The "secret society" of people caring for their parents

Jane Gross writes an engaging and sometimes heartbreaking blog on the New York Times about aging in America. She also wrote this post: http://query.nytimes.com/gst/fullpage.html?res=9D05E2DF143AF931A15754C0A9679C8B63 which talks about the "secret society" of people who are suddenly, dizzyingly immersed in their parents' lives in ways in which they never imagined. Care homes, finances, health, ambulances, arguing with doctors and insurance companies, cajoling and arguing and shouting and pleading and worrying with their own parents about decisions big and small.

In this post Jane says that when she meets someone in the same situation as her, "These conversations generally end the same way. 'We should form a support group,' one of us will say. 'Who has time?' says the other."

There is so much latent need in this group for connections and peer to peer support, for "I've been there" advice and stories, for recommendations about planning, care, local services, dealing with siblings, giving oneself a break. The internet poses an interesting potential solution to the "no time for a support group" phenomenon. It takes away the constraints of time and space and lets people connect on their own schedules, anonymously if that's what works for them.

Drop me a line at info (at) supportmyparent.com if you're interested in participating.

This...

...says a lot about what's wrong with modern "news". This, from the people who brought you the "terrorist fist jab" comment (for the record, it's called a "dap"). Glib, offensive, distortive, completely beside the point, and racist. As a woman, I think it's ridiculous. As a person of moderate intelligence, I think it's insulting (did they think my attention wouldn't be caught if they had simply headlined it "Obama tells press: 'Lay off my wife'"?). As someone who cares about race in America, I think we ought to be more pissed off, and more worried, about stunts like this one. Here's why I am pissed off:

1. As a society we are allowing news outlets to treat us like idiots who will only respond to the most base, inflammatory, or ridiculous headlines and stories. And over time, if we let them, these very stories will fill the airwaves and newspapers and internet sites, and will crowd out anything with complexity and fine-grained subtleties and respectfulness, and slowly, slowly, we will become dumber and less able to see or care about that complexity - a self-fulfilling cycle.

2. This is racist, racist, racist, in that nasty 21st century way that winks at you and says, "We're not racist, it's just a cultural reference, don't be so sensitive!" And when you point out that it's racist, it says "We weren't being racits - you must be racist for thinking it's racist". This has no place on television, where we and our children can see it, and where our neighbors around the world can see it and shake their heads at our "race problem". It has no place in our conversations about who will lead our country, nor about the spouses of the contenders for that job. It should be condemned and it should make us feel disgusted. I do not subscribe to rampant political correctness. This is not that. I draw a line at insidious, faux-playful racism that does nothing but reinforce ugly stereotypes under the guise of humor and catchy headlines.

Not that they give a damn, but you can email them to complain at americasnewsroom@foxnews.com.

what do you mean, where's the need?

I recently applied for a small amount of funding to support the website I'm building to support adult children who are in turn supporting their aging parents. The point of the site is to recognize and respond to the changing paradigm of aging in the West - no longer are adult children able to look after and support their parents 10, 20, 30 or more hours a week. They can't - they live far away, or they have careers (especially women, which is a big change to a generation ago), or they are raising children at the same time. Or maybe it's all three. They have totally different needs than those well-known "caregivers" for whom caregiving is a significant portion of their day or week. They need information fast. They need it at a distance. They need to be educated on how to even play their role, because they don't know - remember that each person is going through this for the first time. They tell me, often and with resignation, that the existing sources of information and support out there don't make any sense to them. They're fragmented and aimed at that previous generation of caregivers, and "they don't tell me how to solve this specific problem, now, from 500 miles away."

The funder came back with a single, pointed question: How do you know there is a need for this? My slightly bewildered answer was that there are no demographic studies out there about these people. There is no market research about their role in their parents' lives. In the UK, the most recent Census had a tick-box to self-identify as a "carer" (the UK term for what Americans call "caregiver"), but the people I talk to do not think of themselves as "carers", so they wouldn't appear there. The best studies out there on informal care for older people focus on government definitions of "carers"/"caregivers" - 15 or 20 hours per week or more.

My point, which I tried hard to make, was that the whole problem is that nobody is seeing these people as a group with definable needs. Yet they exist, they exist, THEY EXIST. I swear it, and if you ask someone who fits that description they will swear it (possibly in both senses of the word "swear") too.

And they have their own needs. And they make lots of big and small purchasing and life decisions for and with their parents. And they, not the traditional model of caregiving, are the fastest growing group of people who are supporting elderly people in the US and the UK. Do I have hard numbers to back this up? Heck no. But you do the triangulation: Society is aging = more elderly people. People are living longer = more elderly people. Numbers of adult children co-habitating or living less than 1 hour's drive from their elderly people are dropping = fewer steady caregivers for older people. That widening gap between those two factors of demand for informal care (the old folks) and supply of informal care (the adult children) is an entire group of people. They haven't washed their hands of their parents, they are just trying to support and manage from a distance, and while doing a million other things.

