We usually don’t get to choose when to become caregivers. A crisis hits and we are dropped into a maze populated by scary monsters, like family conflict or financial ruin, and no guides.
This happened to a friend of mine recently and, when her loved one’s situation stabilized, I sent her 3 things:
1. A copy of A Beginner’s Guide to the End, by BJ Miller and Shoshana Berger. I have loaned or gifted this book a dozen times since I got my copy.
2. Atlas of Care’s CareMap, created by Rajiv Mehta, is a wonderful way to not only document all the helpers in your and your loved ones’ lives, but also to see if there are gaps to fill in advance of the next crisis.
When I’ve created CareMaps with people, one byproduct is a list of doctors, vendors, lawyers, friends, neighbors, family members, etc. The next step is to tell key people that they are on someone’s CareMap and share your contact information with them. Getting all those phone numbers in one place was MASSIVELY helpful when my loved one went over the cancer waterfall. His next-door neighbor called my mom, she called me, and I had all the numbers I needed to trigger the help we needed.
3. Engage with Grace – five questions about the end of life. As I wrote to my friend, “They are conversation starters and may lead to you find out, for example, that she has a health care proxy — or has NOT yet filled it out and you can ask that you be the designated person.”
Later, I’ll share:
The Archangels Caregiver Intensity Index, a tool for checking in on yourself, to see if you are “in the red” and should reach out for help.
What would you add? Please share in the comments below.
Image: Fields of Gold, by Heath Cajandig on Flickr. Sunflowers turn toward the light and share nutrients with each other — an analogy for peer-to-peer health care.
Maneesh Juneja says
I would add that new caregivers should constantly remind themselves to make time for self care and self compassion, every day. It’s very easy to give so much, that you get burnt out or lose your sense of self, and as selfish as it might sound, investing in self care on a daily basis will mean you have enough emotional, physical and mental energy to be able to provide the care, that someone else is counting upon you for.
We can often (wrongly) feel guilty and ashamed just for taking a break from caregiving, even if it’s a few hours in a park, for example. I think it’s important to understand the boundary between caring and caretaking as it can get blurred easily.
Susannah Fox says
Yes! Creating a habit of taking breaks, or putting on your own oxygen mask, is key.
I realized that the other “item” I packed in my friend’s starter kit is a friendly, experienced peer caregiver that she can call anytime for advice (me). My friend is caring for an aging parent — a role I’ve played and know is quite different from caring for a sick child, spouse, or friend.
Rajiv Mehta says
I know how important it is that the initial help is measured and focused — enough to be helpful immediately, and definitely not something that adds to the sense of being overwhelmed. So a short list, like you have done.
In a similar spirit, I would encourage a two-step approach to using the Atlas CareMap. As step one, draw your map quickly, and don’t put any energy into being complete. Don’t force yourself to think about “doctors, vendors, lawyers, …”. Rather, just go with whatever comes top-of-mind, and start there. Start there. Reach out to those people, tell them your situation, ask for their ideas and support — just as your friend did with you. Then as step two, when you’re feeling a bit more supported, start fleshing it out, adding all those other people (and contact info, etc.).
You’re very much an expert user, and so with your help, your friend can jump straight to step two. But for others, perhaps someone who comes across this blog, starting a little slower is best.
The one other suggestion I almost always make is to the Family Caregiver Alliance’s “CareNav” tool (https://fca.cacrc.org/login) — enter a little bit of information about your situation, and it will direct you to the most appropriate resources. You can use it no matter where you live, but if you’re in the San Francisco Bay Area you’ll also get connected to a resource specialist who can help further. If you want to search through the resources yourself, just go to https://www.caregiver.org/caregiver-resources/all-resources/.
Susannah Fox says
Thanks, Raj! You capture what I only implied: I wanted to send only what is absolutely necessary for this moment so as not to overwhelm.
