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,

“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.



* 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.




Excerpts from
Partners in FTD Care
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 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
• 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:


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



“10 Things to Locate Before Your Parent Has a Health Crisis”

This good article from last summer is about the ten things adult children should locate before a parent has a health crisis.  The ten things include:

  • Medical records
  • Health insurance and life insurance information
  • Advance directives
  • Banking information
  • Investment information
  • Deeds and titles
  • Safe deposit box
  • Hidden valuables
  • Wills, birth certificates, marriage licenses
  • End-of-life decisions

The full article is copied below.



10 Things to Locate Before Your Parent Has a Health Crisis
Knowing where information is kept can be vital in an emergency
By Candy Arrington
July 14, 2017
Next Avenue

As long as aging parents are handling their own finances and managing day-to-day living at home, adult children don’t think much about needing to know the location of their parents’ important documents. However, a parent’s unexpected health event could precipitate an immediate need to get your hands on key information and secure valuables.

Following her fall and emergency surgery, my mother insisted I go to her house and retrieve her jewelry and documents. Thankfully, she was coherent enough to provide directions. But that isn’t always the case when a parent is hospitalized. That’s why now, before something happens, is a good time to talk to aging parents about what you may need to get someday.

What You Need to Find
Initially, it may feel like an invasion of their privacy. But, as I explain in my book, When Your Aging Parent Needs Care, ask for locations of the following:

1. Medical records – When a health incident occurs, doctors will ask about existing conditions, previous surgeries and current medications. A spouse (if your parent has one) probably knows these answers, but it’s good for someone else to have the information in case both parents are ill or injured.

2. Health insurance and life insurance information – Find out where your parents keep health insurance information, including any supplemental policies, and locate their cards. Also, look for life insurance policies and make sure the premiums are up-to-date.

3. Advance directives – Your parent may have a living will, DNR (Do Not Resuscitate) order, or health care power of attorney (POA), which is different from a general power of attorney. During the last years of my mother’s life, frequent health crises prompted me to keep her healthcare POA and DNR in my car.

4. Banking information – If a parent is suddenly incapacitated, bills still need to be paid. Learn where your parents bank, and get their account numbers, online access codes, debit card PINs. Also, find out how their bills are paid (checks, auto-draft, paid online). Ask your parents to consider having your name, or a sibling’s, placed on their bank accounts so someone else has the ability to make payments and manage the accounts.

5. Investment information – Following my mother-in-law’s health crisis and death, we spent days digging through mountains of papers at her home, searching for a name and phone number for her financial adviser. Eventually, we discovered he’d left the company. It’s important to know not only the location of parents’ investments, the name of the adviser and contact information, but also to be aware of fees, required distributions and withdrawal penalties.

6. Deeds and titles – You may think the deeds and titles to your parents’ property are in that old wooden cigar box on the top shelf of your dad’s closet. But what if they aren’t? Take the time to find out the location of deeds to houses and land and titles to cars and recreational vehicles. A health crisis may precipitate a sudden move to a care facility and the need to liquidate assets.

7. Safe deposit box – While not everyone uses safe deposit boxes, your parents may have one. Learn where, locate their keys, and ask about the procedure for accessing the box. A parent may have to place your name on file in order for you to gain access. Check with the bank.

8. Hidden valuables – While most people don’t keep money in the mattress anymore, some still pick bizarre places to stash cash and jewelry. I’ve heard these examples from people I’ve interviewed: A woman taped cash to the back of her vanity mirror and hid her diamonds in the sugar tin. A man buried over $60,000 in his backyard in coffee cans. Thankfully, his wife saw him. After his death, his grandchildren enjoyed a treasure hunt with metal detectors, but the scenario could have been very different if knowledge of his secret stash died with him and the property had been sold. If your parents don’t want to divulge the location of their valuables, ask them to make a list and keep it with their wills.

9. Wills, birth certificates, marriage licenses – Ask your parents about their wills and where they’re located. If they don’t have them, or haven’t updated them in years, initiate a consultation with their attorney and offer to take them, to make sure they go. Discussing wills may seem morbid while parents are healthy, but dying intestate (without a will) lengthens the probate process and may spark family squabbles. Also, locate birth certificates, marriage licenses and veterans information.

10. End-of-life decisions – Death is a subject few want to discuss, but you may be surprised to discover your parents have already made plans. My father’s medical crisis resulted in a terminal cancer diagnosis. A few weeks later, he arranged for and “bought” his funeral. It’s a hard conversation, but ask your parents about their end-of-life preferences.

Approaching Tough Topics
Often, parents are hesitant to discuss personal matters. Pride, stubbornness, suspicion and fear mingle to produce defensiveness and resistance.

Try using someone else’s situation as a springboard for discussion. If a friend’s parent had a health crisis and the friend struggled to handle it because of lack of information, mention this to your parents. Once the subject is broached indirectly, your parents may be more forthcoming with information than you expected, making your job easier when a health crisis arises.

Candy Arrington has written hundreds of articles on various topics in outlets ranging from CountryLiving.com, The Writer, Writer’s Digest, Healthgrades.com, and Focus on the Family. She is a freelance editor and enjoys speaking and teaching at conferences. Her books include When Your Aging Parent Needs Care: Practical Help for This Season of Life (Harvest House) and AFTERSHOCK: Help, Hope, and Healing in the Wake of Suicide (B&H Publishing Group).