be at your most effective when providing care for your Parkinson's patient. You are just a click away from years of experience and insightful commentary on providing care for the Parkinson's disease patient.

Exploring this site, you will find that there is an extensive support network available to you; that Parkinson's is most often an extremely manageable disease; and that with each passing day, the prospect for ever more effective and long-lasting treatments becomes more certain.

Thanks again for visiting the site - and let us know what you think, so we can continuously improve our efforts in assisting you and your fellow Parkinson's caregivers!

By Reflection On 2012.01.05 18:26
The test of a first-rate intelligence is the ability to hold two opposed ideas in the mind at the same time, and still retain the ability to function.
F. Scott Fitzgerald, "The Crack-Up" (1936)

Friends.
I hope.
Deep breath, one and all.

Support, yes.
Education, yes.
They aren't opposed.

We're all different, and PD is different in our loved ones. As the saying goes, if you've seen one case of PD, you've seen one case of PD.

Our histories with our loved ones is also very different, as are our roles.

To karolinakitty, "Caregiving is all about sacrifices...to our lives, our health and our security.....it is about giving up all and I mean all...to take care of someone we truly love"

I respect her devotion. But I do not feel that any one definition of "caregiving", or "dementia", or anything will fit everyone. I am in the group that needs some boundaries, and setting some of those boundaries sooner, tighter would have been better for every member of my family, including my loved one with PD.

If something is helpful to you, or if you think you can be helpful, this forum lets you put it out there. And if you don't find something helpful, sometimes the best thing to do is ignore it.

I have a problem with posts that insist on their way or the highway. I have a problem with posts that aren't supportive, or that try to impose their own standards on everyone else on the forum. We can figure out what's helpful to us, what's not.

This forum helped me understand a great deal about PD, about how it affects our loved ones with PD, the rest of our families, ourselves.

I too have posted on dementia - see, e.g.,
http://www.myparkinsons.org/cgi-bin/forum/topic_show.pl?id=2764

Where practical, I've tried to post in a way that those for whom the post resonated can find further information on a topic by providing URL's to the sources of some of the information I reference, to make it easier for those interested to make up their own minds on a subject.

I don't believe that we are likely to exhaust any topic, or, for that matter, agree on it - much less the highly charged topic of the cognitive / behaviorial / mood impacts of PD. We're all at different stages, our loved ones and our relations with them differ too much, membership in the forum changes, what at one point wasn't something we recognized may become the most urgent issue we're trying to deal with.

I believe the issues of the cognitive / behavioral/ mood impacts of PD and PD meds is one of the most potentially helpful issues on this forum, since neurologists tend to downplay it. To be helpful, it is not necessary for all to agree. But being respectful and supportive, or, if you can't be, refraining from posting, might help keep the forum the suppotive, informative, incredibly valuable resource I've found it.

By packerman On 2012.01.06 09:52
agreed.

By housemouse On 2012.01.06 22:23
My husband and I are presently living in a "senior community", which has saved us money, and my energy, so I can focus on caring for my husband, not distracted by the errands, daily living tasks, and all the other mundane details of modern life.

It is so important to understand that no two Parkinson's patients have the same symptoms/expression of the disease.

Because of the last two crises in my beloved's illness, I was advised to get some counseling, and I can't tell you all how much it has helped me understand the difference between what I can do for him, and what I can't do.

I was reminded that there is a downside to my endless sacrifice to help him, and that is suppressed frustration, resentment, and burn-out. I was that close to burn-out in these past few weeks.

I am being advised to do what I can, but seek help when I need it, for there is a difference between the role of wife and the role of care-giver.

I once wanted to think of myself as the noble one, who would do all for her beloved, but now I realize that this is unrealistic.

If I do not take care of myself, I will not be able to take good care of my husband, and make good decisions on his behalf as this disease progresses.

I now feel so much less anxious and exhausted, and am able to be more objective in facing the difficulties we are enduring.

Just offering this up for everyone's consideration. There is no "right" way to be a caregiver, because we are all facing different symptoms, and what works well for one couple may not be realistic for another.

By parkinit On 2012.01.07 20:42
Housemouse - thanks for sharing.
Reflection - great wisdom in your post as well.


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