In an atmosphere of caring and sharing, we talked about social isolation at our October meeting. Whether we live alone; with a spouse or significant other; with family; or in a group setting in a senior facility, we all seem to experience feelings of isolation and loneliness.
One of us who recently moved is making every effort to be friendly and meet people, happy to have just found a new church in her new neighborhood. Another is experiencing significant loneliness since moving to a “magnificent” facility, opting to eat lunch and dinner alone rather than in the facility’s dining room where she finds the other residents to be very cliquish. Someone who recently sold their house and moved with her husband to a group setting has experienced this same cliquishness. She cautions anyone thinking of making a similar move to be sure to research really well.
Another of us who lives in a multi-generational home with her spouse, daughter, son-in-law, and grandson says it’s difficult to be a part of a group when you can’t physically manipulate the space too well. She feels excluded in an environment that feels inclusive, adding, “Your family thinks you’re included if you’re in the same room, but that’s not always the case.” Someone else concurred; her husband and 19 year old daughter have so much energy, when the three of them are in a room together, she often feels left out.
As a group, we don’t go out as much or entertain as often as we used to pre-Parkinson’s. It’s an effort to get out of the house for social gatherings. We feel anxious. We need extra time to get ready. We worry about our meds not working the way we want them to. We think about finding a place where we can take another dose within the short window of time we have for our meds to be effective. We worry about having enough energy to get us through the duration of the event and the physical discomfort of being in a car.
When we are out, we’re conscious of having someone nearby who can give us a hand if we need one, although we don’t like to ask for help. We prefer to do things on our own, despite being offered assistance and knowing we could probably use a little help now and again. Being around people requires energy. Many of us wrestle with exhaustion the following day or two. Yet we generally feel better after going out no matter how anxious and apprehensive we were beforehand, or tired afterward.
Social isolation and loneliness can be compounded by other circumstances that further limit our mobility. Many of us have had knee, hip, shoulder, or neck injuries, in some cases requiring surgery. Some of us no longer drive. One of us recently had a longtime companion pass away. She hears from his family only occasionally. A twenty-year Parkinson’s veteran among us has lost friends over the years who “couldn’t be bothered with her slowness,” and her soft voice makes it difficult to be heard. Another diagnosed four years ago feels isolated and lonely despite living in a major city where “everyone knows you on the block,”and she once walked everywhere.
Our feelings of sadness and loneliness are hard on our families as well as ourselves. We recognize that. We also recognize that geographic distance, full-time jobs, and their own health issues limit how much family and friends can offer in the way of help. We are fiercely independent and hold tight to that independence. One of us finds inspiration from her father-in-law’s words: “Never say no to someone who invites you somewhere.” Whenever she hesitates to do something social, she remembers how he always pushed himself to stay involved. Another reminds herself, “If you want to have a life, you have to make it.” That will look a little differently for each of us.
Thank you to everyone for the generous sharing of your thoughts and experiences.