2021 Brain Support Network Caregiver-only Support Group Meeting Dates

Since 2004 (17 years!), we have convened nine support group meetings each year for caregivers of those with Lewy body dementia (LBD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal degeneration (CBD), and atypical parkinsonism.

These are separate — yet simultaneous — meetings for each disorder, though the PSP and CBD groups are usually together. Among all of three simultaneous groups, attendance is 20-30 total.  We welcome family/friend caregivers living in Northern or Central California.  Contact us if you’d like to be added to the meeting reminder email list.

Of course during the COVID-19 pandemic, our groups are meeting virtually.  Most participate with video, but it is perfectly fine to join by phone-only.

The discussion is led by caregivers who have lost their family members to these disorders. In most cases, the family member donated his/her brain and the diagnosis has been confirmed. (Brain Support Network can assist your family in making brain donation arrangements.) Discussion leaders include:

  • LBD: Dianne, Sharon, Alexa, Cristine, and Lynn
  • MSA: Candy, Barbara, Karen, Jan, and Doug
  • PSP: Cristina, JD, and Robin
  • CBD: Dick, Mindy, and Mark

These caregiver-only support group meetings are held on Sundays from 5pm to 7pm. The dates for our 2021 meetings are:

  1. January 24
  2. March 14
  3. April 18
  4. June 6
  5. July 18
  6. August 29
  7. October 3
  8. November 7
  9. December 5

In selecting these dates, we have avoided as many cultural events, sporting events, and holidays as possible.

Please put these caregiver-only support group meeting dates on your 2021 calendars now.  An email requesting RSVPs will be sent out a week or so before each meeting. RSVPs are always due by noon on the Saturday (one day) before each meeting.

All family/friend caregivers are invited:  primary, secondary, those giving hands-on care, and those managing care.  Newcomers, casual visitors, and longtime attendees are all welcome!  Former caregivers–those whose loved ones have already passed away–regularly attend.  Former caregivers have been through it all and are invaluable resources to those learning to cope.  (Our group is NOT intended for professional caregivers.)

If you are an active caregiver with a loved one at home, consider asking for a “respite care grant” from your county’s agency on aging or from your local caregiver resource center (see caregiver.org/californias-caregiver-resource-centers).  Such grants pay for a caregiver to be in your home while you attend support group meetings.  The Alzheimer’s Association (alz.org/norcal) also offers respite grants for those dealing with dementia.

We occasionally have guests.  Guests have included a family consultant from Family Caregiver Alliance, a board member of the Lewy Body Dementia Association, and a board member of CurePSP.

We have over 450 members now, with attendance of 20-30 at caregiver support group meetings (among the three simultaneous group meetings).  Roughly speaking, of the 450 members, 50% have an LBD connection, 30% have a PSP connection, 18% have an MSA connection, and 2% have a CBS/CBD connection or Atypical Parkinsonism connection.  (I believe we have the largest PSP, LBD, and MSA local support groups in the US.) If you have suggestions on how we can get the word out about our group, let me know!

We look forward to seeing you at some meetings in 2021!

By the way, if your family member with a neurological diagnosis of MSA, PSP or CBD would like to meet virtually with others, let us know.  We will try to arrange this.

Facebook’s Giving Tuesday match program – Help support our efforts at BSN (12/1/2020)

Brain Support Network is participating in Facebook’s Giving Tuesday match program, where $7 million of donations given through Facebook will be matched dollar-for-dollar, DECEMBER 1 ONLY. This match begins at 8am EST-5am PST) and will run until the matched funds run out. This means that if you donate to Brain Support Network through Facebook on December 1, your donation could be DOUBLED, but you must act quickly.

 
Brain Support Network focuses on three activities:
  1. Brain Donation. We promote and facilitate brain donation for most neurological disorders and healthy “controls.” At present, post-mortem brain tissue analysis is the *only* way to confirm a diagnosis of Lewy body dementia (LBD), Parkinson’s Disease (PD), Frontotemporal Dementia (FTD), Alzheimer’s Disease (AD), vascular dementia, Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), and Corticobasal Degeneration (CBD).
    Brain Support Network has helped over 800 families accomplish brain donation in the US. Of these families, *half* received a confirmed diagnosis that was different than the clinical diagnosis.
  2. We manage a local support group that focuses on the four atypical parkinsonian disorders (LBD, PSP, MSA, and CBD). We hold support group meetings for caregivers in Northern California, convening nine times per year in San Mateo, California.
  3. We track the research on the atypical parkinsonian disorders and maintain a website that refers to the best resources that we’ve found for caregivers. Our Facebook page posts lots of research on Parkinson’s Disease, Alzheimer’s Disease, Frontotemporal Dementia, and the atypical parkinsonian disorders. Plus we share worthwhile articles on caregiving for neurological disorders.

The MSA Coalition 2nd Patient/Family Conference of 2020 (October 23-24)

The MSA Coalition is holding a second patient/family conference this year on October 23-24, 2020. This second conference is in conjunction with Dr. Thomas Chelimsky and the team at the Medical College of Wisconsin. The conference is free. Robin Riddle with Brain Support Network will be speaking about the value of MSA brain donation. Register for the event here.