Spouses fill some of this need, especially as male mortality improves (leaving fewer female widows), but divorce rates negate some of that, so spouses are not going to fill nearly all of it.

I feel like I'm spending half of my time talking to people, pointing to something large and obvious directly in my field of vision, and their response is usually, "Oh, yeah, I guess I see what you're talking about". But I am not sure that they do. To me, this group has two things tattooed on its collective forehead:

1. NEED
2. OPPORTUNITY

Of course this is essentially the same thing. But I am not just talking about market opportunity. There is a real opportunity here to bring people together around a common experience, and to help them be the best they can at a role they very much want to be good at - supporting their parents in the final quarter of those parents' lives. By bringing them together we not only benefit from collective wisdom, so people don't have to start from scratch every time a parent is diagnosed with Alzheimer's, or left bereaved and isolated at home - we also bring together a group of savvy, smart, and motivated people who are not going to accept the bare minimum for their parents, or for themselves in 20 or 30 years' time. The advocacy and political potential of such a group is great, too.

So, if you have an opinion or insight on this, or if you're one of these people I've described, shoot me an email at jessica AT jessicashortall.com.

Thanks

JS. London.

Time to change the tone

It's exciting - and frustrating - and scary - to find and talk to people whose parents are old. Exciting because they have so much to say, and they naturally identify gaps in what's available to make their jobs easier. These are a new generation of adult children of older people - they are internet savvy, professional, used to advocating for their own health care and rights, busy, and very, very, very, very (did I mention very?) pragmatic.

It's frustrating because they all talk about the same needs and yet no one is meeting them. They want real information that clearly understands their issues and problems. They want it to be intuitive and easy for them to use, but also reliable and very trustworthy. This is their parents we're talking about after all - they are not going to just go with whatever fly by night dog and pony show they come across on Geocities.

Scary, because I'm pretty sure I'm going to have to try to do something, which is always scary. A friend said to me recently, "You sure like to bite off big mouthfuls." Fair enough. I get it. I am exploring a field that is crowded (albeit with, in my opinion, for this group of users, content and offerings that don't "get" them), highly attractive to big players with lots of resources, and fraught with emotion, l

There is so much out there about "caring" (if you're from the UK) and "caregiving" (if you're a Yankee like me), but the tone (not to mention the content) just doesn't work for the people I am talking to. People don't want hugs and pictures of smiling older people. They don't want hearts and logos of a stylized group of people holding hands. They don't want advice about how they should look after themselves, too, and plan ahead, and make lists, and try not to feel guilty. The way they really feel goes something like this:

1. Of course I feel guilty. Why is this even worth talking about?
2. Why would I want to belong to a caregiver support group to continue talking about something that already takes up so much time? When I am not caring for my aging parent, I would like to be
1. Doing my job
2. Taking care of my kids
3. Actually participating in my marriage
4. Drinking wine with friends
   
3. Telling me to find local sources of support for my parent is the most useless advice in the world. I don't even know what questions I should be asking. I have never in my life dealt with social services, so why should I know how to do that now? If I am looking for someone to check in on my Dad, should I be asking social services, the agency on aging, a local charity, a paid helper...?
4. I bloody well know my parent is declining. I don't really need help with seeing that. What I need is specific answers to my specific questions, about my specific situation.
   

Yet the way information and support is structured for these guys goes like this:

1. You probably feel guilty. Let's talk about that.
2. You should join a support group.
3. If your parent lives far away from you, make sure you do the following:
1. Find local sources of support
4. Watch for the following signs you parent is declining...

The gap between these two is amazing. It's as if nobody has asked the question: What is it that would be helpful to you?

I'm trying to ask the question now. If you have an answer, let me know.
JS.

SI Camp, rebellion, and Web0.0

Had a fantastic weekend at www.sicamp.org - basic concept was to throw a bunch of geeks and aspiring social entrepreneurs in a building for a weekend to see how far you can get in 48 hours toward using the web to create social value. 6 projects were selected aheadbof time, and they all looked interesting but you know how it is, when you have your own idea waking you up nights, you don't really want to focus on anything else.

So at lunch on saturday i had noticed that several geeks and other people were still floating and hadn't chosen a project to work on yet. I asked the organizer permission to be cheeky, stuck my hand up, and announced i was creating a 7th project and would love some help. I was approached by Angel, a spanish guy with mad Druple skills (i pretended i had heard of Druple before in my life) and we found some space to get working.

