caregiving

‘Logan’ Makes Caregiving Heroic

/ <span class='p-author h-card'>Miriam Avery</span> / Leave a comment
We’re used to seeing superheroes balancing saving the world with protecting their beloved.  Logan is a superhero movie of a different stripe.  Wolverine is no longer a gonzo loner reluctantly adjusting to teamwork and love triangles.  He’s now an aging icon of the sandwich generation caregiver: painfully devoted to a father figure deep in cognitive decline, and suddenly saddled with a rebellious daughter figure with special needs.  He must protect them from a hostile world, while protecting the world from their formidable but poorly controlled gifts.

logan-credit-fox

Professor Xavier and Logan (Fox)

I cannot overstate how much I loved this movie.  While my ‘Arrival’ review sits in my drafts box struggling with profound revelations and weird grammar, this one was running through my head as the credits rolled.

Like nearly one in five adults in the U.S. Logan is providing unpaid care.  Like 40% of those caregivers, he’s a guy struggling with the clash of macho culture with the drive to relieve the suffering of someone he loves.  Like two-thirds of caregivers today, he’s working to support a household.  And like 17% of caregivers today, his health is poor and getting worse.  These are all 2015 numbers from the NAC/AARP report on Caregiving in the United States. The prevalence and impact of caregiving, and the number of folks like Professor X struggling with Alzheimers and other forms of dementia, are all projected to rise steeply between now and the movie’s setting in 2029.

It has enough gore to earn its hard R rating. But there are moments of such truth and tenderness I cried, a lot.  This is a movie for the coming decade.

 

Writing, death, and vat-grown kidneys

/ <span class='p-author h-card'>Miriam Avery</span> / Leave a comment
Hey, wasn’t I going to blog more and stuff?  Did somebody die or something?

Oh wait.  Actually, yes.

So my SB challenge and so many other things have been on hold for the past week.  I’m not done grieving, and won’t be for a good long while, but I do need to start writing again.  My kick in the pants came from the realization that it was Viv’s turn to do the regular blog post in our blogifying map forecasts series.

I started writing it and then I stopped.  I decided to share her words instead.  It still took me most of the day to track down links and proof and whatnot. It was both cathartic and helpful to tiptoe around the cognitive dissonance of writing about forecasts bathed in optimism bordering on hubris with ruminations on mortality rattling about my brain.

Here’s the post:

Replacement parts: “We can rebuild him, we have the technology”

Regenerative medicine will replace, restore, maintain, or enhance tissue and organ functions, dramatically improving patients’ health and quality of life, and potentially reducing the cost of their care. Tissue engineering will heal diabetic foot ulcers, reducing the need for amputations; organs grown in a lab will ease our dependence on donor transplants; and tendons, cartilage, and bone regrown with autologous cells will be used to repair injuries and joints. Advanced prosthetic devices and biomechatronic-based limb replacements will interface with the body’s nervous systems to give users a range of natural function and movement.

 When we first presented this forecast at a conference, our colleague Vivian told a story that illustrates the potential, and some possible pitfalls, of the growing capacities of regenerative medicine. It was part of a complicated dance of vignettes and exposition with Vivian, Bradley and myself that will remain one of my fondest memories of working here.

Viv presenting, by Rachel Hatch

Image by Rachel Hatch

Of course, when you get sick enough, you end up having to go to the doctor for help.

That’s what finally happened with Eric, who has Type 2 Diabetes.  He is a very successful 56 year old lawyer.  He has a history of working too much and not taking very good care of himself.  He was overweight, ate poorly, and didn’t track his blood sugar levels consistently.  As a result, he has had some serious complications from his illness.  Last year, he developed a foot ulcer that just wouldn’t heal.  The doctors had to amputate his foot.  His eyesight also deteriorated because of damage to his retina.  And his doctors have been warning him that he may need to go on dialysis.  Eric’s body is failing him.

Remember that TV show in the ’70’s?  The Six Million Dollar Man?  Do you remember the show’s tagline?  “We can rebuild him. We have the technology.”

Continue reading →

Emotional Networking (Crosspost)

/ <span class='p-author h-card'>Miriam Avery</span> / Leave a comment
Here’s the piece I wrote over the weekend for the Health Horizons blog.  I didn’t get to meet them, but on Friday I listened rapt and gawked at the webex of Emota.net, our neighbors in Palo Alto who are doing some seriously cool stuff. It’s on the HH and Future Now blogs HERE.

I just got a note in my email.  My aunt is busy with her own appointment, and nobody had yet volunteered to pick my uncle up from the VA hospital tomorrow, after he recovers from surgery.  Hey, it’s a Friday.  I can take off a little early to pick him up, and get him to my cousin’s place over the hill.  I respond to the email, volunteering. In a grocery store across town, my aunt’s phone chimes in her purse.  On the tray attached to my uncle’s hospital bed, a digital picture frame brightens, and my little bobble head avatar floats forward and let’s him know he can expect me when it’s time for him to check out.

I could live with this future. A couple years ago, the same arrangement would have taken at least a dozen stressed-out calls between my aunt and my mom, my mom and me, me and my five cousins, me and my aunt, and finally me at the VA with my mom, trying to find my uncle’s room in the biggest dead-cell zone in the valley.  At the end of the day, while everyone’s relieved when the surgery goes well, everyone has a headache.

This streamlined future of ambient, collaborative caregiving isn’t quite here yet, but today at IFTF we heard a fantastic talk from one of our neighbors, Emota.net. They’re bringing this future to life. They’ve coined their discipline “emotional networking, which complements existing telehealth solutions to address not just clinical health, but emotional and social aspects of elder care.” They’re building a platform that can operate across numerous devices, and facilitate the convergence of multiple communications media to bring different generations together.

The purpose is to distribute caregiving practices among a support network of family, friends and care professionals, while giving this network a tangible presence in a person’s everyday environment.  It takes “ambient co-presence” to a functional extreme, creating a gentle convergence of email, updating services, and virtual worlds. Image that you’re hanging out on your grandma’s kitchen table, tossing her hearts and flowers on a break while she reads your status updates (if she’s so inclined). And she bobs around in an app on your desktop, or phone, or tablet. If she needs help, you’ll get a notice, or if she’s really sick, her nurse will get a notice.  Otherwise, you’re just there: framed on the table with her other family, friends, caregivers.

This all sounded awfully familiar.

Continue reading →