At least 67,000 individuals have died of Covid19 in the US and 244K worldwide so far. Each death is a family’s grief. How do we advocate for ourselves, each other? Palliative care = feeling less miserable. Have you discussed end-of-life and palliative care with your family? Do it now.
Bioethics, the term first coined by someone (who is a controversy) in 1971, includes four principles – respect for autonomy, nonmaleficence (do no harm), beneficence (for me, on behalf of me), and justice. Ken Goodman spoke about two of the four principles autonomy and beneficence. As with much when you start peeling back the layers, bioethics are not simple, not black and white, rather shades of grey.
What can the clowns can teach us as patients and caregivers about relaxing, reading the room, figuring out what you’re there to do, and not ending up more stressed than you went in. Maybe even having a bit of fun. In this podcast we will speak with Jason Stewart, a clown at Boston Children’s and listen in on a working session I led at the National Caregiving Conference in Chicago this past November, entitled, Reading the Room and Yourself. Lessons We Can Learn from the Clowns When We Go to the Doctor’s Office. Lessons from the clowns? Humor, humanity, failure. Reading the room. You are not alone. Read More
My boy, Mike, died 15 years ago today (sigh). Here’s a link to a video of an interview with Mike 4 months before he died. (11 minutes).
This anniversary and attending the National Caregiving Conference last week made me think about being a caree, someone who is being cared for. My grandmother, my mother, and Mike were carees. Mike accepted his mortality but didn’t want someone to have to wipe his butt. That was a point too far. As a Holocaust survivor, my mother craved being cared for all her life, yet was deeply ambivalent until her last days. She fought for control and felt deep gratitude for a warm, kind hand. My grandmother wanted more care than she needed (in my opinion, not hers). I mostly sensed fear. I’m only just tasting being a caree. Read More
I just got home from the 2nd Annual National Caregiving Conference in Chicago convened and hosted by Denise Brown and NationalCaregiving.com. You know the drill – most health care anywhere in the world is provided by family caregivers and parents. The attendees, mostly active or recent caregivers, networked over their shared lived experience. Presentations about caring for elders with dementia was the most common thread and topic. Occasionally I heard chatter about caring for children or depression. Sometimes the stories of frustration, exhaustion, and loneliness overwhelmed those of gratitude, survival, and inspiration. It’s hard for me to hear too many of the painful stories and maintain my pathological optimism.
I especially appreciated the session about surviving and blossoming as a couple while caregiving led by Frank and Lisa Riggi – heartfelt, practical, and humorous. 10 Activities to do With Your Spouse Every Year – 10!, Only 10? I ask many caregivers, “How goes your marriage/partnership?” Faces fall. Cathy Sikorski‘s keynote, Preparation, Frustration, and Surrender…Boldness Throughout Caregiving was an intriguing combination of hands-on, funny, and legal. Imagine you’re talking to the Cable Company. Be Bold!
Did you know that a third of caregivers die before their caree? Crazy? Not really. Caregiving wears you down, while caregivers put their caree before themselves. Self-care: I loves that theme. This crowd seemed to self-care better than many.
The entrepreneurial spirit shone. My favorites: Carla Macklin’s Adaptive Clothing; Mekhala Raghavan and Angie Creager’s bathing aids and fall prevention (Waiting for production of their vibrating neuro-responsive fall prevention mat and their wash and vacuum the water shower anywhere system. I’ll try anything for fall prevention for myself and narrow doorway bathrooms are endemic in older homes); Quikiks Hands-Free Shoes (I’m always looking for easy, safe, comfortable shoes); and Shirley Riga’s book, “Tools for the Exceptional Parent of a Chronically Ill Child” published by Strong Voices Publishing. Check them out! I love to hear what works for people. Solutions from the trenches rule! (I receive no compensation from anyone mentioned here.)
I attended as a panelist for The Family Connection: Supporting Essential Care Partners as Patients Transition to Home, with Geri Lynn Baumblatt, Mary Anne Sterling, and Cathy Crookston. Most nightmares I heard at the conference involved transitions to or from medical care. I did hear one story of the transition done very, very well. It can be done. If you’re lucky it’s because one person made a difference. It shouldn’t be luck. Caregiving is hard enough.
Caregivers: How do you manage your marriage? When has BOLD worked for you? What’s the best transition you’ve experienced?
Honor the caregivers. Help the helpers.