Ready for what lies ahead
Jim’s reinvigorated spirit gave him the strength to carry on after that through a series of setbacks that were hard on Judy. It wasn’t easy for either of them. But Jim no longer had a sense that he was failing, either as a loving partner or as a funeral preparer.
Jim has even found a silver lining of sorts, if such a thing can emerge from watching your spouse vanish. In his research into Lewy body dementia, he’s become sort of an authority on the topic. His knowledge is so well respected that Pathstone has asked him to give presentations about the disease to the staff.
Beyond that, Jim has begun an informal support group for families dealing with Lewy body dementia. There are support groups out there for Alzheimer’s disease and general support groups for aging parents or dependent spouses, but nothing specifically for Lewy body. Given its unique symptoms, Jim says it generally is much more helpful to talk to people who have gone through the same things he has.
“I revised my slide presentation, made it more interactive, used some of my teaching skills to keep it lively,” Jim said. “They sent me the evaluations. The majority of people checked it off as one of the highlights of the day. A lot more people were learning about Lewy body. I began to realize that maybe this is part of my identity crisis. Maybe I need to be doing more to get the word out to raise money. Maybe I need to be doing more.”
In the last few months, Judy’s physical condition has worsened. A few weeks ago, they began hospice care for her. She has lost a lot of weight. Today, she’s hovering around 80 pounds but she’s still eating, still drinking Ensure.