“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

 

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a sad but helpful article on Capgras syndrome, a specific type of delusion where a person believes that loved ones have been replaced by identical duplicates.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:

 

www.washingtonpost.com/national/health-science/this-strange-syndrome-causes-people-to-think-their-loved-ones-have-been-replaced-by-identical-impostors/2018/04/06/0091f168-1be6-11e8-9de1-147dd2df3829_story.html

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This strange syndrome causes people to think their loved ones have been replaced by identical impostors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

Robin

 

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:

www.nextavenue.org/hire-geriatric-care-manager-parent/

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

Robin

 

One woman’s candid story about caregiving for an aging parent

This is a sweet but sad article about a woman caring for her mother. The woman describes the “guilt” in caring for an aging parent. The guilt comes from feeling that respites are too short and not missing a parent while away on the respite.

Here’s a meaningful excerpt: “People who have cared for loved ones told me it takes time to miss the healthy, vital person who dies, the person you enjoyed talking to and doing things with, not the needy or sometimes unknowing imposter. You don’t miss being a caretaker, you miss being a friend, wife or daughter.”

Here’s a link to the article:

www.nextavenue.org/miss-mother-gone/

I Didn’t Miss My Mother — Until She Was Gone
One woman’s candid story about caregiving for an aging parent
By Lisa Kosan
April 3, 2018
Next Avenue

 

Robin

 

Compassion fatigue in caregiving and ways to take care of yourself

Though this article has “dementia caregiving” in the title, the issue of “compassion fatigue” applies to all caregivers.  In caregiving, the “demands are many” and there is not enough time to get everything done.  Any many times the person receiving care resents being helped or may not express appreciation.

The author believes caregivers can overcome compassion fatigue by caring for themselves.  She suggests several ways to care for yourself:

* don’t take outbursts personally
* be kind to yourself
* share your feelings
* talk to someone
* find support
* validate your feelings
* grieve
* have fun

This is a blog post on the Huffington Post Canada website so some of the words having British English spellings.

Find the post here:

www.huffingtonpost.ca/gail-elliot/compassion-fatigue-caregiving_a_23389637/

Compassion Fatigue Is A Reality Of Dementia Caregiving
If you are connected to the world of dementia care, the demands are many. In your quest to help others, are you taking time to care for yourself?
by Gail Elliot
HuffPost
03/20/2018 

Robin

 

Anosognosia – lack of awareness (not denial) of one’s own dementia

This short article from Next Avenue (nextavenue.org) is about anosognosia, or the lack of awareness of one’s own dementia.  This is not denial but being unaware.  “This lack of awareness can cause major stress and heartache for caregivers.”

Here’s a short excerpt:

Both of Kathy Kling’s parents, who are divorced, have Alzheimer’s. Kling recently talked with her mother, Karen Kelly, about her father’s disease. “Oh, I hope I never get it,” her mother replied.  She was diagnosed six years ago.

The full article is here:

www.nextavenue.org/parent-doesnt-recognize-dementia/

When Your Parent Doesn’t Know He Has Dementia
It’s a common aspect of the disorder, but tough on caregivers
By Emily Gurnon, Health & Caregiving Editor
Next Avenue
March 28, 2018

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

———–

* 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.

Apathy – 3 components, case study, vs. depression, and strategies

Apathy is a common symptom in frontotemporal degeneration (including frontotemporal dementia, progressive supranuclear palsy, corticobasal degeneration, etc) as well as other disorders such as Parkinson’s disease and Lewy body dementia.  In my experience working with caregivers of these neurological diseases for nearly 15 years, I can say that apathy is one of the most challenging symptoms for caregivers and families.

The Association for Frontotemporal Degeneration (AFTD, theaftd.org) has just published its winter issue of “Partners in FTD Care.” The newsletter, for healthcare professionals, presents an overview of the three components of apathy — initiation, planning, and motivation. A case study is shared of Linda and her caregiver husband Kevin. There is a discussion about what distinguishes apathy from depression.

Additionally, there are lots of strategies provided to manage apathy. And two views of apathy are shared — one from a person diagnosed with frontotemporal dementia and another from an FTD caregiver.

I’ve copied a few excerpts below but the entire newsletter is worth checking out, if you are coping with apathy.

Robin

———-

https://www.theaftd.org/wp-content/uploads/2018/03/PinFTDcare_Newsletter_Winter_2018.pdf

Excerpts from
Partners in FTD Care
WINTER 2018
Association for Frontotemporal Degeneration

Components of Apathy
Three distinct components of goal-directed behavior are initiation, planning, and motivation. Each is supported by a distinct region of the frontal lobe. Apathy may emerge where there is dysfunction of any one of these components; understanding
them may help care providers and families to develop interventions tailored to an individual’s particular needs.

What distinguished her apathy from depression?
Linda’s family doctor ascribed her loss of interest in activities and relationships to depression, despite Linda doing well on the Mini-Mental Status Examination and not presenting as sad or concerned about the changes in her life. Antidepressants did not change her symptoms. She struggled throughout a psychiatrist’s evaluation of her planning, working memory, verbal fluency, and mental flexibility. Her history and executive-function impairment prompted the psychiatrist to order an MRI to investigate further. Prominent atrophy in Linda’s frontal lobe indicated the apathy
was due to degenerative disease rather than depression, and the doctor diagnosed FTD.

How did Linda’s husband cope with her growing lack of motivation and activity?
Kevin found himself frequently overwhelmed and angry that he had to plan and arrange all of Linda’s activities. He found himself thinking that she was sometimes being purposeful and defiant, even though he understood that her changing behavior was a result of FTD. He attended a caregiver support group led by an AFTD-affiliated facilitator where he could talk with others facing similar challenges. Group members suggested structuring her daily activities, and encouraged him to simplify the steps. When his children started to offer advice, Kevin struggled with guilt; he wondered whether he was doing enough for Linda. His doctor suggested he see a psychologist to help cope with his emotions and the stress of caregiving. This helped him continue to manage Linda’s care while acknowledging his own need for support and assistance.

Apathy
Apathy is among the most challenging symptoms for family and professional caregivers to manage. Effective interventions are individually tailored, rely on environmental strategies, and are delivered with understanding and patience.

Support Positive Approaches
• Reframe apathy as brain-based rather than the result of stubbornness or defiance.
• Develop individualized activities based on needs and interests that motivate and direct the person: spiritual, emotional, physical, nutritional, intellectual, and social. Follow the schedule consistently and adapt the level of difficulty of activities
as abilities change.
• Check your emotions continually and try to maintain a positive tone. People with FTD may have difficulty understanding speech but understand tone of voice and non-verbal communication. Anger and annoyance impede engagement and task
performance.
• Practice patience.
• Plan extra time for activities.
• Remember, you cannot change the person with FTD. Concentrate on modifying the environment and the intervention.
• Provide emotional support for family caregivers struggling to engage a loved one. Many feel anger over apathetic behavior, or feel they “aren’t doing enough” for the person with FTD, which adds to caregiver stress.

 

“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