To raise awareness of Lewy body dementia and explore caregiving for her husband artist Nicholas Zann, Mary Lou Falcone wrote the book “I Didn’t See It Coming: Scenes of Love, Loss and Lewy Body Dementia.” This New York Times article is about Ms. Falcolne, a publicist who is taking on a final client — herself. Excerpt from the article: “Even when she knew that she had to write about Lewy body dementia, which the pitcher Tom Seaver and the actor and comedian Robin Williams also suffered from, she was initially determined to leave herself out of the narrative. Her first draft of the book read more like a disease awareness pamphlet. Friends and early editors told her that no one would care about Lewy body dementia unless they first cared about her. So she rewrote it, beginning with her childhood and continuing, in exacting detail, even including a log of what it was like to care for Zann at the end.”
Category Archives: LBD
Lewy Body Dementia Caregiving Symposium (Hybrid) – Oct 14, 10am-2pm PT – Register now!
Stanford’s Lewy Body Dementia Research Center of Excellence and Brain Support Network are co-hosting this Lewy body dementia caregiving symposium. This is a hybrid event — some attending in-person on Stanford’s campus and many attending virtually.
Date/Time:
Saturday, October 14, 2023
10am to 2pm PT (with a break for lunch – no speakers)
Space is limited, so please register now!
There are two ways to join — virtually (online) or in-person at Stanford.
VIRTUAL REGISTRATION IS NOW OPEN!
Who should attend? Everyone is welcome — family caregivers, home care aides, healthcare professionals, anyone in the community interested in learning how to cope with Lewy body dementia, PD dementia, or dementia with Lewy bodies.
Virtual Attendance:
$10/each
$20/each – “pay-it-forward” ticket for yourself and sponsor a ticket
Is $10 is a financial hardship? Please let us know and we’ll provide a code for a free ticket.
Do have the financial means to sponsor someone else’s attendance? Please choose the “pay-it-forward” ticket level ($20). Or, you can donate directly to Brain Support Network, with a note that the contribution is earmarked for event scholarships.
Deadline to register for the virtual symposium:
Saturday, October 14, 2023, 10:30am PT
IN-PERSON REGISTRATION IS NOW OPEN!
Location:
Stanford Center for Academic Medicine
453 Quarry Road, Palo Alto, CA 94304
Doors Open: 9:30am
Parking is free and plentiful
Lunch is included
Who should attend in-person? We welcome those who are caring for a family member or friend with Lewy body dementia, Parkinson’s disease dementia, or dementia with Lewy bodies.
In-person Attendance:
$20/each – includes lunch
$40/each – “pay-it-forward” ticket for yourself and sponsor a ticket
Is $20 is a financial hardship? Please let us know and we’ll provide a code for a free ticket.
Do have the financial means to sponsor someone else’s attendance? Please choose the “pay-it-forward” ticket level ($40). Or, you can donate directly to Brain Support Network, with a note that the contribution is earmarked for event scholarships.
Deadline to register for the in-person symposium:
Thursday, October 12, 2023, noon PT
(We need time to order lunches for attendees)
Visit a resource table with information from Stanford Neurology, Brain Support Network, Family Caregiver Alliance, and the Lewy Body Dementia Association. Stanford staff can tell you about research studies underway for which you or your family member may be eligible.
Worried about covid-19? The room is fairly spacious, with probably 4-feet between chairs. Some of the organizers will be wearing masks. Masks are not required but recommended. If you are still concerned, register to attend virtually!
Afterwards, visit the historic Stanford Cactus Garden, which is a short walk from the Center for Academic Medicine.
PROGRAM
Our first speaker is Kathleen Poston, MD, Stanford. She’ll give an overview of Lewy body dementia — symptoms, diagnosis, and treatment.
Next up is Christina Irving, LCSW, Family Caregiver Alliance. She will discuss communication challenges in the context of dementia and hallucinations/delusions.
After the lunch break, we’ll feature a panel of LBD caregivers. Some of the caregivers have already lost their loved ones, and the diagnosis of LBD was confirmed through brain donation. Many of the caregivers are members of Brain Support Network’s Lewy body dementia caregiver support group.
OTHER DETAILS
Within a few weeks of the event, we will email everyone who registered a list of resources from Stanford Neurology, Brain Support Network, Family Caregiver Alliance, and the Lewy Body Dementia Association.
The symposium will be recorded. We will share a link to the recording with everyone registered.
Questions? Please email Brain Support Network.
JOIN US! SPACE IS LIMITED — REGISTER TODAY!
“Effectively Managing Medical Appointments” for Lewy Body Dementia – June 22 Webinar
Our friends at the Lewy Body Dementia Association (LBDA) are conducting a webinar soon:
Effectively Managing Medical Appointments for Lewy Body Dementia
June 22, 11am PT
Host: Lewy Body Dementia Association
Considerations in Caregiving (from a local support group member)
Local support group member June is a practicing nurse. And she’s been a hospice volunteer for many years. Her father recently passed away; his clinical diagnosis was Lewy body dementia. His main symptoms were parkinsonism. Her mother was the primary caregiver. The mother was able to keep the father at home. Daughter June provided care and some oversight. Her father died in February 2023. He was on hospice since early January 2023. June recently shared some “considerations in caregiving” which apply to caregivers of those with Parkinson’s and all the atypical parkinsonism disorders.
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Local support group member Lyn’s thoughts on what he did well as a caregiver
Local support group member Lyn Preuit’s dear wife Wendy died about two years ago, after coping with Parkinson’s Disease (PD) for twenty years. We’ve stayed in touch. Recently, he attended a local PD caregiver-only support group meeting to share his thoughts about what he did well and what he could have done better. As you can imagine, his remarks were well-received. Though his wife had Parkinson’s disease dementia (aka, Lewy body dementia), his advice applies to caregivers of all diseases. (By the way, Wendy’s diagnosis was confirmed through brain donation, which Brain Support Network helped arrange.)
Robin
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Keep coming to the group. You pick up more information than you realize listening to another caregiver’s problems and solutions. Even more important, you realize that you are not alone in your caregiving situation. The emotional benefit is incredible when you share your outrageous problems with others who are fighting similar battles.
Find something to do that is just for you. You need it to sustain yourself over the long haul. Give it priority for a meaningful part of each day. Make it mandatory. You need to have something you can feel good about for yourself when the disease mercilessly grinds away the things you enjoy with your Parkinson’s person. Sacrificing yourself is not a long-term solution.
Live in denial. The emphasis is on live. Do things together. Obviously, some things are no longer feasible. We gave up skiing. But we camped, kayaked, and walked long trails. We traveled to Europe, Mexico, Canada, and the western states. We lived winters on a beach in Baja. We lived.
Exercise together with your Parkinson’s person. I helped my wife as we took long walks together. It gave her a sense of accomplishment, gave her invaluable exercise, and it made both of us feel better to do something active together. Nearly always, I was amazed how far she could walk with just a little help balancing. Even near the end, a walk around the block provided hard to find satisfaction.
Get help from a caregiver as soon as you can and before you think you can accept it. You need, and you deserve, some respite. There are some wonderful people out there to help you. We had a hard time accepting the idea of a stranger coming into our home and it took several tries before we found the right person. But looking back, I couldn’t have done it without our help. Certainly, any particular day I could have managed. But over the long haul, the very, very long haul, having help made a huge difference.
Accept that you will make mistakes. Accept that you will do things that you will regret. Understand that doing your best is more than can be expected of anyone in this situation.
At the end, Mission Hospice was wonderful.
Grief. Despite knowing her death was coming, my grief was more severe and lasting than I could have imagined. Withdrawal from caregiving has been disconcerting. I think it is reasonable to say that I have PTSD from caregiving. I am glad that I survived the battle and I am comfortable that I did the best I could.
Which begs the question: What could I have done better?
I wish I had been better able to ask her friends to visit, to have organized that effort, and to have explained that her dementia was really just very slow thinking and that her memory was largely intact. Dementia scares people away and people see it as an excuse for not visiting.
I wish I had better understood how frequently doctors over-prescribe medicine and that I had always been more vigilant for side effects. Mirapex was a popular drug early in our journey, but its unexpected side effects were horrific and withdrawal was brutal, made possible, strangely, by cannabis cookies. Even near the end, I was ambushed by a sedative that had the contrary effect of making her so agitated that one day I came to the support group meeting with a bleeding scratch on my forehead.
Sadly, over the many years of struggle against Parkinson’s Disease, there were some times that I wish I hadn’t yelled at her. But I still don’t know what else I could have done.
Lyn Preuit 08/25/22