In July 2013, CAREGIFTED sent Barbara to Eastport, Maine. Eastport is indeed a special place—billing itself as “the easternmost city in the US,” Eastport is a downeast rustic fishing community with charming historic storefronts that seem transported directly from an era past. Unfortunately, due to logistical constraints, CAREGIFTED will no longer be offering getaways to Eastport. However, we are delighted that we could sponsor a getaway for Barbara to experience the charm of Eastport for herself. Read below for selected excerpts of Barbara’s thoughts on being a long-term family caregiver, and her experiences while on her getaway. Please learn more about Barbara and her getaway by checking out her blog here!
What does a typical day look like for you?
We get up at 6:30 am most days, but I am up at 4:45 am on the days our son David has his community (buzz word for “real”) job at a local department store, which is one or two days a week. The other days he’s at a sheltered workshop; we have to drive him, as there is no public transportation.
My husband’s 70; I’m almost there, but we’re rarely alone as a couple. . . . In some ways, life is easier now—my husband’s retired, and we’re no longer dealing with major meltdowns and constant behavior modification. In other ways, it’s harder for us to go away—in the past, we’d used college students (special education and speech therapy majors) [as sitters], and transportation wasn’t an issue (he took the school bus). Now, we need to find reliable adults who either don’t have jobs, or who have enough flexibility in their jobs to be able to take him to and from work.
What’s the hardest part about caregiving that nobody sees?
That it will never end. We live in Pennsylvania, where the only thing being funded is something called “lifesharing,” which means, in essence, adult foster care. How could we place our own child, who is open, trusting, and not very verbal, in someone else’s house?
One of the other parts, which this vacation brought home to me, is that he’s a wanderer. When we’ve gone on holiday, to museums, gardens, etc., he doesn’t stay with us (believe me, we’ve tried to fix this), so one of us is always running around trying to find him, and something that should be fun turns out to be stressful. I so enjoyed going through the Roosevelt cottage and grounds at Campobello because I didn’t have to worry about where David had drifted off to.
What about caregiving brings you the most pleasure?
Seeing other people respond positively to him. Pennsylvania also doesn’t provide respite care, so to go away, I have to lean on my friends. Joyce, who filled in for us this time, took David to the movies, along with her husband and son. She was going to sit next to him, but her son, Matt, said, “No, go sit with Dad. I’ll sit with Dave.” This filled her with pride at her son’s big heart, as well it should. My husband has often said that he thinks David was sent here to teach us all compassion.
Describe a moment during your getaway when you felt the most relaxed or at ease.
The minute we walked onto the deck of the apartment and I saw the spectacular view, every muscle in my back relaxed, and I went, “Aaah.”
How has your getaway changed your perspective on life and your role as a caregiver?
We’re in it (caregiving) for the long run, and I’d learned many years ago that we’d both need breaks (before retirement, my husband travelled a lot for business; now, I’m the one more likely to be away for a few days at a time. But we also learned that we needed to go away together, to remind ourselves about why we’re still a couple. . . .) So I wouldn’t say this getaway changed my perspective, but rather, that it reinforced how necessary getting away is.
CAREGIFTED would like to thank Barbara for allowing us to share her perspectives on caregiving and her getaway. We know that for long-term family caregivers, respite is a necessity, and we are honored to serve Barbara and the entire caregiving community.