Martha Aron’s parents lived in Key Biscayne, Florida, for 35 years. They had an active social and cultural life there and remained independent well into their 90s. As Martha’s father approached 100 years old and her mother began to have cognitive problems, life got harder.
At first someone was hired to drive them, take them to doctor appointments and cook for them, but weeks before Martha’s father, Mike, was to celebrate his 100th birthday, her mother, Tamah, fell and hit her head in the bathroom.
Devoted to their parents, both Martha and her sister, Barbara, rushed from Maryland and New York to be with their parents when this happened. Although Mike thought once Tamah was out of the hospital, they would continue to live alone without much help, both Martha and Barbara knew this was dangerous and would not allow either of them much peace of mind from afar.
After much insistence, around-the-clock health aides were hired to take care of Tamah and Mike. Martha, a nurse, continued to work, but it became untenable as her father became less autonomous. He would call her multiple times a day during work hours to ask how things worked and how to handle various activities of daily living.
After retiring, Martha and her sister planned regular visits at different times of each month. They called their parents multiple times a day to make sure the aides were working out and their parents were being cared for properly.
When the sisters visited, they would check the pill boxes, take them to see friends, do the grocery shopping, make lists for the aides, go with them to their regular physical therapy classes and spend a good amount of quality time with them.
“The last three years were the toughest, as we were constantly in a state of worry, but my parents wanted to stay in their home and we did everything we could to make that possible,” Martha says. “My parents were incredible, extraordinary people and fantastic parents, and because we loved them so much, my sister and I were willing to take on overseeing their care from a distance.”
Martha and Barbara are among the estimated 5 million to 7 million long-distance caregivers in the United States.
Because many older people are increasingly choosing to age in place, more family members find themselves managing care from a distance. These long-distance caregivers make up about 15% of all family caregivers and live at least an hour away from the loved ones for whom they’re providing support. The average distance of a long-distance caregiver is 450 miles.
While it’s no easy task to be a long-distance caregiver, the following are some strategies you can adopt to streamline duties and be more organized in your approach:
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1. Arrange Family Meetings
Along with the loved ones for whom care is being provided, all family members should sit down together to determine what your relative’s needs are, which family members can help and how they can help.
A financial discussion should be part of this meeting so that everyone knows how much money there is to take care of your loved one, where it’s coming from and how long it will last.
It’s important to be sure from the start that everyone understands the situation, the issues, the needs and wants of your loved ones and the abilities and availabilities of each member of the family to provide those needs.
One family member who can look at the big picture should be designated as the primary caregiver. Then, a plan of action using each person’s skills should be agreed upon, and each family member should agree to keep other family members informed. Family members should be clear among themselves about who can do what to help.
“Duties should be articulated and agreed upon, and responsibilities for those who live closest and those who live farthest away should be clearly spelled out. For example, family members who live farther away may be able to take on case management tasks that don’t require a hands-on presence,” says Allison Applebaum, professor and director of the Steven S. Elbaum Family Center for Caregiving at Mount Sinai in New York.
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2. Create a Local Network
When you don’t live nearby, you will likely become uneasy about the safety and well-being of your loved one. To alleviate some of these feelings, try to either create or make use of local networks where your loved ones live. They may include family members, friends and health aides who can help with daily tasks, like monitoring your loved one’s health and acting as an intermediary between you and local service providers.
If you can afford it, you may want to hire a geriatric care manager, an aging life care manager or an eldercare navigation coordinator to be on the ground overseeing your loved one’s care. You may also want to hire aides who will take on specific duties. If you can afford this, it will save you time, money and stress.
Unfortunately, people without resources are more vulnerable, have fewer options and may end up in a facility sooner than those who have more financial security.
Medicare and Medicaid do cover certain levels of support, but certain requirements for that support need to be met.
“Anything you can do to create an on-ground support network will allow you to feel less guilt and anxiety about being far away,” Applebaum says.
