As a long distance caregiver to my father, mother and mother-in-law, I've been a veritable emotion machine. I've felt frustration, isolation, exhaustion, impatience, anxiety, stress, anger, self-doubt, sadness, and guilt. Granted, I've also experienced devotion, intimacy, and purpose.
These potent emotions aren't reserved for long distance caregivers. I'm sure my brother, who was the in-town adult child, had similar feelings. I'm also sure he wished we could switch places—he be the one to travel to see Mom, and I be the local one.
I was relieved I wasn't. I was spared the scutwork, the in-the-trenches caregiving, chauffeuring, doctoring, and other day-to-day tasks. I was as much of a hands-on caregiver as I could be. My car had a 200-mile workout every other weekend traveling between states. There was plenty to coordinate and orchestrate that allowed my angst level to be elevated. I still fretted: was anything going on with Dad, Mom or my mother-in-law that I wouldn't have missed had I been there? Was I doing enough? Could I do a good job from afar?
Many sons and daughters of aging parents, especially only children, wish they had siblings to share the caregiving load. But that load isn't always (usually) evenly split and everyone doesn't play so well in the sandbox.
Just as the “Mommy Wars" had stay at home moms and working moms judging each other, there were times I felt like I was waging the “Sibling War": long distance caregiver vs. the home-base child. My friends tell me the same. The contest seems to be about who is doing more and who isn't pulling his or her own weight. That can escalate into who cares more for Mom and who is the better and more giving child.
Even in the closest of families, who does what and who lives where can cause tremendous friction and even fall-out. When you care from afar, geography creates other kinds of stress.
As long distance caregivers, we may feel that we're in the hot seat, being judged for our devotion; it can make us defensive. Of course, you can have a sibling who doesn't pitch in regularly who lives in town. Living nearby doesn't necessarily mean more involvement. And today, caring from afar can give you a real sense of what's going on via technology like sensors, computers and smartphones that can connect you to what's happening in the home of the person being cared for.
For me, one of the hardest parts of being a long distance caregiver was feeling torn—when I was with my father, mother and mother-in-law, I wasn't with my own family, and when I was with my own family, I was not with them. I still had a husband and child at home, in another state, and weekly work deadlines.
When there was an emergency, I hightailed it to be with them. There is no long distance for those situations.
My 14 years as a long distance caregiver has given me some insight. Here are my pearls of wisdom:
Don't cede the wheel. Even though you're not right there does not mean you get to check out. Take advantage of technology, care coordination programs on the web and Facetime. If your parent needs help with the billing, you can do it online, as well as order groceries or other items via the web.
Not right there? Offer to research housing options, financial advisors or adult day programs for siblings who have more caregiving responsibilities. Make calls and do web legwork for services in your parents' community or hire an aging life care specialist (formerly known as a geriatric care manager) who knows the resources in their area.
Ask them what they need most. Financial help? A break so they can get away or even sleep? If you haven't heard of respite care now's the time to bone up.
Try to anticipate an issue or change of circumstances. Know your options and get a support system in place where your parent lives. There are specific handbooks for long term caregivers through the Family Caregiver Alliance, the National Institutes of Health and the Alzheimer's Association
Just do what you can. I didn't want to have any regrets about not being attentive or responsive enough. And, that philosophy has helped make their loss less more bearable.
Share in the comments - what have you found are the hardest parts about being a long distance caregiver? Do you have any strategies or tips?