That CareNav tool is incredible! My friend is going to need support from her siblings and is worried about how to navigate this new stage without bringing all the old rivalries out, too. I searched for “sibling” and got a wealth of articles to share with her.
Kevin Lawrence says
We recently read The End-of-Life Handbook in our book club on Smart Patients. It’s aimed at caregivers rather than patients but it’s a good read for both.
There’s lots of practical advice for taking care of someone who is going to die one day (which is all of us). There is guidance about paperwork, treatment decisions, how to talk about difficult topics and how to take care of yourself and other knotty problems that you will probably need help with. I recommend it.
I’ve just ordered A Beginner’s Guide to the End to keep it company.
The final chapter of The End-of-Life Handbook is about the meaning of life. I loved the suggestions to create personal rituals to ease the pain of loss and to remember the person who has died. My daughter and I have created a few mini-rituals including doing jigsaw puzzles together and drinking cocktails at The Broken Dock. One day, she will be doing a jigsaw and she will remember me and smile.
Susannah Fox says
Kevin, as always, your comment rings like a bell in my mind. Thank you.
I’ll order a copy of the End-of-Life Handbook and add it to my lending library.
Your essay about the meaning of life is gorgeous (readers: click on the link in his comment). I love the reminder to be mindful about the choices we make, the rituals we create or revive. My dad and I spent a lot of time on the water together so anytime I pass a body of water (especially when I’m near the Chesapeake Bay) I say “hi Dad!” and feel his love and enthusiasm well up in me.
For my friend, I’m going to ask her to think about how she can incorporate positive rituals into this phase of life with her loved one. Again, thanks for sharing your advice and experience.
Dave deBronkart says
Because of my mother’s decade of getting care (from my sisters), I raced to this post hoping for advice on settling in for a long haul of increasing intensity. My race came to a jarring halt with the immediate focus on approaching death! So I imagine the friend you wrote about got suddenly tossed into a situation that clearly has the end in sight.
I’m wondering what to contribute about a less abrupt onset. I have a personal interest in mapping out the space, because Mom’s demise makes it clearer than ever that this is a world I’ll enter in the foreseeable (10-20 years) future. (I turn 73 this month.)
I wonder if anyone’s created a visual story of the long long transition out of full function, in various dimensions that eventually travel the scale from self-sufficient to increasing caregiving. For mobility it starts with just using a cane, then a walker (there are SO many kinds, with a wide range of goodness), and then entering the kingdom of needing assistance from another person.
In parallel there’s the off-ramp from full-function driving to eventually not (and then how do you get around?), and transitions from self-sufficient cooking to needing assistance. (In the final year my sisters came to *love* the Tovala smart oven, far more than well-meaning meal services like Hello Fresh. Surprisingly good for an automated oven, saving time and labor for either the elder or the home caregiver.)
So I guess there are multiple dimensions to know about, each of which might need various degrees of caregiving: mobility in the home, getting around outdoors, getting where you need to go, feeding, housecleaning, cooking. And that’s all just practical logistics, without even touching on managing medical care, medications, appointments, hospitalizations (do not leave someone alone!), end of life planning.
Last weekend I had an epiphany: thinking ahead about end of life is the new “family planning.” (Why not?) I don’t mean like picking a date – I mean like being informed and aware about what our choices are, instead of waiting for a surprise pregnancy to just happen.
As I say, although I haven’t entered any of those “decline ramps,” I’m trying to get a clear picture of all the scenarios. And I’m not being glum about it – for me it’s like planning a trip to Switzerland with some challenging hikes to plan for.
Kevin Lawrence says
Hi Dave,
Your point about the abrupt shock of receiving a book about the end of life might be hard to bear is well taken but here’s a little anecdote for contrast.
Our book club conversation about the End-of-Life Handbook was one of the most widely read conversations last year on Smart Patients. Many (most?) participants had incurable diseases or were caregivers of a patient who did. I received several private messages thanking me for the discussion. Out of several hundred members who participated, only one said the topic was too bleak and several people pushed back and said, to the contrary, they found it empowering.
