In my first post for this blog, I provided several scenarios of people who were absolutely caregiving even though they didn’t identify themselves as caregivers. Here’s one of those scenarios:
Susie has a stressful job at an advertising company in Northern California, but the bulk of her stress comes from another place. Her mother, who lives in Chicago, had a stroke two years ago which created both cognitive and physical difficulties. She still lives alone but needs significant help to do so. As her only daughter, Susie spends most of her time outside of work (and much of her time during work) coordinating her mother’s care from almost 2000 miles away. It’s starting to affect her job performance, and she recently was prescribed medication for high blood pressure. When a co-worker asked if she could do anything to help, Susie replied, “What I really need is to be able to clone myself so I could be my mom’s caregiver.”
What Susie doesn’t realize is that she is a caregiver – in her case, a long-distance caregiver – a member of a steadily growing group in our country due to the geographic scatter that characterizes modern families. In fact, the National Institute on Aging estimates there may be upwards of seven million long-distance caregivers in the United States, defined as a caregiver living an hour or more away from the person needing care.
If you haven’t heard of this phenomenon before, you may be wondering how in the world someone can provide care from afar. The answer lies within the many hats long-distance caregivers wear:
- Researcher – Finding credible information about the person’s care needs, health problems and resource options.
- Bookkeeper – Keeping track of finances, medical records and legal papers.
- Detective – Ensuring the person is receiving quality care and is not being exploited or abused.
- Advocate – Speaking up for the person regarding care provision and choices when the person cannot speak for him- or herself.
- Social worker – Providing emotional support to the person as well as accessing benefits and programs to meet the person’s care needs.
Sounds like a lot, doesn’t it? It is. Not every long-distance caregiver wears all of these hats, but many wear each of them at some point in the caregiving journey. Most wear several hats simultaneously.
I’ve worked with long-distance caregivers both individually and in support groups, and they are a resourceful bunch. Here, I summarize the top three concerns they shared with me along with resources that address these challenges.
Not knowing. Hell, this is hard for any of us, right? In most situations, we’d much rather know what’s going on (even if it’s bad news) instead of live with the discomfort of uncertainty.
Multiply this tenfold in the case of long-distance caregiving. “My dad sounded okay on the phone, but how do I know that he really ate anything today?” “Why does Mom keep mentioning this friend Carla that I’ve never heard of? Is someone taking advantage of her?” When you’re not there to see the situation up close, it’s hard to know what’s really happening.
One way to get more eyes on the situation is to recruit a virtual care team. It should consist of people you trust and might include family members and your loved one’s friends, neighbors, and people that intersect with his or her life on a regular basis. Ask them to check on your loved one from time to time and report back to you with any concerns.
A fantastic tool to help you coordinate your team is Lotsa Helping Hands, which allows you to create a private online care community for your family member. In your private space, you can coordinate schedules and provide updates so everyone on the team can stay current.
No quick way to get there. What if there’s an emergency? This is when teleporters would really come in handy if only they existed. Many long-distance caregivers fear their loved one will fall, become ill or otherwise need them immediately and there will be no fast way to travel there, even with the best of advance planning.
The first step here would be to see if any member(s) of your virtual care team live close enough to your family member to be the point person in case of an emergency. If no one can assume this task, it may be time to hire a geriatric care manager.
Geriatric care managers provide a variety of services such as guidance in care options, advocacy on behalf of your family member and resource management. Geriatric care managers are usually available 24/7 to respond and assist in the case of emergencies. Find one at the website of the National Association of Professional Geriatric Care Managers.
Guilt. Family members end up in different places for myriad legitimate reasons, yet this doesn’t make it any easier for long-distance caregivers. Many who live far away feel guilty for not being closer. This is compounded when the person takes a turn for the worse or a lapse in local care is discovered.
If you identify with these feelings, I encourage you to explore one of the many online communities for caregivers. Online communities provide spaces for long-distance caregivers to connect with other and provide support, advice and encouragement. I list several of them in my blog post on online communities.
Finally, check out this wonderful book written by the National Institute on Aging: So Far Away: Twenty Questions and Answers about Long-Distance Caregiving. It’s free and fully downloadable from the Institute’s website, and it’s a gem of a resource.
One last word – thank you, long-distance caregivers for what you do. Even if it doesn’t always feel like people understand how real your caregiving struggles are, there are indeed people out here that know.