“Uncertainty fuels anxiety” (Washington Post)

The uncertainty many of us feel about the pandemic reminds me of the uncertainty many of us face in caregiving situations.  We don’t know what’s going to happen next.  According to this recent Washington Post article, uncertainty fuels anxiety and can leave us exhausted.
Here’s an interesting excerpt about being flexible in how you cope:
“[The] people who cope best with uncertainty are the ones who have a more flexible coping style.  … ‘Sometimes fixing the problem is good, sometimes being proactive is good, sometimes managing your emotions with self-care is good, and in some cases even avoidance can be fine.  But doing the same thing regardless of the situation is not going to work.  In uncontrollable situations, focusing on what you can control, like your reactions, will be best.'”
A few strategies are shared, including:
  • taking a day at a time
  • breaking down the problem into its component parts and try to find ways to deal with those specific parts
  • cognitive behavioral therapy
  • viewing uncertainty as a challenge, rather than as a threat

Health
Uncertainty fuels anxiety, causing your mind to conjure up scary scenarios. The pandemic can magnify the angst.
By Christie Aschwanden
Washington Post
September 12, 2020 at 7:00 a.m. PDT

“Can Caregiving Cause PTSD?” (NextAvenue)

This is an interesting article from NextAvenue (nextavenue.org) on post-traumatic  stress disorder (PTSD) being caused by caregiving.  Advice given to family caregivers includes:
  • Don’t put the brakes on your personal life and feelings.
  • Be aware of your thoughts and your feelings.
  • Take regular breaks, even a short walk or enjoying personal time alone.
  • Get some help, from an aide or respite care.
  • Have a healthy diet, get adequate sleep, get regular exercise, enjoy nature, and engage in pleasurable activities.
The full article is copied below.
Robin

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CAREGIVING

Can Caregiving Cause PTSD?
What experts say and what role the pandemic is playing

by Juana Poareo, Freelance Writer
August 21, 2020
NextAvenue

Kaci Smith, 36, recalls the gradual emergence of her PTSD symptoms about three years ago when she’d been caring for her mother at home following her mom’s 2012 stroke.

“It would be things like almost feeling like a panic attack,” says Smith, a Rochester, N.Y. teacher. “If she would complain of leg pain, I would think, ‘Oh, no. It’s a blood clot. We’re going to have to go through all this medical stuff again.’”

Smith, who stopped working when COVID-19 forced the U.S. into lockdown, has been a 24/7 caregiver for her mother during the pandemic and is on anti-anxiety medicine.

As the “Caregiving in the U.S. 2020” report from AARP and the National Alliance for Caregiving documented, being a family caregiver can be high stress. It can also, in some cases, bring on PTSD (Post Traumatic Stress Disorder), an anxiety disorder caused by trauma. PTSD symptoms typically range from flashbacks and recurring dreams to insomnia and poor concentration.

Researching the Caregiving PTSD Link

Exactly how often caregiving can lead to PTSD is unknown.

“There remains very little research or attention on PTSD among caregivers,” says Dr. Ranak Trivedi, an assistant professor of psychiatry and behavioral sciences at Stanford University.

But, Trivedi adds, “As clinical psychologists, we are also recognizing that chronic stress that is unrelenting — such as through caregiving — can lead to PTSD.”

Jennifer McAdam, an associate professor in the School of Nursing at Samuel Merritt University who co-authored a study about family caregivers of ICU patients, says more research needs to be conducted to establish the true impact of caregiver PTSD.

“It is difficult and challenging to get money to study families as this area is typically not considered a high priority in research,” McAdam says.

The Pandemic’s Effect on Family Caregivers

The pandemic may well be making PTSD among caregivers more common.

A recent Centers for Disease Control and Prevention (CDC) report said the rates of symptoms of anxiety disorder and depression, as well as serious consideration of suicide, have been much higher for unpaid family caregivers than the public in general lately.

PTSD symptoms can also emerge for caregivers when a person receiving care has a chronic illness or disability, like Smith’s mother.

COVID-19 has put a stop to in-person social interaction for Smith and her mother. Before the coronavirus spread, Smith’s brother would visit regularly. No more.

“It’s just made my world very, very small,” Smith says.

What Can Trigger PTSD for Caregivers

Whether you’re prone to develop PTSD due to caregiving depends largely on your emotional and physical resilience.

For example, if you suffered from anxiety or depression before caregiving, you’re more likely to develop PTSD symptoms than someone who doesn’t have those conditions. And if you struggled with trauma in the past or are suddenly thrown into a caregiver role without preparation, experts say, caregiving can lead to PTSD symptoms.

Life experiences can adversely affect caregivers, too, including their socioeconomic status, divorce or the death of a child or parent. The more unresolved loss or trauma, the more likely a caregiver will carry extra stress. That’s been true for Smith, who lost her father when she was 12.

“Part of my PTSD also is around abandonment. I think that’s why, with my mom, it [PTSD] definitely gets very triggered when it comes to her health,” Smith says. “She’s also been suffering from cardiovascular disease since I was ten, so even though I became a full-time caregiver at twenty-seven, her health has been something that we’ve been struggling with my whole life.”

Another potential factor for PTSD among caregivers: a lack of family and community support. According to a BMC Psychiatry article, reliable support can make the load more bearable for a caregiver under severe stress.

Advice for Family Caregivers

Navigating a whirlwind of emotions as a family caregiver can be draining. It’s all too easy to put the brakes on your personal life and feelings, but that’s unwise and could be unhealthy.

“Even if you feel like you don’t have time to do anything, be aware of your thoughts and your feelings,” Trivedi says. “Honor those and know that those are real and true.”

Taking regular breaks can help, too. Even a short walk or enjoying some personal time alone can be enough to recharge your batteries.

You may also want to look into getting some help, either from a home health aide or respite care. State and local programs may pay for this kind of assistance. And if the loved one you’re caring for is on Medicare, that federal program might cover this kind of support, too.

Trivedi says these services “often go unused because people don’t realize they can use” them.

A healthy diet, adequate sleep, regular exercise, enjoying nature and engaging in pleasurable activities can be useful, too.

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Juana Poareo is a freelance writer and blogger in New Mexico who specializes in writing about health. She has worked with HuffPost, Saatchi&Saatchi, OncoLink, MBLM and Ambrosia Treatment Center. Her website is JuanaWrites.com.