- Image by Cesar R. via Flickr
About 10 years ago, when my website was three years old, I had regular conversations with a few organizations devoted to helping family caregivers. These organizations struggled to reach family caregivers. To explain their struggle, the organizations decided that family caregivers don’t “self-identify;” i.e., they don’t call themselves “caregivers,” so they don’t look for caregiver services. Research dollars were spent to prove this conclusion.
This made me crazy. (Dollars spent on anything other than providing respite services for family caregivers makes me really crazy, but that’s for another blog post.)
These conversations led to meetings to discuss how to pool resources in order to create a new information website about transportation options for older adults, which in turn, would help family caregivers. During the meetings, on a regular basis, several key members of family caregiver organizations would talk about the problem—that family caregivers don’t self-identify therefore we can’t reach them.
This just made me crazy.
Finally, at one meeting, I raised my hand (you can take the classroom out of the Catholic school girl, but you can’t take the nun-driven manners) and said: “From my perspective, this looks like our marketing problem, not a problem caused by family caregivers. If we use the right words in our marketing materials and create a service that’s really useful and helpful, we’ll reach family caregivers.”
The roomful of professionals looked at me like I had a three-prong cane crawling out of my ear.
Fast forward to today.
I use Twitter regularly, it’s a terrific tool to reach and meet family caregivers. I often meet family caregivers through Twitter who self-identify; they write in their profile or in their timeline that they care for an aging relative (parents, grandparents, spouses). They also will write (sometimes to me) that they feel alone, isolated and helpless. Sometimes, they’ll say to me: I wish I knew about you ten years ago.
More telling, I find them. They’re not looking for me.
To me, this reinforces the idea that reaching family caregivers isn’t about whether or they not they self-identify as a family caregiver. It’s something else.
I think—and this is a new realization to me—that the experience causes individuals to withdraw into themselves. The sadness of the experience, the chaos, the “dirtiness” (i.e., the care recipient’s incontinence, dentures, hoarding) keeps family caregivers from talking, from reaching out. Odd things happen every day in a household that’s involved in caregiving. Occurrences so odd you think no one will believe or even comprehend. It’s a risk to talk about it. Talk about it to the wrong person (“Your mom does what??”) and, well, you fold deeper inside the shell.
You can say what you do (“I take care of my wife”), but it’s difficult for you to say what it’s like. And, that makes it hard to extend a hand to get help.
Or, do I just have another three-prong cane crawling out of my ear?
What do you think? Did caregiving cause you to withdraw? How did you open up? How did you learn about support and programs that can help?
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Tags: self-care
For 12 years my life has revolved around caring for my parents. First my dad, bless his heart, he’s been gone since 2003, and now my mom. I’ve lost connection to the outside world. When I have an opportunity to go somewhere I freak out. Perfect example, tomorrow I am supposed to travel 69 miles to a graduation party, I have someone to come and care for my mom while I am gone and I am sooo stressing out. I know I need time away but I start feeling guilty, I wonder what is gonna happen while I am away, it just drives me crazy. I am comfortable in my home, doing nothing, talking only to my friends and acquaintances I have made on line. The people I have become friends with here on line are my friends. They are my support system, and I look to them for my OUT. Its crazy.
I think with the next generation of caregivers people will be more willing to discuss the challenges more openly. Many of the older caregivers (spouses) I’ve worked with over the years don’t like to discuss what they think are personal matters. Their adult children on the other hand, are happy to talk.
I am the primary caregiver for my mom who has Alzheimer’s. Yes, I have become more withdrawn. Going out and doing anything out of the ordinary has become more of a chore than a pleasure. We can’t do anything spontaneous because we have to make sure that Mom will be okay. It’s also not easy finding people who can relate to what we are going through. Usually, when I need to talk it’s out of frustration. It is risky to open up to others who are not in the same situation for fear that you will sound uncaring. I did attend a support group meeting, and it was nice to be around others who could relate. I am much more open online than I am in person.
Hi Lillie–
I’m sorry I’m slow to reply to your comment… I hope all went okay today. We do have a series of articles (“Getting Out”) that offers tips on socializing. You can read them here: http://www.caregiving.com/read/getting-out/. Thanks so much sharing; always great to hear from you.
After holding my feelings in while a primary caregiver to my aunt who died of breast cancer, I decided that it was time to try and interact with caregivers and provide a venue for people to learn that there are others out there feeling the same way. More importantly, it is critical that you take care of yourself while being a caregiver; mentally, physically, and socially.
Linda´s last blog ..Caregiving nightmare
Hi Denise,
I especially liked this post of yours. I was logging on to offer a book I bought today that I think can be very helpful. Of course, being that it’s “Me,” there’s some funny oddball story with it! I had a day off, and I treated myself to relaxing by doing some errands and buying some reading – this book, some classics, and even one about the alleged Betty & Barney Hill alien abduction in the ’60s. So I went to my pile of books to pull the one I wanted to describe here, but instead of that I pulled from the pile the Hills book and started to type its title, “Captured!” Then I thought…well………….., that’s not really a far-off Freudian slip to describe what unanticipated caregiving can turn out to be like in our lives!?!
Seriously, though, the book I found today at Barnes & Noble is “The Everything Guide To Caring For Aging Parents,” Kathy Quan, AdamsMedia/F+W Media, 2009. It might be useful to such parental caregiver experiencers like me and others. There’s a lot of good information about dealing with the dying process, the healing stages, the resources, and what-not. And being the internet age, many of the links and references it cites are actually internet webpages, not just paper-based references.
It brought me back to you, you are right that many of us don’t look for help. What’s nice and good about you, admirable actually, is that you reach out to US and keep after us, checking in every so often and hoping/seeing if everything’s been ok. It makes us feel appreciated and not invisible, and to focus on wanting to think about and reach out to you similarly.
Thanks a lot for your reaching out and helping to me, too. The running message through all of this, including this book, is that we recognize we’re only human beings — the caregiven or their illness/injury doesn’t make us something different or superhuman that we weren’t previously — and we need to remember to not only take care of also ourselves, but to know at each moment we can only do the best that we can and that no situation — not just the good ones, but also the bad — will last forever. Therein lies, sometimes, Change’s silver lining in our lives..
I hope everybody has a good rest of this week!
Gary in Boston
Hi Gary–I love that word, Captured. I think you’ve inspired a future post.
One phrase I will tell myself when the storm clouds seem so dark is “This, too, shall pass.” It does help to strengthen and to keep me going.
Thanks for the book recommendation; I think we’ll add this our Book Club for one of our fall selections. It sounds terrific.
I love hearing from you. You have such an invigorating way about you, it’s very catchy. I’m so, so grateful that I know you. You do as much for me…