It was eight years ago that Parkinson’s came knocking on our door. This uninvited guest very quickly became the center of our conversations, the subject of our Google searches, and the family secret we didn’t discuss in public. It took three years after my husband’s diagnosis before he was willing to tell anyone other than our children. I was sworn to secrecy even though, by the look on friends’ faces, they suspected what we weren’t saying. I became a master of suppressed emotion.
Parkinson’s isn’t satisfied with only affecting one member of the family. It wants to control the whole family, and in accomplishing its objective, it always wins. Usually, the spouse becomes the primary caregiver — ready or not.
Fortunately, there is a remedy for the loneliness, endless questions, and feeling that the careperson is alone on an island of exhaustion, fear, and despair. It is a caregiver support group. Many communities, many cities have groups available for weekly meetings: some in person, some virtual.
For me, the Parkinson’s Association of Santa Barbara (PASB) Online Caregiver Support Group that met via Zoom on Thursdays at 2:30 p.m. become a lifeline. Until I joined, I had no idea how much I needed it or the significant role the compassionate and knowledgeable facilitators and members would come to have in my life.
At this moment we have openings in the group and hope that this information will get passed along to those who might be looking for a group or who may not even know how much they need one. Becoming part of this group, finding community and emotional support, has become an unexpected gift of Parkinson’s. I am so grateful I received it.
For more information go to mypasb.org or call (805) 683-1326.
