“The thing that caregivers fear most”

Catherine, a member of our local support group whose husband had corticobasal degeneration, forwarded this recent Huffington Post article as it really hit home for her.  The article discusses the difficulties  caregivers experience as their loved one becomes increasingly ill, as  time becomes short, and doubts appear about the caregiver’s ability to manage everything.

Steven Russell, Brain Support Network’s treasurer, read over the article and shared his comments:

As my father’s primary caregiver for the last six years of his life, I remember how many times the ideas expressed by the author came to the surface as anger, fear, resentment and frustration.  Here are the key ideas from this article that resonated with me.

#1 Actually, it is when you realize the possibly long-term nature of the care that you begin to question your abilities.

“But as any caregiver who is being honest will tell you, the scariest part is not when defeat starts to creep in around the edges. It’s when it doesn’t and you start asking yourself ‘how much longer can I do this?’ It’s the status quo and the possibility that this is my new normal that destroys me.”

#2 You think you are at a “plateau” and then the bottom drops out.

“Once you step on the medical treadmill, there is no way to slow the damn thing down.”

#3 All caregivers have these feelings.

“Ask any caregiver and they’ll tell you we are the invisible patients, the ones whose needs are neglected, whose pain goes untreated, whose job it is to be cheerful and keep the family train running on time while we die a little more inside each day.”

#4 And if only those we care for could “try harder to get well, try harder to appreciate us, try harder to understand that our best may not be enough but it remains our best.”

Relying on friends, family and community support (like our caregiver support group) can help you focus on your needs as well — something that is vital for both you and the person you are caring for. You needn’t experience these feelings alone.

Here’s a link to the article:


This is the thing that caregivers fear most
The worst part is not when defeat starts to creep in around the edges.
Huffington Post
by Ann Brenoff
August 25, 2016


“Tough Love: Succeeding as a spousal caregiver”

Dorothy, whose husband had Lewy Body Dementia and is part of our local support group, forwarded this article on caregiving for a spouse from the current issue of Neurology Now.

Steven Russell, Brain Support Network’s treasurer, read over the article and provides a summary of the key points.

Although the title includes “spousal caregiver,” I think much of it applies to those who aren’t married as well as to those who are providing care and support as an adult child, friend, etc.  Although not focused on caregiving for someone with an atypical parkinsonism disorder, the article makes excellent points for anyone caring for someone with a chronic disease.

Here are some key points:

#1 Men and women have very different reactions as patients and caregivers and this can lead to big changes in relationships:

“Men are more likely to leave the marriage if they become a caregiver because they feel there is little they can get back from the relationship…  [Women] were six times more likely to be separated or divorced after a diagnosis than men in the same situation.”

#2 Get help early and continuously add to your care team:

“Many people will say that they will do as much as they can until they can’t anymore, and that’s not good for anyone.”

#3 Roles will change, whatever the relationship at time of diagnosis.  Figure out what needs to be done and have resources available:

“Both spouses need to come to terms with the change, accept it, and get help if the change is too much to handle.”

The author provides these tips for the caregiver navigating challenges:
* Prepare for change
* Reassess roles
* Resist taking on everything
* Avoid isolation
* Cultivate healthy communication
* Be open to intimacy
* Guard against depression
* Ask for help
* Carve out “me” time

Check out the article for details on each of these tips:


Tough Love: Succeeding as a spousal caregiver means knowing when to ask for help, finding time for yourself, and making peace with your partner
Neurology Now
by Paul Wynn
August/September 2016, Vol. 12, Issue 4

Neurology Now magazine is available by free subscription.  Click on the “Subscribe Now” link at the bottom of the article on caregiving.  You have to verify each year that you still want the magazine.


Parkinson’s Caregivers Summit, 9/19, 9am-3:30pm PT, via webcast

Join in this Parkinson’s caregivers summit on Monday, September 19th, 9am to 3:30pm PT via webcast.  Only the CareMAP part of the agenda is obviously Parkinson’s-specific, so I believe most of the summit will be of interest to those in the Brain Support Network community.

The World Parkinson’s Congress will start in Portland on September 20th.  The day before the WPC, the National Parkinson Foundation (NPF) is hosting a PD caregivers summit in Portland, from 9am to 3:30pm.  NPF aims to have caregivers “share experiences and everyday strategies for coping with the complex problems that arise as a result of PD.”