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3. Stay Up to Date With Their Health Information
It’s important for you and other family members to be aware of your loved one’s health conditions and treatments. Make a list of the names of all doctors with their phone numbers and contact information and give it to everybody involved with caregiving. Be sure this list is posted in the home where it’s visible and easy to see.
Everyone involved either locally or from a distance should know what kind of insurance and medical benefits your loved one has.
Keep a calendar of medical appointments and a list of all medications and give them to family members. They should also be posted in a place where they can be seen in your loved one’s home. Pill boxes can be filled by aides or other assistants, and the list of medications, doses and when medicines should be taken should be easy to access. Drugs should be taken away when they are no longer prescribed.
You’ll need to have written consent that will allow doctors, hospitals and insurers to share information with you.
It’s important for you to educate yourself about medical conditions your loved one is being treated for and to have access to their patient portal. You should also do your best to have a relationship with their doctors.
4. Keeping Track of Important Documents
Whether you are nearby or far away, you’ll need to make sure that all legal, financial and medical documents are up to date and located where they can be easily found. Some of those documents include the following:
— Power of attorney documents allows you or another person to make financial and health care decisions for your loved one.
— Last will and testament should make clear your loved one’s wishes for inheritance after death.
— Trusts outline how assets should be managed and distributed.
— Living will/advance directive states a living person’s wishes for end-of-life care. It may also include a health care proxy stating who should make decisions if your loved one is unable to.
— HIPAA authorization is consent for others to have access to your loved one’s medical information.
— Financial documents include property deeds, mortgages and any loan agreements, which will let you know what your loved one’s financial obligations are.
— Insurance policies can include health care insurance, long-term care insurance and life insurance.
— Banking information includes checking and savings accounts that you may need for paying bills and managing your loved one’s finances.
— Investment and retirement accounts are important for the care of your loved one or for you to have access to during their older age or after they die.
— Social security information to help you manage your loved one’s finances.
— Tax returns will help you understand your loved one’s financial situation. You may need to be involved for yearly filings.
— Funeral information and burial plots may have been planned and purchased by your loved one, and you’ll need to have access to these documents.
5. Ensure Home Safety
When caregiving from a distance, you’ll want to make sure the home in which your loved one is living is safe from incidents, such as falls. You’ll likely be anxious and worried on a regular basis, so this is one thing you can do to alleviate some anxiety.
Here are some ways you can create a safer environment:
— Walkways and entryways can be made safe by making sure sidewalks aren’t cracked and uneven. Make sure stairways have rails, and get rid of thresholds that your loved one could trip on.
— Bathrooms can be dangerous areas. Make sure all bathmats, showers and tubs are nonslip. Grab bars in baths and showers can help prevent falls.
— Bedrooms should not have clutter and should be set up so that a walker or wheelchair can move around unobstructed.
— Kitchens should be set up to lessen the amount of bending or crouching, and appliances should be well lit.
— Rugs can be loose, wrinkled or have uneven edges that can be tripped on. Use rug pads to prevent them from slipping or tape them down.
— Clutter should be eliminated in all areas of the home to prevent falls.
6. Communicate
When you live at a distance, it’s harder to be informed about your loved one’s well-being. Set up regular check-ins with your family and their caregivers by phone or video calls so that everyone is up to date and well-informed about what’s going on.
Everyone, including family and any hired caregivers, should have a list of important phone numbers and email addresses. If communication is open and honest from the start, family conflicts and old negative interfamily dynamics can be reduced.
“If your loved one is cognitively impaired, they may not appreciate what’s happening to them, which will require you to adjust your way of communicating,” says Dr. Darby Morhardt, research professor at Northwestern University Mesulam Center for Cognitive Neurology and Alzheimer’s Disease. ” If this happens, it will be important for family members to recognize that their loved one’s capacity for decision making is diminishing, which will make them more dependent on the family. The more families can agree on their messages and next steps, the better for all.”
7. Schedule Visits
When you live at a distance, your visits should be planned so you can see how your loved ones are managing in their living environment. Each time you visit, you should evaluate their needs, make any needed adjustments, meet and speak with their aides and spend good, quality time just being with them. If you can, rotate your visits with other family members.
