By Barbara Trainin Blank
It’s human nature to compare, to envy and to admire. So when I heard from a new friend that she had gone in to see her mother every 10 days (a distance of 220 miles) for several years, I was impressed.
After all, I had to traverse only 180 miles to see my mother, and “only” for about three years.
I was even more awed that her my friend’s sister had taken their mother into her home and cared for her for 14 years. My friend felt her visits were a way of “sharing the burden,” though, she added, “It wasn’t a burden. She was my mother.”
Maybe it was my own “fault” for getting into a remote-care situation, because I didn’t take my mother into my home. The “excuse” I gave myself then, and in retrospect, was that the professionals recommended that she stay in comfortable and familiar surroundings because of her dementia. But maybe I should have...
What also awed me was that, for the past two years, my friend had slowed down the pace of going to see her mother. But she never told her mother the reason for the decline in visits—she herself was ill and had a lot of doctor appointments.
Thinking about my friend and her sister, I asked myself: What reason did I have to complain? After all, during the years of taking care of my mother long distance, there had been a few other family and work crises, but I was in perfect health. I had ample energy. I was able to make the frequent trips between Harrisburg, PA., and New York City without great physical difficulty. It was exhausting, but doable.
Yet, going back and forth did take its toll. I was constantly in a mode of catch-up, and constantly wanting to be where I wasn’t. It was an emotional seesaw.
Moreover, support was limited. At the time—something that’s changed—the caregivers I knew in Harrisburg had family members who lived nearby. Most of the family caregivers I knew in New York—where I had grown up—had to travel to a different borough to visit a parent, but it didn’t involve suitcases and three-hour Amtrak trips. These included the friendly visitor who came to see my mother regularly, although she had to tend to an aging parent in another borough as well.
People would say of my situation, “That must be really hard,” but it was a theoretical thing for them. It was only later, for example, that one friend told me she couldn’t imagine doing what I did—that life was tough enough with her elderly father nearby.
The challenge of long-distance caregiving was one of the inspirations for my (co-authored) self-help elder care book, What to Do about Mama: A Guide to Caring for Aging Family Members (Sunbury Press, 2013). One challenge common to all caregivers, though, is the attempt to find a support group with others who understand what you’re going through. But that eluded me as well. I don’t know if there statistics about what percentage of caregivers are long-distance ones. But we can figure that with an estimate of 54-million Americans serving as unpaid caregivers to family members, there must be a lot of people doing it remotely.
Turns out I was the only person in that particular support group dealing with long-distance caregiving. Not that all kinds of caregiving don’t have their share of frustration—for one thing, long-distance caregivers aren’t bearing the total day-to-day, hands-on responsibilities for their loved one. I felt kind of isolated.
Sure, there were other caregiver groups, but this was the one comprised people closest to my background in general. Who had time to keep looking and also work and do what I was doing for my mother?
Ironically, I found the right support group—or framework for one—after my mother’s passing. Recently I facilitated a group of caregivers, who came together to share and compare experiences. As I listened to them I realized how important it is for caregivers, past and present, to talk to each other. It makes all the difference in the world, whether you’re caregiving near or far.
I also realized how lucky I had been. Some caregivers travel a lot farther than I had; some have full-time jobs instead of “flexible” freelance careers. Some have young children or more than one loved one to care for. Some do caregiving for many years. Though I was sorry to lose my mother when I did and miss her every day, I’m not sure I would have had the strength to go on for 14 years.
Still, at the time, it seemed like an impossible task to give care remotely. I was amazed the Amtrak conductors didn’t say, “Oh, it’s you again,” when they saw me with that small suitcase and laptop case looking frazzled and lost—sometimes crying or kvetching into my cell phone to someone for whom it was theoretical.
My husband tells a joke about Russia in Soviet days, when emigration was severely limited. A man demands to leave the country. Finally, he’s allowed to and goes to Israel. He comes back to Russia. Then he goes back to Israel again. Then he comes back to Russia, but this time, the KGB is waiting for him. They tell him he can stay or he can leave, but he can’t keep going back and forth. He has a half an hour to decide.
When the time is up, the man is asked his decision. He says: “I don’t know. Here it’s bad, there it’s bad, but the service on the airlines is terrific.”
It was stressful being home, feeling guilty and worried about my mother. It was heartbreaking being there, having a million things to do and watching my mother decline. Yet for all the occasional hassles of Amtrak (and the expense), there was something comforting about it. Especially when the Wi-Fi was working, and I could work. In between two points of tension was a feeling of liberation.