Do I Matter if I’m a Caregiver?
Family caregivers and professionals matter. I thought I mattered while I was a full-time caregiver, though not everyone agreed.
And despite the thousands of caregiver-authored books (mine included) and hundreds of speeches given each year (including mine), we remain mostly in the shadows.
Even celebrities diagnosed with dementia and their caregivers seem to fall by the wayside until they do something that captures the mainstream market’s fickle fancy.
The river of life is fast moving and all too often caregivers are caught in the flow without a life jacket.
For these reasons, I wonder if we need to do something more–like a massive recognition campaign featuring the guardians of people who cannot care for themselves–caregivers.
Someday, you and I might require care.
- Would you want to ensure your caregiver has a livable wage?
- Would you want to ensure your caregiver knows enough about this insidious disease called dementia that claims millions of innocent lives each year?
- Would you want to know that your family won’t be left among the ruins trying to provide you with quality care?
We need to work together.
Unfortunately, ours is one of the leading fields (besides farming) that practices silo management. Each organization wants to make headway alone. Meanwhile we advise families to seek help. How can we in good conscience provide this advice then shun the cooperative spirit of collaboration in our own efforts?
Researchers are scrambling to discover a cure or even ways to prevent dementia. The many diseases that lead to dementia such as Alzheimer’s, Lewy body, vascular, Parkinson’s, and dementia’s rarer causes make it harder than salmon trying to swim upstream blocked by a dam!
It’s all about fractions.
The way I see it, if researchers were to partner with a fraction of the hundred million-plus caregivers around the world, they’d extend their research outside of the laboratory and onto the front lines.
If caregivers were to receive a fraction of the billions spent on research and funding in return for reporting on what works (and doesn’t), we could amass a wealth of knowledge with real-time data from the front lines.
Amidst the millions and billions in funding, something gets lost–the glue that holds everything together–the caregiver. Click on the images to read caregivers’ stories from around the world.
What do you think? Is starting an “I’m a Caregiver and I Matter” campaign too lofty a goal? If not, what’s our first step? Please take a moment to share your thoughts below because: You’re a Caregiver and YOU Matter.
Oh Brenda, such a wonderful idea. My mother has advanced dementia and is in a nursing home. I have an older brother who will help when I ask, however, I am the primary person who takes care of her laundry, her trips to the hospital, her bills to the nursing home and any other task that comes along. I sometimes feel as if I am on a desert island all alone. I am always by myself, at the hospital, visiting, and any other thing that comes along. I would love to think that I matter to someone.
YOU do Matter, Gail! Remember that. There are millions of caregivers who agree. We just need to bring our voices together so they’re loud enough not to ignore.
You have my full support!
YESSSSS, thank YOU, Carmen.
Now that I’ve finally convinced myself that “I’m a Caregiver and I Matter” (which took far too long to do, I confess), I think the next challenge is to convince so many other caregivers around the world of the same thing! The goal is not too lofty, Brenda! Not at all! Being out on the front lines, I’ve found that not only are Caregivers not given the recognition and support they so greatly deserve, but often times, they don’t even REALIZE that they ARE Caregivers! I’ll do my darnedest to pass the message along to the people I work with. And I’ll try my hardest to become better friends with this beast known as “Social Media.” The more we connect with each other, the less alone we will feel, not to mention the fact that we can collaborate more easily to increase public awareness of a devastating disease that is only going to multiply in massive numbers in the years to come. I’m with you, Brenda!
WOW, we’re gaining some traction here–Lynette Juul, Martha Stettinius, Myka (aka Care Hero Creator), Don McCormick and other via other social media like Dr. Richard Taylor. He suggested holding a brainstorming session. I think that’s a good idea. Will put something together as soon as our newest book (STUFFology 101: Get Your Mind Out of the Clutter) is out of our hands and ready for publication. In a few weeks.
I think it’s an excellent idea, Brenda!
Great, Martha! Depending on others’ replies via social media, too, you, Martha, Myka, and a few more may have to have an initial brainstorming session.
Caregiving knowledge is too scattered and some of the resources you do find are too technical or not practical. I’ve been in some form of healthcare with direct patient care for over ten years but none of it seemed to matter once Dad was diagnosed with brain cancer and I became his caregiver overnight. I was floored by the amount of anxiety and overwhelm I felt and I had a network of “experts” to rely on that I had connected with over last ten years. There is no way I can imagine what others go through… I was just astounded when I realized how difficult it was to find good, practical advice. So, once Dad stabilized I knew I needed to do something to give back. I am just starting a free video series to share what I have learned, in a small effort to give back, but think what we could do if we started a movement all of us together! I say count me in and where do I sign up!
Myka, that is one awesome video at your site …FUN. I’m still smiling.
We need to talk. Send me an email.
OH Brenda, if we received compensation for the knowledge we have! Wow, we would we be rich. Well, I have to feel that I do have compensation. In the last 9 years, I have done research upon research. My compensation is that I sincerely feel that I have done a great job in keeping my wife at home with me. With dementia, being in a home is not the best thing for your loved one. Now my Marie is entering into the testing state to be in the trial for what the doctors at Georgetown hope will be the drug to cure it all. Or at least treat it. I am blessed to have people like you, Staci, and daughter and son here for me. I have a sister that goes all out to help when she has her own issues.
Thank YOU, Don for sharing such a heartfelt passion-filled reply. And thank you for the kudos to all of us in your life who you feel have been helpful along your and Marie’s road with dementia.