During your visits, do some things your loved ones enjoy, such as visiting friends, watching movies, talking and eating together. Your visits may also be a time to schedule doctor appointments or go over financial matters. You may want to help with household chores like laundry, grocery shopping and cooking.
Make sure your loved one is safe by looking for any signs of abuse or unexplained injuries.
Learn about your workplace policies. You may be eligible for unpaid leave for caregiving under the Family Medical Leave Act, or you may be able to do some work remotely, though it’s important to be present when you visit.
“Traveling frequently to provide care can take a toll on your mental health, so it’s important to set boundaries and establish realistic expectations about how often you can visit,” says Jessica Miller, regional director of Family Care Center San Antonio.
8. Use Technology
There is much good use for technology when you are a caregiver at a distance. You can join telehealth visits, share calendars with family members, join video calls and have your loved one wear a medical alert device in case of a fall or an emergency.
Other uses of technology may be helpful, but don’t use them without the knowledge and consent of your loved one. You don’t want them to feel like you’re spying on them, and they are entitled to privacy. If they agree, some of the following can be considered:
— Remote monitoring services include video monitoring and tracking devices.
— Electronic pill dispensers can monitor if pills can be taken.
— Online patient portals can be used to schedule online appointments.
— Motion sensors detect movement.
— GPS trackers can locate your loved ones at any time.
— Interactive speakers can answer questions, help with tasks, provide information, remind your loved one to take medication, play music, set alarms and more.
9. Prepare for Emergencies
In case of an accident or emergency, you’ll need to be their advocate in the emergency room or hospital, so it’s important to have a plan to get to your loved one quickly. This plan should be worked out before there’s a crisis. Have a support system ready to step in for you at your home when you need to leave, and your support system where your loved one lives should also be ready to help until you get there.
Research and know your travel options. Check to see if emergency airfares exist and learn how to book them. Check the same information for rental cars. If you can’t stay with your loved one, know ahead of time what options you have for lodging.
To help others find you in an emergency, make sure your contact information is either in your loved one’s wallet or that they are wearing the information on a bracelet or necklace.
10. Adapt to Their Needs
As time passes, situations change. Be prepared for those changes and for ongoing family conversations about health declines, the feasibility of independent living and what the situation is with financial resources.
Living arrangements may need to be changed, and with your loved ones present, conversations should be had about senior living communities, assisted living and other living options or the need to hire additional help.
11. Care for the Caregiver
Whether you’re caring for a loved one where they live or from a distance, you’ll be emotionally drained. You may feel guilt, stress, anxiety, a sense of powerlessness and a feeling of being alone. When you’re at a distance, those feelings can be amplified. It’s also emotionally challenging to see your loved one becoming older and more fragile.
Make sure to take care of yourself by eating well, sleeping well and maybe seeing a therapist. Respite care services, such as adult day services or temporary stays at an assisted living facility, can provide short-term relief for caregivers to help you to better care for your loved ones and be present when they need you.
Don’t try to be perfect. Do the best you can and accept that you’ll sometimes come up short.
“It isn’t unusual to feel guilty about being far away from a loved one for whom you are caring, and if you can arrange for direct care workers to be on the ground — either through paying out of pocket or through Medicaid — their presence can give you some peace of mind,” Applebaum says.
Bottom Line
Caring for a loved one from a distance can be exhausting, anxiety-provoking and challenging. You’ll need support systems for yourself and for your loved ones, and you’ll have to be realistic about what you can and can’t do.
Communication between caregivers, loved ones and others will be crucial to a successful experience. It will ensure that everyone is on the same page and that you’re doing your best to work as a team.
“It’s important to know that even if you are not on the ground, you’re still able to make a meaningful and important contribution,” Applebaum says.
Another side of caregiving, she adds, is that you can have an experience caring for your loved one that is rewarding, unforgettable and beautiful. You may get to know them — and yourself — more deeply than you ever have and discover strengths you never knew you had.
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How to Provide Long-Distance Caregiving originally appeared on usnews.com
