If miles separate you from an aging parent, it can be tough to be present for your loved one’s ongoing — and often changing — needs.
However, the setup is not uncommon. An estimated 2.3 million Americans find themselves in the role of a long-distance caregiver, which is defined by living at least one hour from the individual receiving care, according to a 2013 report by the Alzheimer’s Association.
When facing this type of situation, it’s important to understand your role, says Molly Carpenter, author of “Confidence to Care: A Resource for Family Caregivers Providing Alzheimer’s Disease or Other Dementias Care at Home.”
“Everyone wants to feel helpful and contribute,” she says. You’ll likely need to coordinate with others involved in the caregiving process, including those who live closer to your parent. You’ll want to figure out what you can do from a distance, and what tasks should be left to others.
Here, experts weigh in with essential basics to follow, and missteps to avoid, when lending a hand from afar.
Early on, sit down with your parent to talk about finances and responsibilities, Carpenter says. Bring in siblings or other family members who live near your parent.
Make a list of current needs, which might include help paying bills or managing finances. Other needs might consist of purchasing medical equipment, hiring additional home help, paying for transportation services or covering the costs of your parent moving to a different place.
Because online transactions and account management often don’t require a physical presence, it may make sense for you to help out in this area.
In addition to knowing your parent’s financial situation, review your own. If you can’t run errands or help with daily care, you may be inclined to offer aid with the expenses.
Long-distance caregiving for individuals with Alzheimer’s disease or another dementia incurred nearly twice as much in annual out-of-pocket expenses compared with local caregivers, according to the Alzheimer’s Association report. Long-distance caregivers spent $9,654 on out-of-pocket expenses, while local caregivers paid $5,055. These expenses consisted of care-related costs, such as travel, phone bills and hired help for patients.
“Most (cared-for) parents that agree to help are very grateful,” says Betsy Gold, co-founder of LeanOnWe, which connects families with carefully vetted caregivers.
At the same time, your parent will likely want to maintain a sense of dignity and independence for as long as possible. To avoid conflict, “tread carefully and don’t overstep — especially when you’re just beginning to offer your help,” Gold says.
One way to do this is to keep your loved one updated about regular activities that you carry out. For instance, if you agree to pay bills every Friday, check in with your parent once a week to say you took care of the bills.
Also, let your relative know about changes. If you’re in charge of investments and see that one investment is performing poorly, bring it up to your parent. “It’s important to have that discussion rather than just changing it,” Gold says.
When choices have to be considered, let your parent set the strategy. You might offer suggestions, but at the end of the discussion, you’ll want to let your loved one make the final decision.
Those who take part in long-distance caregiving are located an average of 450 miles from the person they’re caring for, according to a MetLife Mature Market Institute study.
However, making the effort to visit can be worthwhile. If your parent is in an assisted living facility or other care center, he or she likely will be excited about introducing you to new friends, says Cecile Godfrey, Country Place Senior Living regional manager for Alabama.
You’ll also be able to have face-to-face meetings with staff members or other care providers. “Ask what the best way to communicate, such as phone calls or email, is when you’re away,” Godfrey says.
While most long-distance caregivers don’t consider themselves to be primary caregivers, 72 percent help the individual receiving care with daily living activities, according to the Alzheimer’s Association report. An in-person visit will give you a chance to tackle to-do lists, such as running errands, picking up medications or helping with home repairs.
If possible, carve out some downtime during your stay. “There’s a lot of psychological benefits to taking a step back and realizing the importance of socializing with parents and not just caring for them,” LeanOnWe’s Gold says. Set aside a night to watch a movie, play cards, go out to eat or take a walk.
About 43 percent of caregivers for people with Alzheimer’s disease and other dementias provide care for one to four years compared with 33 percent of caregivers for people without dementia, according to the Alzheimer’s Association report.
Caregiving can be a lengthy process, and at different points during that period, your parent may face changing health needs. During those times, you’ll want to carefully consider the situation before leaping to a decision.
For instance, if your parent lives at home, during a visit you might notice kitchen items have been rearranged. Rather than concluding your loved one can’t remember where utensils should be placed, ask about it. You may find the primary caregiver made adjustments so items are more readily reached.
Similarly, if you note the furniture has been moved, it could be that safety measures were taken in your absence.
“When you’re away, work to improve your level of communication,” advises Patricia Maisano, founder and chief innovation officer at IKOR, a network of health care advocacy and guardianship offices.
You’ll gain insight into regular activities and be able to better detect changes. For instance, if your parent is upset that a day didn’t go as planned, it might not be a cause for concern. However, if you notice your loved one is often confused, anxious or depressed, it may be a sign of memory loss.
If you have a family member or caregiver who sees your parent frequently, set ground rules regarding how often you’ll communicate, Carpenter says. You might decide to talk on the phone one day each week or send an email twice a month. This will help manage expectations and provide a method to stay tuned in to ongoing needs.
Also, when communicating with a primary caregiver, be aware that the individual is likely under stress. “It’s harder to see mom or dad decline on a daily basis,” Carpenter says.
If you have an upcoming visit scheduled, ask if there are any chores you can take on to relieve the family member or friend of caregiving duties.
If your parent is in a nursing home or care facility, “make regular phone calls and ask specific questions,” says Saul Gruber, an attorney specializing in nursing home neglect. You’ll want to check on medications, daily activities and any signs of change.
Even if you communicate regularly with your parent and the others involved in the caregiving process, drill down a little if something doesn’t seem right, Gruber says.
Perhaps you notice that every time you visit your parent in an assisted living center or nursing home, the staff has changed. “If the same people are not always there, ask the newer staff who they work for,” Gruber says. High rates of turnover might indicate the facility is having trouble maintaining personnel. It also could be a sign that the place is hiring workers from an agency.
To learn more about a nursing home, go to Medicare.gov, where you can compare nursing homes and see facility reviews. Also, Caring.com lists reviews of assisted living centers, in-home care services and other living options in the U.S. and Canada.
If possible, take advantage of technology, IKOR’s Maisano says. If your parent agrees to Skype or FaceTime video technology regularly, you’ll be able to get a better picture of current conditions. This way, even if your loved one insists all is well, it will be easier to note physical concerns, such as bruises, a pale skin color or vision problems.