“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.”

Robin

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www.transitionagingparents.com/2017/04/19/its-time-to-have-a-conversation-about-your-health-care-decisions/

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.

“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:

www.marcandangel.com/2018/04/08/31-five-second-reminders-that-will-make-calmness-your-superpower/

Robin

 

Jackie’s example of a letter to family/friends to help them communicate better

On Tuesday, Jackie Vandenberg, who lives in NY with multiple system atrophy, asked people to share her open letter to family and friends.  The goal of her letter is to help family and friends communicate with her better.  I think it’s worth sharing with everyone as it is not MSA-specific but person-specific.  Others may want to use this open letter as a model for their own letter to aide in communicating with your family and friends.


Dear friends and family,

I always appreciate when friends and family come to visit. I noticed
lately that some people struggle knowing how to talk with me as my
ability to communicate decreases. I have brainstormed a few things to help…

1) I enjoy socializing even though I cannot speak back. I’m interested
and am listening when others tell me about themselves. I like to hear
about how people are doing, their families, hobbies, vacations,
experiences, weekend activities, etc.

2) I wish to be spoken to as a person and an adult. Please speak to me
normally by not using slower or louder speech, or a reduced vocabulary
and sentence structures. I like to be part of the conversation by making
eye contact and being spoken to directly.

3) It’s easier/quicker for me to be asked ‘yes’ or ‘no’ questions.

4) When we’re together you can talk or not talk, either is fine. I’m
comfortable with quiet too.

5) I use a piece of cardboard with the alphabet written out to
communicate, we call it a Ouija Board. I can point to letters to spell
out words. I need someone else to hold the cardboard and adjust it as I
go. It can take a while for me to spell out sentences so I appreciate
everyone’s patience. It’s ok if you don’t understand a word the first
few times, as Tom and Adrianne can attest to.

6) When I’m using the Dynavox communication device it’s ok to fix
letters/autocorrect for me.

7) A symptom of MSA is excessive drooling. If you’re comfortable doing
so you can use a tissue or washcloth to wipe my mouth.

8) The best way to contact me to make plans is on Tom’s cell phone
through call or text. I check my email and Facebook messenger every
couple of days and am happy to get messages there too.

I hope this list is helpful for everyone! I love having friends and
family visit and appreciate all of our time together.

With Love,
Jackie

“The Happy Hours” – great idea for socialization and other thoughts from KLS

Kathryn Leigh Scott (kathrynleighscott.com) has recently published three books about caregiving —
“The Happy Hours”
“A Welcome Respite”
“Now With You, Now Without”

In January 2018, I shared Denise’s short review of “A Welcome Respite.”

In 2016, Kathryn Leigh Scott (KLS) published the beautiful book “Last Dance at the Savoy,” about caring for the love of your life through the very end. KLS mentions Brain Support Network for help with brain donation in this book. Denise’s short review of that book is posted to our blog, www.brainsupportnetwork.org/blog.

After listening to a February 2018 interview* of Kathryn Leigh Scott, I think “The Happy Hours” might be of interest to some of you. I haven’t read it yet but, in the interview, Kathryn shares the core idea of the book. In her husband Geoff’s final years — after he was diagnosed with progressive supranuclear palsy (PSP) — she was determined to make the most of his remaining time. And she was determined that neither Geoff nor she, as the caregiver, would be isolated.

KLS and Geoff instituted “happy hour” at their home. The happy hour took place in the master bedroom. She removed all signs of medical equipment or disability. She added a bistro table and chairs. There was an open door policy. Anyone could come. Geoff wore an amplification device so that his voice could be heard. Apparently these gatherings were very important to her husband as they helped him be remembered by others.

In the interview, she mentions a few other things worth sharing here. First, she says that the key is to have patience. She tried to remember that “Geoff can’t help it.”

Second, she found the role reversal of caregiving very difficult.

Third, she addressed the importance to her husband Geoff of his engaging in research. He participated in trials. And he donated his brain for research. They both participated in an environmental study of PSP.

Fourth, she recommends hospice at home. She doesn’t call hospice “end of life care” but rather “quality of life care.”

A few things were said about PSP in the interview. I’ve put some notes about that below for the PSP folks on this email list.

Robin

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* https://www.youtube.com/watch?v=j4hzl7SYseA&feature=youtu.be

The caregiver-related part of the interview is basically from minute 6 to minute 22.

From minute 6 to minute 10:27, Kathryn Leigh Scott offers some general information on PSP. She describes PSP as being part of a family of five progressive movement disorders. The five are PSP, corticobasal degeneration, multiple system atrophy, Lewy body dementia, and ALS. The host of the interview incorrectly refers to these as auto-immune disorders. KLS said that 20K people a year are diagnosed with PSP in the US. PSP research is informing Alzheimer’s research.

“Getting Sick Can Be Really Expensive, Even for the Insured” (NYT)

This eye-opening article in today’s New York Times (nytimes.com) is of most relevance to the multiple system atrophy community as MSA often hits in ones 50s.  The article addresses how “getting sick can be really expensive, even for the insured.”

The author notes:

Among people in their 50s who were hospitalized, about 10 percent never went back to work.  Some others scaled back their hours or took lower-paying jobs.

The full article is well worth reading:

www.nytimes.com/2018/03/21/upshot/getting-sick-is-really-expensive.html

Getting Sick Can Be Really Expensive, Even for the Insured
Beyond medical costs, a trip to the hospital can mean a permanent reduction in income for many Americans, new research shows.
By Margot Sanger-Katz
New York Times
March 21, 2018

Robin