I’m collecting examples of peer health playbooks: the how-to guides that patients and caregivers write so that people following their path won’t stumble into the same pitfalls. If you know of one that is not listed below, please tell me about it in the comments.
- I AM ALS put together a step-by-step playbook of how to approach empowering and mobilizing patient-led organizing efforts.
- Genetic Alliance offers an Advocacy ATLAS (Accessible Tools for Leadership and Advocacy Success).
- Dana Lewis wrote Automated Insulin Delivery as a guide for people considering Do-It-Yourself or other Artificial Pancreas System technology.
- Melissa Hogan and Meghan Marsac wrote AFRAID OF THE DOCTOR: Every Parent’s Guide to Preventing and Managing Medical Trauma.
- Carmen Bombeke, a mother with lived experience, wrote a guide to navigating mental health care and substance use disorder insurance coverage.
- Katherine Onk wrote a glioblastoma playbook when she Googled that phrase and found nothing.
- Lianne Mandelbaum wrote a guide to traveling with food allergies.
- The Caregiver Action Network has a Family Caregiver Toolbox of guides.
- ImproveCareNow lists toolkits and guides to living with inflammatory bowel disease, all written by their Patient Advisory Council.
This is a wide range of topics and issues but I know there are even more out there. I’d love to learn more about what people have created!
Image: A dozen bright yellow sunflowers blooming on a sunny day — one has a bee on it (captured by me last summer when my crop was much bigger than this year).
Tech-enhanced Life has articles and focus groups about using technology to improve aging symptoms https://www.techenhancedlife.com/
Thank you, Ileana! I love the way they describe their work, as in this section of the guide to medication management:
“…our Longevity Explorers have had a number of discussions of the whole topic of managing medication, and as a result we have developed some intriguing insights into how older adults manage their medications today, what they think their challenges are in this context, and what they do and do not see as “problems to be fixed.”
Too often we see people solving problems that actual users don’t think are the priority.
From the Canadian Arthritis Patient Alliance (@CAPA_Arthritis on Twitter):
Pregnancy and Parenting with Arthritis: A Resource for Patients by Patients
http://arthritispatient.ca/pregnancy-and-parenting-with-arthritis-a-resource-for-patients-by-patients/
This resource has been co-developed by @CAPA_Arthritis and @MamasForward (which provides resources, support, and encouragement for moms and moms-to-be with chronic illness).
Another tip shared on Twitter, this time by @alsadvocacy:
Developed and maintained by caregivers @nadia_sethi and @cadawno to help people find clinical trials:
https://iamals.org/get-help/als-signal-clinical-research-dashboard/
Thanks, all — keep the tips and ideas coming!
Geri Lynn Baumblatt shared:
The unexpected journey of caring : the transformation from loved one to caregiver, by Donna Thomson and Zachary White
https://iucat.iu.edu/iusb/18388149
She added: “Since family caregivers often don’t self-identify, it’s unlikely they’ll pick up a playbook when it can help. Also fyi: The Power of Peers: Creating Belief“
We have two booklets which you may be interested in: ‘Creating a Peer Support Group’ and ‘Taking Part in a Heart Support peer Group’. I would be happy to send them to you to share.
Thank you! I appreciate the offer — especially from someone who lives across the globe in Australia — but no, that’s OK.
I see on your website that your organization is starting your first online support group. If you have insights or lessons to share about how you are planning that transition, I’d be grateful to hear about them.
Providing Peer Support to Peer Supporters briefly highlights a few of the tips that can be helpful to those who are passionate about providing peer support services to those who are suffering as they once suffered. From a perspective outside the box of the traditional cookie-cutter view of recovery, realizing that every day recovery and resilience looks different for each of us. This realization frees us to live as our best selves- regardless of how that may have initially looked to us or others.
Thank you, Charisse! Unfortunately the link you included in your comment didn’t work. Can you try to paste it in again?
Hooray! Charisse and I were able to connect and she shared this link:
Providing Peer Support To Peer Supporters
https://bamarecoverygirl77.wixsite.com/website/post/providing-peer-support-to-peer-supporters
The revised edition of my book, The Patient’s Checklist: 10 Simple Hospital Checklists to Keep You Safe, Sane and Organized, was published 9/2020. It’s original inspiration was my father’s disastrous experience and it’s tragic consequences with the fragmentary care of a top US hospital. I didn’t want any other patients and their care partners to go through what happened to us. The book is a simple toolkit or guidebook to help patients and those who love them better manage and monitor complex care to protect patient safety.
Thank you, Elizabeth!
Everyone: Here is a link to her site, where you can learn more (and buy the book!)
I’ve found myself suddenly on the learning curve about long-term care and end-of-life planning for two parents simultaneously. I would love a playbook about navigating Medicare for married couples who want to stay at home, and who both need care and end-of-life planning. Does such a thing exist?
Ideally I’m looking for care and planning that is integrated or provided by the same team, even though his needs are orthopedic and physical and her needs are memory and mental health related.
A playbook for memory care itself would be really helpful. Do you know of any? Or folks I should follow on twitter or elsewhere?