Anyone can participate in the summit via webcast.  During the webcast, there will be two one-hour gaps during which break-out sessions are held.


Register here for the webcast:



9:00 – 9:20 am
Susan Imke, FNP, GNP-C, Kane Hall Barry Neurology (Bedford, TX)

9:20 – 10:00 am
Maintaining Dignity and Identity
Susan Hedlund, MSW, LCSW, Oregon Health & Science University (Portland, OR)

10:00 – 10:40 am
Caregiving: The Emotional Rollercoaster
Jan and Seale, poet caregiver advocate (McAllen, TX)

10:40 – 10:50 am
Coping Strategy: Yoga & Stretching
Kaitlyn Roland, PhD, University of Victoria (British Columbia, Canada)

10:50 – 11:05 am

11:05 – 12:00 pm
Breakout 1 (to be announced soon)

12:00 – 12:50 pm
Lunch and Networking

12:50 – 1:05 pm
Tools for Family Caregivers: CareMAP and Caring & Coping
Vaughn Edelson, National Parkinson Foundation (Miami, FL)

1:05 – 1:15 pm

1:15 – 2:10 pm
Breakout 2 (to be announced soon)

2:10 – 2:20 pm

2:20 – 2:30 pm
Coping Strategy: Mindfulness
Paula Wiener, MSW, LCSW, National Parkinson Foundation (Chicago, IL)

2:30 – 3:30 pm
Embracing the Challenge: A Panel Discussion
Moderator: Tony Borcich, LCSW, Parkinson’s Resources of Oregon (Portland, OR)
Julie Beck, spouse of person with young-onset Parkinson’s (Chicago, IL)
Rick Bentley, adult child of person with Parkinson’s (San Francisco, CA)
Pat Smith, spouse of person with Parkinson’s (Canandaigua, NY)

“The Life-Changing Magic of Choosing the Right Hospital”

Steven Russell, Brain Support Network’s treasurer, recently came across this New York Times article and summarized the key points and resources mentioned.  Here’s his email…

The New York Times recently published an article on the importance of choosing the right hospital for various surgeries and other medical procedures. Obviously you don’t always have time to prepare when an emergency happens, but by researching outcomes (safety, efficacy, readmission rates) and consulting with your physician prior to hospitalization you can achieve better results just by driving a few miles to a hospital with higher service/safety scores.

Here are two key points:

#1.  You don’t have to travel far to receive improved care and outcomes:

“To receive care at a hospital with a one-percentage-point gain in survival rate or a one-percentage-point decrease in readmission rate, a heart attack patient traveled 1.8 or 1.1 miles farther, respectively.”

#2.  Beyond doing in-depth research with the links below, many patients should discuss hospital and clinical care services with their physician:

“Doctors are more attuned to clinical quality than patients can be, because patients lack the expertise and don’t engage with the health care system frequently enough to evaluate hospital quality.”

Three excellent resources mentioned in the article are:

Medicare/Medicaid compare hospital services tools

Hospital Inspections

California hospital information
(Select Hospitals from the drop-down menu. There are other options you can research here: assisted living, adult day care, etc.)

Another resource I like (not mentioned in the article) is:

“A Guide to Choosing a Hospital”
From the Centers for Medicare and Medicaid Services

Here’s a link to the complete article:


The Life-Changing Magic of Choosing the Right Hospital
The New York Times
Austin Frakt
August 22, 2016

Happy reading!

Steven Russell

“10 Actions that Helped our Family after Mom’s Alzheimer’s Diagnosis”

Occasionally I check out online Alzheimer’s support groups.  Yesterday, I came across this helpful post titled “10 Actions that Helped our Family after Mom’s Alzheimer’s Diagnosis.”  Though this was written by a daughter whose mother had Alzheimer’s, I think this advice applies to anyone coping with a neurological diagnosis.

The ten actions described are:
1.   Gather the troops, build a support network
2.   Divvy up the tasks
3.   Educate yourself about Alzheimer’s disease and local resources
4.   Review legal documents
5.   Find the right doctor(s) and care team
6.   Look at alternative situations, just in case
7.   Expect cognitive decline and prepare for change
8.   Be patient
9.   Enjoy and celebrate the good days
10. Take care of yourself and stay connected with others

For details on the ten actions, see the post: