I recently had the good fortune to view an amazing new documentary, Sue’s Story. Sue Berghoff, a Morgan Hill resident, was diagnosed with Lewy Body Dementia a few years ago. As she recalls in the film, she felt sorry for herself for a little while, then decided that she had to take action. What she and her husband, Chuck, did next has inspired many people around the world.
We learned that Lewy Body is named after Dr. Lewy who discovered this type of dementia. We learned that it affects one’s ability to make decisions and to find the right word in conversation, and it can cause visual hallucinations. It is devastating for patients and families alike. There is currently no cure.
The documentary I viewed last month was made by local writer and filmmaker Robin Shepherd and colleagues at 152 West Productions. It features highlights from “Pizza in Paradise,” as well as the doctors and scientists who are working on better diagnosis and treatments. Sue and Chuck were present to answer questions and share their journey.
To learn more about the progress being made by The Sue’s Story Project to increase awareness, caregiving resources and research funding to find a cure for Lewy Body Dementia, visit thesuesstoryproject.com.
This whole experience has inspired me to think about other needs of people with dementia. Lower-cost in-home care is one that comes to mind. It is impossible for some families to pay the high hourly costs as well as the minimum hours required by some home care agencies. If one is low-income, there is a program that provides free care, but it is limited and does not provide evening care, help with medications or transportation, and if one does not meet the strict income and asset requirements, the for-profit companies benefit.
If out-of-home care is eventually required, that is another serious problem. Assisted living facilities offer no accommodations for those with limited means, and residential care homes cost thousands of dollars per month.
I would truly love to see the day when more of these facilities, including nursing homes, are non-profit. And, yes, I fully expect to be considered naïve for this wish, yet Live Oak Adult Day Services is a non-profit agency, as are many other senior service programs. Our seniors and family members all deserve quality, affordable, care and assistance when dementia robs them of the ability to fully participate in our communities.
Cheryl Huguenor is the program director of Live Oak Adult Day Services in Gilroy. For information, visit liveoakadultdaycare.com.