014 - On helping a friend think through next steps.
Back to writing (and to your in-box) after a week away.
Welcome or welcome back.
I think I warned you, and me, that April was going to be busy. And it was. (I even missed writing last week (and maybe you didn’t notice!))
But I’ve completed some assignments, worked the shifts, been present for some unexpected moments. And now I need to write. It’s what I do to figure out what I’m thinking.
In this edition, I’m sharing an email I wrote to a friend. And I’m sharing a resource I stumbled across this month.
Thanks for your support and encouragement. It’s good to be back here.
I got an email from a friend.
“Are there things you see families not taking into consideration when a loved one returns from an extended hospital stay?”
It’s not the thing I write about often. I’ve realized that I’m particularly concerned with being helpful in the seconds, minutes, hours, days, and weeks after a loss. So, I haven’t stopped to think about what I know about what to do when a loved one lives.
I care about him, however, and his family. And so, it was a helpful writing prompt.
Here’s what I said (mostly and edited some).
Thanks for writing.
I read your incredibly wise statement early in the Caring Bridge notes you are writing about turning your attention toward your family rather than toward answering everyone who reaches out, and so have not added to the word burden you are carrying. But I have been very mindful of you all.
The very first thing that came to mind is Silk’s Ring Theory--which has nothing to do with silk. It's worth the read. And gives you permission to tell people to shut up. Ring Theory: How not to say the wrong thing - Los Angeles Times (latimes.com)
I think people in America assume that everything is better when you get out of the hospital. Because, you know, medical miracles. But we overestimate our capacity, and we underestimate the challenge of going from intensive care to home. There is a numbers aspect to healthcare, and people are released as soon as is feasible. Which is different than "the same as two days before I came in."
When you get home, familiar surroundings tell us that we should all be all better, and we're all still healing. So anticipating a gradual process of healing and reentry and accessibility is important. As is anticipating frustration that things aren't all better right away.
There are often groups that can provide support of various kinds. There are national and local organizations for stroke, Alzheimer’s, various forms of cancer, rare diseases, and so on. I’m not talking about googling the illness, by the way. I’m talking about connecting with the people who have shared experiences. Be willing to ask very specific questions of the people who know.
Your family has your own systems that you've navigated for living. Trust your systems. (What I want to say, for example, is that you personally can be really optimistic and "go for it". But being quiet, and allowing for space for brain healing is important. But here's the thing. You all know what you all do. And what for me feels way too cheery is what feels right for you all. :) ) So feel free to tell people “Thank you but we're fine.”
That said, if anyone ever says, "Is there anything I can do?", have specific answers prepared. Like "could you wash the car for us?" or "we have family coming in. Could you give them a ride?" It's the perfect time to ask without fear.
Laugh at inside jokes.
Don't listen to anyone who starts a sentence with "at least" unless they... well, don't listen to anyone who starts with that.
I don't think I've ever heard from anyone who regretted PT (physical therapy) or OT (Occupational therapy). I know of people who have regretted not using them. (And, I could be wrong.)
People will forget. They'll forget that healing takes time. They'll forget that [your illness] things aren't predictable. They will be even more verbally clumsy than usual. I've got no answer to that. But it's real.
I'm already much longer than I like to be in offering support, but you asked. And I love you guys. My number is ###-###-####. I only know what I know, but I'm willing to share that.
The both of us.
Oh. And the kids. They are having their own versions of trying to make sense of this. I don't have answers to that. But I wanted to point that out.
On faith and palliative care: from an M.D.
Lauren Gnagy is a physician working a little way west of Indianapolis. I came across this reflection on her work in palliative care, talking about connecting faith and people dying. I haven’t written on this, not really. But her essay resonates. And will help you understand palliative care.
“When I tell people that I work part-time as a palliative medicine doctor, I often receive one of three common responses. There is a perplexed “What is palliative medicine?,” an incredulous “Why would you want to do that?,” and an admiring “You must be a special person.” I haven’t quite figured out how best to respond to the compliment, but I have a well-rehearsed answer for the questions.
Hoping for the Best, Planning for the Worst - Mockingbird (mbird.com)
Thanks for reading. And for supporting this work.
This week I sent this note to someone who has become a regular supporter.
I'm so grateful for your ongoing support. It helped me, for example, send three copies of "This is Hard" to a family touched by one of the recent mass shootings after I discovered that I had a connection.
Sometimes I buy coffee, too.
See you next week.
May have not been the best day to read this one but it was good to release some tears on the long goodbye road. God's timing is always. Blessed to have these resources.
You are a blessing and appreciated.