“It’s Time to Have a Conversation About Your Health Care Decisions”

In honor of National Healthcare Decisions Day, which is coming up next week (April 16th), we are sharing a blog post from last year about having a conversation about your healthcare decisions.  The blog post is from Transition Aging Parents (transitionagingparents.com), a website started by a woman who was a caregiver to her mother.

Why is it important for us to start a conversation with our families and physicians about our healthcare decisions?  Because we cannot count on:
a) being able to communicate your preferences at every juncture, or
b) that the medical community will make the same choice you would, depending on the circumstances.

Two useful websites are mentioned in the blog post:

#1 – National Healthcare Decisions Day website, nhdd.org.  Lots of resources because “it is never too early to talk about your health care preferences and you do not have to figure it out on your own.”

#2 – “Hello” conversation game, commonpractice.com/hello.  This is an “easy, non-threatening way to start a conversation with your family and friends about what matters most to you.”




It’s Time to Have a Conversation About Your Health Care Decisions
by Laura E. Bender, guest blogger
Transition Aging Parents
April 19, 2017

Conversations about the end of your life can be scary, sad or awkward. But these conversations also can be comfortable.

A few years ago, on a flight from Denver to Philadelphia, the woman seated on my left asked me what I did for work. I assumed my response would kill the sociable dynamic of our conversation if I didn’t choose my words carefully. I’m a palliative care researcher and, at the time, I was reading detailed patient death notes in medical records and talking with family members of recently deceased veterans about the care they received in their last month of life.

“I study the experiences of people dying and the choices people face at the end of their life,” I told her.

Most people would quickly respond with a degree of uneasiness, saying how sad my work must be, and then they find a way to change the conversation. This woman was refreshingly different. She dove into how important she knows my work is and how she is confident in the choices she has made for herself. I learned she was perfectly healthy and vibrant. She didn’t work in a health care related field, but she was clear when she did and did not want a resuscitate order.

Many people rarely have such a casual conversation, let alone any conversation at all about advance care planning and end-of-life choices. But now is a good time to think about that decision by using the many free resources available for National Healthcare Decisions Day at nhdd.org.

I confidently can say that people often don’t know that they even have choices. Many of the people I have spoken with assume they will get the type of care they want wherever they are. If a person has a condition so severe that he or she is unable to communicate, doctors, family members, friends, and, even, sometimes state and federal regulations dictate what happens. Any disagreement may prolong decision-making and possibly increase the chances of suffering. This confusion and conflict that can arise during difficult times can be eased with preparation.

Educational barriers often result in inadequate end-of-life care conversations. The NHDD website provides links to official legal documents for your state, as well as games, such as “Hello” (commonpractice.com/hello), a conversation game about “living and dying well” that can be played by anyone of all ages. NHDD reminds us that it is never too early to talk about your health care preferences and you do not have to figure it out on your own.

I long to live in a world where there are people like the woman on the plane who feel empowered to discuss these important decisions. Show love for yourself and those you love to live the best life all the way through to the last moments.

Laura E. Bender is a Ph.D. student in health services research at the University of Washington School of Medicine.

Congratulations to “Sue’s Story”

Congratulations to “Sue’s Story” — winner of the “Audience Choice Award” for the best documentary at last weekend’s Jasper Poppy International Film Festival in Morgan Hill, California. When Sue Berghoff was diagnosed with Lewy Body Dementia (LBD), her life was turned upside down. Like most people, she had never heard of the disease even though it is the second most prevalent form of dementia after Alzheimer’s. She encountered a society in which the existence of dementia is burdened by misconceptions, fear and shame. What she did next created a ripple effect of hope and change. Sue’s husband Chuck Berghoff is a member of Brain Support Network’s  LBD caregiver support group. Brain Support Network’s CEO Robin Riddle appears in the documentary, speaking about the importance of brain donation for LBD and the value of a caregiver support group. Stay tuned to Brain Support Network for more news about the distribution of “Sue’s Story.”

“31 Five-Second Reminders that Will Make Calmness Your Superpower”

This blog post, from Marc & Angel’s “Hack Life,” is a list of 31 five-second reminders that will make “calmness your superpower.”  Here’s a short excerpt from the intro:

“The ultimate measure of your wisdom and strength?  How calm you are when facing any given situation.  Yes, calmness is a human superpower.  The ability to not overreact or take things personally keeps your thoughts clean and your heart at peace, which instantly gives you an upper hand regardless of your circumstances.  Thus, the biggest and most complex obstacle you will ever have to overcome is your own mind.  If you can overcome that, you can overcome almost anything.  And by ‘overcoming,’ I’m referring to the skill of mindfulness, and learning to effectively control your emotional responses to life’s unexpected tests.  Because most of your deepest pain and frustration on a daily basis will come from the way you respond, not the way life is.”

And here’s one of the five-second reminders:

“When you are lost in worry, it is easy to mistake your worries for reality, instead of recognizing that they are just thoughts.”

Check out the full list of reminders here:




Capgras syndrome – almost 20% of people with LBD have

This is a sad but helpful article on Capgras syndrome, a specific type of delusion where a person believes that loved ones have been replaced by identical duplicates. They often believe that the loved one has been kidnapped and the “imposter” is a bad person. This is very common within our local Lewy body dementia support group. According to the article, one report showed a prevalence of 16.6 percent of those with LBD have Capgras syndrome.

Here’s a link to the article in today’s Washington Post:



Health & Science
This strange syndrome causes people to think their loved ones have been replaced by identical impostors
Washington Post
By Meeri Kim
April 7, 2018



Hiring a geriatric care manager – why and how

Though this article is titled “when to hire a geriatric care manager for your parent,” this article applies to all types of people who would hire geriatric care managers, not just adult children. This is a good article that covers these topics:

* how a geriatric care manager can help
* how much does a geriatric care manager cost
* how to hire a geriatric care manager
* questions to ask a geriatric care manager
* how to get started

For those in the Menlo Park area, this Wednesday there will be an excellent geriatric care manager speaking at the Parkinson’s support group meeting from 2 to 3:30pm at Little House. No RSVP is required. Come check out how she answers these questions.

Here’s a link to the full article:


When to Hire a Geriatric Care Manager for Your Parent
Getting answers to questions and having an advocate can be valuable
By Sarah Stasik
From Caring.com
April 6, 2018