Hello caring friends,
This is Marc writing. Our last few updates have either been about events or the big picture. I worry we have gone too long without updating you on Hanna’s health. So that is the focus of this update.

In the video below you’ll hear directly from a few of the people involved with Hanna and her care. We recorded this as part of a weekly meeting of the “TLC Group.” TLC is a subset of the Careforce, including Hanna, who have been meeting every Monday for the last two years to talk about logistics, technology, institutions, fundraising, decision-making,… all The Stuff That Must Be Done. I’m part of that, with Lizzie Anderson, Michelle King, Erika “Akie” Johnson, Erika “Goldie” Kestenberg, Seth Payne, Ti Wilhelm, Hanna. Giants, they are.

Hanna’s body has entered a new phase
Please watch the video below, as it goes into the details of what Hanna is experiencing and how her those around her are responding. As a quick summary….

Hanna has said that it feels like she is in a new phase. And we around her are noticing that too, as her care requires more attention and involves some new tools and techniques. She is becoming less able to manage mucus, so there is more risk of choking incidents and aspiration which can lead to pneumonia. After the first couple of scares (scary scares!), we’ve put protocols in place so caregivers know how to quickly respond and clear her throat. And we’ve stepped up preventive activities like regular suctioning and mouth drops that reduce saliva.

Hanna requires less nutrition than she has in the past, and generally she is getting weaker. Again, we are responding as best we can by discovering along with Hanna what’s helpful, what’s needed.

Hospice care
After a first experience that was very unsatisfactory, we found a hospice group that is providing valuable and caring support to Hanna and her caregivers. You may know that hospice is a type of care that focuses on the end of life, emphasizing physical and emotional comfort—what’s sometimes called “palliative care.” With hospice, we now have weekly home visits with a helpful aide and an attentive and knowledgeable nurse, and responsive one-call response to questions, supply needs, and emergencies. We’ve made several of nighttime calls to them—it’s comforting to have skillful companionship in times of confusion or distress.

“Go out on a Lilo”—Staying in Pittsburgh, not going to Vermont
You may remember that Hanna and a few Careforce folks made a trip to Vermont last year, to visit a “Medical Assistance in Dying” (MAID) clinic. That was a way for Hanna to keep her options open, to preserve her ability to choose the manner and timing of her death.

As Hanna’s body has weakened, we’d all become a little intimidated at the prospect of making another two-day drive to Vermont. And dying in another state, far from both family and community, is far less than ideal. In conversations with Hanna’s hospice group, we now have a clearer picture of what it will mean for Hanna to stay in Pittsburgh. What her end may be like, what choice and control she has, and what assurances of comfort she can depend upon.

Hanna says she wants to “go out on a lilo,” and that’s our guiding metaphor. (For U.S. folks, in South Africa “lilo” (as in “lie low”) is the word for the air mattress things you use for a relaxing float in your swimming pool.)

Here’s the video
I’m so happy to share this with you, because you get to meet more members of the Careforce, hear some of our shop talk, and catch the tone and spirit of the group.

You should know before you listen: we are speaking plainly about Hanna’s symptoms and the process of dying. I realize we are in a kind of bubble in which it is normal and actually important to engage with all of this as a matter of fact. The video contains plain talk about the details of care and the facts of dying. At the same time it is a group of people who love one another and who are caught up in a great flow of loving care. So I hope you watch (but you don’t have to <smile>).

If you don’t want to know or watch, we invite you to get curious about your resistance. Maybe there is something it’s trying to tell you? One of the questions we hold is this: why are we afraid of suffering and dying?