Thanks for writing this post. I remember seeing it when you originally posted it, and it’s one of the first resources I came looking for when our situation suddenly deteriorated.
Amy, I’m sorry about your parents’ deteriorating situation.
I’m going to put out the call on Twitter to see if people have other resources to share, but here’s what comes to mind for me:
Aging Care is a website that lists resources for paying for care, elder law, housing options, caregiver support and more. Their newsletter is a must-read for me, personally. See: https://www.agingcare.com
If you don’t yet have a copy of The Caregiver’s Encyclopedia, by Muriel Gillick, MD, I recommend getting one. It’s the What to Expect for elders: https://jhupbooks.press.jhu.edu/title/caregivers-encyclopedia
Dr. Gillick’s blog is also wonderful, btw: Life in the End Zone http://blog.drmurielgillick.com
I created this Wakelet collection of links when another friend was facing difficult choices about how to care for her mother:
https://wakelet.com/wake/40b26327-01a9-4451-9815-cc25bb01e845
Something that I learned from that situation: Ask for a palliative care consult right away. Ask what the prognosis is. Nobody told my friend that her mother was dying! The clinicians used euphemisms and/or the family did not understand. As I wrote in the Wakelet, “I’m not sure if the family is ready to consider this an ‘end of life’ discussion…” Guess what? Death doesn’t care if you are ready or not. My friends put their actively dying loved one in a rehab facility instead of a hospice, where her death could have been managed better.
Now for some wholly personal advice, based on my own experiences with elder care.
If your parents want to stay home, quickly find a local home health aide agency. How? Call local hospitals and ask the social workers for recommendations — and reasons why they recommend that agency. Network with neighbors and friends. After helping care for my dad to the end of his life I posted to my high school class Facebook group with my recommendations about a local SNF/hospice and a home health aide agency. I know that’s helped a few of my classmates.
Once you connect with an agency, talk with them about your parents’ needs, your needs, your budget, everything. Good agencies will have seen all of this before and will help you navigate what’s coming. I have tears in my eyes thinking about the agency who helped my family with two “end zone” situations (to use Gillick’s phrase).
Another lesson I learned the hard way: Even an excellent home health aide agency has trouble staffing weekends. This is when you want to be there or deputize someone you trust to be there.
Here are some posts I’ve written that might be useful (as always, read the comments đŸ™‚
Project management for caregivers
https://susannahfox.com/2020/03/01/project-management-for-caregivers/
Lessons learned about hospice care
https://susannahfox.com/2020/10/19/hospice-lessons/
A good death
https://susannahfox.com/2018/01/19/a-good-death/
Now, take a deep breath and know that you’ve got this. There’s a line in one of the articles about caring for elder parents that has comforted me. I’ll find the exact quote but the gist is: You will know what to do. You will hear a tone in your parent’s voice that warns you if something has changed and they need you. And you will handle it.
Here’s the quote, from Abigail Zuger, MD’s review of the book, My Mother, Your Mother: Embracing “Slow Medicine,” the Compassionate Approach to Caring for Your Aging Loved Ones, by Dennis Mccullough:
“The pace of care should be slowed to a crawl. For doctors, that means starting medications at low doses and increasing them gradually. For children, that means learning not to panic and yell for an ambulance on every bad day. And for a good overall picture of a parent’s condition, a child is well advised to ignore the usual medical and nursing jargon and to focus instead on the sound of the parent’s own voice. ‘No one,’ Dr. McCullough says, ‘can be a bigger expert on a parent’s voice than a former teenager trained in the same household.'”
I love that last line so much — and it reminds me to model slow medicine and joyful caregiving for my current teenagers :))))
Also: Thanks to Nick Adkins I was reminded to recommend you follow Joe Angelelli (@GeroAmericano) on Twitter. And from HIS feed, I remembered the wonderful Bill Thomas.
I can’t say enough good things about Center for Medicare Advocacy. They have valuable professional expertise (including attorneys who don’t hesitate to right a wrong).
Their website has a lot of material on Medicare home care benefits.
https://medicareadvocacy.org/issue-brief-medicare-home-health-coverage-reality-conflicts-with-the-law/
Too often home care agencies say, “That’s not covered,” when the real answer is, “We don’t want to do that.” It’s a complicated, frustrating situation to get Medicare home care benefits delivered, but they can make a significant difference in the quality of life for both the person with a serious condition and the family caregiver.
https://medicareadvocacy.org is my go-to place for matters of Medicare coverages and eligibility.
Hosiped is a caregiving website where hospice and aged adult caregivers give their opinion on caregiving, the challenges that they go through every day and review products that they have used.
Since my blog is my outboard memory, here is a wonderful playbook-like service that Lisa Suennen shared with me:
Undivided
It’s for parents raising children with disabilities. Here’s a quote from the CEO, Jason Lehmbeck:
“We know firsthand that it doesn’t just take a village to raise a child. It takes a supportive team of professionals who can help you advocate for the resources your child needs, experts to help you navigate the complicated bureaucracy of public benefits, and other parents to share what they’ve learned and offer support when times get tough. We launched this company because we’ve learned that we’re stronger when we work together.”