Ivan's medical expenses

In March of 2020, my younger and only brother Ivan, was diagnosed with Early Onset Frontotemporal Dementia (FTD), at the age of 58. FTD is a rare form of Dementia that affects younger people, with onset between the ages of 40-65. This disease differs greatly from Alzheimer's and "traditional" Dementia, and it is currently not well researched.

Ivan maintained the same career for over thirty years; however, due to his illness he became unable to work the same year he was diagnosed. Ivan's wife is managing her own serious health issues while also caring for her elderly mother. She and their adult daughter provided in home care for Ivan the best they could; however, due to the nature of the illness, they became unable to continue home care. In January of 2022, after researching and being turned away by several Memory Care Centers who were not equipped for a person with FTD, they found an extraordinary facility where Ivan has been residing.

Upon visiting him, I found that all the staff know and love him. He is by far the youngest person there and the only one with FTD. Ivan is in the advanced stages of the condition now and needs help with eating, bathroom and hygiene, dressing, and each day he needs even more support. The staff are very professional and it is a blessing that he has been able to live there.

Sadly, as his need for more care increases, so do the costs, currently around $7,000 per month. The retirement/disability money Ivan has earned is running out, and our family is not in a position to keep up with the skyrocketing fees. The only option we may be left with is to move Ivan into a Medi-Cal funded skilled nursing care home. Although this may be a far more economical option, it is both difficult to find facilities that accept people with FTD, as well as very disorienting for the person with FTD to be moved. It is clear that Ivan has built relationships with the staff at his current Memory Care home, and the staff have familiarized themselves with both FTD and the nuances of Ivan's instance.

My brother was an amazing drummer who had opportunities to go professional while very young. Instead, he chose to stay close to home and raise a family. He played in a local blues band for many years. Although the behavioral symptoms of his illness prevent him from having a drum set where he resides, he is encouraged to use his drumsticks to play drums safely on different surfaces of the facility. Ivan can still play a killer version of "Wipe Out" solo, and he enjoys "performing" for the other residents and staff. Ivan has always been very creative, and is able to use the facility's art room/art supplies to go back to making art. Ivan has done many colorful pencil drawings over the years.

We do not know how long it would take to locate him a more economical Memory Care Facility; however, it is my hope that money raised through this campaign will enable him to remain where he is now, comfortable and safe. The money will be used for his medical and daily living expenses; it will help lighten the financial burden on our family so we can make the rest of his life as secure as possible. With the life expectancy of FTD, Ivan may live up to five more years. As previously mentioned, FTD is quite different from Alzheimer's and "traditional" Dementia and the research is limited. In recent years, the actor Bruce Willis' family went public with his condition, and we hope more research will happen soon. Meanwhile, there is currently no known cure nor treatment available for Ivan's disease.

Please, donate whatever you can to this cause. Any amount is a generous act of love and support. If you are unable to contribute monetarily, please share this page with your community. Thank you for your time.