The best thing about working with Angel was that he wasn't just a coder; by talking me through the ideas he actually brought out new questions and ideas. Knowing no other way to 'build' a website i set to work with flip chart paper, scissors, markers, and blue tack, building giant mock ups that had components i could rearrnge and change. Once the front pageof the app was 'built', web 0.0 style, angel got me to walk through all the inputs and pages that a user would interact with to get to that stage. Then he started coding while i moved on to mocking up my paper app in photoshop to get some look and feel. Soon a stream of smart people started trickling through to see what the camp was calling the 'rebel' team. We got amazing support and critical thinking from a digital lawyer, marketing and user experience experts, html designers, and more. We worked past 10 pm saturday, and came back bright and early sunday, amidst a london snowstorm with flakes the size of half dollar coins - on my way in i saw a south east asian family taking pictures in the snow in what looked like their first time experiencing a real snowstom. We had until 2pm to ramp up to the pitching to judges.

At 2, we were told we were welcome to pitch but ineligible for the 2k prize money, due to our 'rebel' status. This elicited sympathetic groans from our competitors, which i thought was a great proof of the collaborative spirit of the weekend. Nonetheless the 5 minute pitch, in which i told a user story and walked through the mockups and various apps we had in mind, was great practice and we received really positive feedback from judges and competitors alike about the quality of the idea and presentation.

i've come away frm the weekend simultaneously exhausted and energized, with a stack of business cards and a much clearer picture of what i want to do, and how difficult but ultimately rewarding it will be to accomplish. Long story short, the event was an inspired idea executed well, and i feel ready to get a move on. Big thanks to sponsors NESTA, young foundation, and office of the 3rd sector, and the hard working team that ran the show.

spec'ing a website and other nightmares

i'm spending the weeknd at a web-based social innovation boot camp - see www.sicamp.org. Perfect opportunity to meet loads of geeks and show them my quite sad 10 page powerpoint website spec and ask them how on earth to get started. Great opportunity to learn and meet but what i'm finding most of all is how not-easy and nonlinear the process of spec'ing and launching a web-based service is.

Do you go quick and dirty to save money and time, spend a few K to get smething up, get reactions from people, and see if there's traction? Pros are quick and cheap, get out to users fast, don't do too much without their input. Con is that if it takes off in 6 months you will have to scrap and rebuild.

And then what kind of geek do you get? How do you know if s/he is any good? His input will have a major impact on the site. It feels like getting married. Or at least agreeing to go on a long road trip with a complete stranger and no air conditioning in the car. What if the other person litens only to meatloaf (the singer, not the meal) and sucks at map reading?

And all of this is supposed to take place sprinting alongside me doing user interviews, focus groups, and strategizing. And of course, i haveno proof until it's up and running that it's a good idea and well executed.

Back to camp now...
JS.

Test post from my phone

If this works, i am a tech genius (well, sort of).

Social change and the internets

Looks like I'm taking a dive back into start-up mode. How do I know this? There are lots of signs, including the facts that I'm working on a business plan, clearing out my schedule, and have gotten a bit of seed money to do so. But the real sign, the oh-shit-yikes-hooray sign, is that I haven't slept through a whole night in about a week. Love the ideas that keep you up at night. Now I just have to find time to (BTW I published this post and THEN realized I hadn't finished the sentence that precedes this parenthetical. Which in the words of Lisa Simpson, seems apt. APT! So I'm leaving it.)

If you're curious, oh 3 loyal readers, the basic idea is, like all ideas, not new. Our society is aging. The demographic chart looks like a dude with a spare tire for a waist. The big bump is still ahead of us. This affects old people, certainly. It affects us young people because the world we also happen to inhabit has always been defined by the Boomers, and now it will be defined by their aging - from automobile design to our ever-dwindling claim on social security benefits. Loads of stuff going on to address that aging process, as well as to support the aging themselves and those who care for them. But what about the rest of us....?

I guess that's all I'll say for now...never good at keeping secrets but I'll try. Anyway, this means that if this really does get going, this blog is going to be taken over, along with my brain and my life, by this idea. One that still involves social change, entrepreneurship, and impact, but which will probably be seen through the lens of what I am trying to do now. I'm a bit of a Web2.0 virgin so I'll probably write about that a bit too.
xJ.

technology and democracy

I'm having a 21st century moment. As I type this, I am sitting in my flat in London, listening in on a conference call with Barack Obama (no, I am not a political high-flyer, just a member of Democrats Abroad UK, who organised the call).

The connectivity that allows me to sit in London and listen live to a presidential candidate talk about his platform is part of the same world of technology that can connect communities, create social value, and drive some exciting forms of social enterprise. Just a couple of examples:
1. Vodafone's M-Pesa project (click), which could transform banking in Africa
2. Community building sites like Netmums (click) which allow traditional users of public and private services to reorganise the world in a way that makes sense to them
3. Organisations like Benetech and PATH, who spend their time thinking about how technology can make people's lives richer, and how it can address some of society's fundamental problems

Mr Obama is now talking about the work the US is going to have to do in the world which affects not just people living in other countries, but our own interests as well: building economies and schools, investing in infrastructure, providing people the basic tools to make their lives better, and finding alternatives to fossil fuels. That's partly the job of social entrepreneurs, so if anyone out there knows Senator Obama, tell him we're ready.