Guide to Long-Distance Caregiving
How to watch over an aging parent from afar
When I visited my aging parents after not having seen them for several months, I was shocked at their decline. My mom was an accomplished artist, but she had always found time to keep the house an oasis of cleanliness and calm, even after my musician father developed dementia. But this time, I opened my mom’s oven and found maggots crawling inside.
I knew then that my parents needed full-time care. But they had lived in their home for more than 50 years and had no intention of leaving it. So from 500 miles away, I found myself coordinating every aspect of their lives — legal, financial, medical, and day to day needs. I had joined the 7 million Americans who take care of their parents from a distance.
Amanda Hartrey, MA, LMFT, a family consultant for the Family Caregiver Alliance, offers these tips for long distance caregivers like me.
Don’t go solo. “If I could give one piece of advice to the long distance caregiver, it would be to get support, don’t do it alone, and find ways to take care of yourself through the process,” says Hartrey. “It’s important for a long distance caregiver to understand that whether they are at a distance or close by, caring for a relative can be challenging emotionally, physically, mentally and financially.”
Listen to your parents. “I would also encourage the long- distance caregiver to involve the person who needs care in the decision-making process as much as possible,” says Hartrey. “Respect their wishes and values even if they are different from your own.
Build a team. Talk to family members, Hartrey says. Find out how much they are honestly willing to help. The last thing you want is for someone to take on a duty that will never get done. If you have no family members who live near your parents, exchange phone numbers with any close friends or neighbors who might be willing to check in regularly or call you in an emergency.
Figure out what kind of help your parents need most. “Doing an assessment of their needs is important,” says Hartrey. “Ask yourself questions like these: Do they need help with personal care (dressing, bathing, grooming)? Do they need help with chores, meal preparation or transportation? Are they able to pay bills? Can they keep track of their medications? How is their mobility? Would they benefit from grab bars, a shower chair, ramps? Are they isolated? Once you figure out the needs, you can fine-tune what services you may need to put in place.”
Connect with local service agencies. “As a long distance caregiver, a lot of what you’ll be doing is researching, calling and putting services in place for your relative,” says Hartrey. “Often you end up being a case manager. This can be challenging if you aren’t seeing the person on a regular basis. The Eldercare Locator, National Center on Caregiving and Area Agency on Aging can all help with identifying services in the community. Hiring a geriatric care manager can also alleviate some of the work you do.”
Get the papers in order. It may be tedious, but your life will be much easier when this is done. Find and store your parents’ birth certificates, social security and Medicare cards, will or living trust, bank information and other important documents, says Hartrey. Encourage them to give you durable power of attorney for finance (and healthcare) and to fill out an advance directive.
Make your parents’ home safe and accessible. “If your parents are still fairly mobile, you might be able to install a shower chair in the bathroom and grab bars throughout the house,” says Hartrey. “You can remove loose rugs and any other items that may create a risk for falling. You may install ramps or a chair lift to help navigate stairs. If they still need help, you may need to hire in-home care.” Consider getting your parent a medical alert pendant. If your parent lives alone, check out these apps that help you monitor a loved one from afar.
Don’t let caregiving consume your relationship. “It can be good for both you and the person you are caring for to have time to just be with each other,” says Hartrey. “There needs to be space for the relationship. When you call to check in, make time to talk about things other than their care needs. When you visit, make time to spend doing something enjoyable; don’t just focus on appointments. If you can make this space, it can make caregiving feel less like a job. Remember what’s important in the long run.”
Take care of yourself. “You may be going through your own grieving process due to the seriousness of the illness,” Hartrey says. “You may find yourself at times getting frustrated at the system or the person you are caring for or a host of other reasons. That’s OK! There is no guidebook to caring for someone, and it can be really hard at times. Allow yourself that space to feel what you feel. Taking time for yourself to enjoy life is also essential. Finding support with other people who have walked these shoes can be immensely helpful. Finally, don’t forget to take things one step at a time and breathe.”