My FB post on Walk for the Cure

Lynne D

Here it is. Perhaps you can join me to raise awareness of caregivers’ plight by using social media to educate and apply pressure. It is shameful that dementia caregivers are so poorly supported in this country.

 Alzheimer’s Association: wonderful goal, but far off. Please read your site’s caregiver forums to see how we desperately struggle. Ever consider refocusing lobbying efforts to include caregiver support or for long-term care options that don’t impoverish most of us? As a matter of fact, how about instead of wasting effort walking, those who wanted to contribute could provide three hours of respite care for a caregiver? You could still make it a PR stunt and give away t-shirts, but may at the same time educate more effectively on the disease and its impacts.

ImMaggieMae

Excellent post, Lynne. You said it perfectly!

Just Bill

What a business model: Provide a place to send people with dementia and charge a ton of money. Or hire somebody to come to your house and pay a ton of money. Or suck it up buttercup and do it all yourself. I would love to drop her off someplace safe or have someone I trust come by and hang out for a few hours but that opportunity hasn't presented itself yet.

Paris20

YES! EXACTLY!

Lynne D

Bill, our local Area Agency on Aging has a respite care program (funded by a federal grant) that gives me (yes gives, free!) three hours of respite per week. It is not nearly enough, however I find it critical to my mental health. You might try your AAA.

Michael Ellenbogen

AAA does not care about  dementia.  It's just a job for them.

Buggsroo

Wonderful post. It is good to remind people just what is involved in caregiving and how exhausting it is. Love your post.

Just Bill

Thanks for the AAA tip Lynne. In all fairness I haven't really looked for any help yet. I've just battened up the hatches and prepared for the storm.

Joydean

Lynne, you are so right on, not that they will even reply, but thank you for posting it!

Bill_2001

Lynne, this is a FANTASTIC post! I am still in the workforce, so I have also become a bona-fide advocate for the needs of dementia CAREGIVERS.

Bravo!

The Alzheimer's Association walk is fine, but I do find myself thinking that some of that energy could really help CAREGIVERS. Raising money for research is cool, but how about raising more for respite for CAREGIVERS? I have been on a respite grant waiting list for 5 years. Nevermind already, gee whiz. I just pay for Adult Day Care myself. Half my salary? Oh well, sucks to be me. My "respite" happens while my dear wife is at Day Care, and I am at work.

We need real help!!!

Sorry if I sound cynical, but a cure will not be found during our ordeal. Do something to help CAREGIVERS now!

I am a full time employee and caregiver, and I regularly post on LinkedIn about the needs of caregivers, both in general and those of us still in the workforce. Adult Day Care is a lifesaver, but I realize everyone does not have access to it, and the hours/days it is available can really stifle a caregiver's career. Promotion requires travel or overtime? Forget it - the promotion goes to someone that is not a caregiver.

jmlarue

SPOT ON! Obamacare and Medicare might actually have some money to provide some care to our dementia population if only we'd stop allowing millions of undocumented immigrants from walking across our borders and immediately receiving benefits. Just a thought.