JOAN’S BLOG – THURSDAY, JULY 17, 2008 – “THE FEARLESS CAREGIVER CONFERENCE”

 Joan from The Alzheimer Spouse website and Patrick Toal from Caregiver Stress Management Cruises at the “Fearless Caregiver Conference” in Boynton Beach, FL, July 16, 2008

I always try to bring you some worthwhile information from whatever conference I attend. These “Fearless Caregiver” conferences are not Alzheimer specific; they are geared toward ALL caregivers, and are run by Gary Barg, from Today’s Caregiver Magazine.

Although we had to leave early, and could not attend the afternoon session, the morning session was a question and answer panel format. Today’s panelists were experts in their fields – insurance, mental health, and respite care.

Everyone’s perspective on what they see and hear is different from anyone else’s, so I expect there are many who attended today’s conference who gleaned a different message from it than I. But what came through loud and clear to me from the audience of caregivers was FRUSTRATION. Frustration that there were no resources for their particular situation. And the solution was one we have discussed here on this website – advocacy and grass roots initiatives.

The only way to get the services you need is to be a PEST. Advocate may be a more appropriate word, but PEST is the more accurate one. In the case of AD, I happen to be thinking in terms of EOAD (Early Onset Alzheimer’s Disease). On this site, we have often discussed the plight of EOAD patients who are too young to qualify for drug trials and Medicare, and have no age-appropriate Day Care Centers. Some of our members – Tony has been the most vocal – have put themselves on the front lines to advocate, advocate, advocate for what they need.

Others, like myself, and believe me, I am not the only one,  have gone the grass roots initiative path, and started our own resource when what we needed was not available.

Whether we like it or not, today’s society is such that we have to advocate for ourselves and our loved ones for everything. We cannot sit quietly and wait (Months? Years?) for our doctors to suggest a new medication or treatment. We have to do the research and bring it to the physician’s attention.

We have to tell caregiver organizations and our legislators (over and over and over again and again and again) what we need. And if it is something we can start ourselves, we have to start it ourselves. One of our members is a retired physician who has begun to give speeches to doctors in an effort to educate them about Alzheimer’s Disease and its effect on the caregiver.

So that is what I took away from my morning at the Fearless Caregiver Conference – Be fearless and stand up for what you need! 

And join us on the February cruise for some real stress relief.

Feedback to joan@thealzheimerspouse.com

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