I totally agree though that we need to find a way to ease gently into the conversation. It would be a shock to be suddenly handed a book about dying!
I think there is a parallel with signing up for palliative care. Many people see it as a terrifying sign of the end but are pleasantly surprised to find how helpful it is. Even folks whose death is many, many years in the future would benefit from knowing what is ahead and how to seek help when the time comes. I certainly did.
Susannah Fox says
Dave, I love the idea of a new type of “family planning.”
It prompts me to think about how people in my life are reacting to aging is similar to how other people in my life reacted to childbirth (stick with me here).
When I was in the stage of life when lots of my friends were pregnant, they were roughly divided into two groups: The Prepared Planners and The Que Sera, Seras (Whatever Will Be, Will Be). The Prepared Planners read books, talked with other people who had given birth, took childbirth and infant first aid classes, thought carefully about the choices they might be asked to make, and wrote a birth plan. The Que Seras did none of this. They went into labor and were carried along like a leaf on a river, taking whatever drugs or interventions suggested to them in the moment. Happily, everyone I know personally had a healthy baby at the end.
The elders in my life are now divided into similar groups. The Prepared Planners are downsizing and dealing with their Stuff, moving to an apartment or senior living community, getting their legal and financial affairs in order, having open conversations about the end of life with loved ones, etc. The Que Seras are being carried along like a leaf on a river.
My friend’s loved one is in the Que Sera group, which is why I sent a Caregiver Starter Pack that gave her tools related to foundational questions, not the details of living with a long illness, managing family dynamics, meal planning, etc. If a Que Sera person has a will, power of attorney, health care proxy, and clear instructions on what interventions they want or don’t want, a LOT of trouble can be avoided. When that Que Sera elder dies, they will leave a bigger physical mess of Stuff than a Prepared Planner will, but hopefully less of a legal and emotional mess.
Dave deBronkart says
First, I triple-dang-doggie LOVE your “Que Seras” category! Same for the “leaf on a river” metaphor.
“Que Seras” is an instant classic. It reminds me of the mindset categories you cited in the e-Patient White Paper (p. 9) from Carina von Knoop at BCG: The Accepting, the Informed, the Involved and the In-Control.
Such distinctions make me think about underlying mindset. Re birth, I’ve often thought of the terrible reality of deaths in childbirth a century ago (e.g. my mother’s mother) which might well lead someone to feel, “There’s nothing I can do about it, so I’m just going to hope and pray for the best.”
But then, even today I imagine some people just *prefer* to let things take their course, at least until something goes seriously wrong. It’s a lot less effort to just ride along.
The same is probably at the root of why some (many?) people aren’t interested in becoming engaged patients, agree? I think of the oft-cited complaint from some providers that they were mandated by the gov’t to implement portals, which some patients don’t care about.
This discussion will be useful for the people in PACIOProject.org whose work includes advance directives. (PACIO is a health IT project involving continuity of care (specifically medical records) when people are discharged from hospital: Post-Acute Care Interoperability.) While people work on health IT software specs (including this), occasionally they wonder about stories of people who don’t care about what they’re doing. It’ll be useful to know there’s a spectrum (or many).
Again, kudos for Que Seras!
Dave deBronkart says
Rats – I wondered what von Knoop might think about this today, but it appears she passed away of leukemia complications in 2020 at age 51.
facebook.com/178616321993/posts/we-are-deeply-saddened-by-the-passing-of-carina-von-knoop-a-dedicated-and-loving/10157346383086994/
Susannah Fox says
Thanks, Dave, for the kudos and the reminder of von Knoop’s excellent categories.
I love typologies since they can help observers see a situation in a new way and hopefully recognize actions they can take to improve their own or someone else’s outcomes. My upcoming book is just such a guide.
Dave deBronkart says
> My upcoming book is just such a guide.
Tease tease tease tease; CAN’T WAIT CAN’T WAIT.