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Long-Distance Caregiving

How Do I know if an Aging Friend or Relative Needs Help?

When caring for an aging friend or relative from afar, it can be hard to know when your help is needed. Sometimes, your relative will ask for help. Or, the sudden start of a severe illness will make it clear that assistance is needed. But, when you live far away, some detective work might be necessary to uncover possible signs that support or help is needed.

A phone call is not always the best way to tell whether or not an older person needs help handling daily activities. The person may not want to worry you or may be embarrassed to admit that he or she cannot handle certain daily activities.

With the person’s permission, you could contact people who see the person regularly – neighbors, friends, doctors, or local relatives, for example – and ask them to call you with any concerns. You might also ask if you can check in with them periodically. When you visit, look around for possible trouble areas – it’s easier to disguise problems during a short phone call than during a longer visit. Make a list of trouble spots you want to check on – then, if you can’t fix everything during your visit, see if you can arrange for someone else to finish up.

In addition to safety issues and the overall condition of the home, try to determine the older person’s mood and general health status. Sometimes people confuse depression in older people with normal aging. A depressed older person might brighten up for a phone call or short visit, but it’s harder to hide serious mood problems during an extended visit.

Getting Started with Long-Distance Caregiving

Who is a long-distance caregiver?

Anyone, anywhere, can be a long-distance caregiver, no matter your gender, income, age, social status, or employment. If you are living an hour or more away from a person who needs your help, you’re probably a long-distance caregiver.

What can I really do from far away?

Long-distance caregivers take on different roles. You may:

  • Help with finances, money management, or bill paying
  • Arrange for in-home care – hire professional caregivers or home health or nursing aides and help get needed durable medical equipment
  • Locate care in an assisted living facility or nursing home (also known as a skilled nursing facility)
  • Provide emotional support and occasional respite care for a primary caregiver, the person who takes on most of the everyday caregiving responsibilities
  • Serve as an information coordinator – research health problems or medicines, help navigate through a maze of new needs, and clarify insurance benefits and claims
  • Keep family and friends updated and informed
  • Create a plan and get paperwork in order in case of an emergency
  • Evaluate the house and make sure it’s safe for the older person’s needs

Over time, as your family member’s needs change, so will you role as a long-distance caregiver.

I’m new to long-distance caregiving – what should I do first?

To get started:

  • Ask the primary caregiver, if there is one, and the care recipient how you can be most helpful
  • Talk to friends who are caregivers to see if they have suggestions about ways to help
  • Find out more about local resources that might be useful
  • Develop a good understanding of the person’s health issues and other needs
  • Visit as often as you can; not only might you notice something that needs to be done and can be taken care of from a distance, but you can also relieve a primary caregiver for a short time

As a caregiver, what do I need to know about my family member’s health?

Learn as much as you can about your family member’s condition and any treatment. This can help you understand what is going on, anticipate the course of an illness, prevent crises, and assist in healthcare management. It can also make talking with the doctor easier.

Get written permission, as needed under the HIPAA Privacy Rule, to receive medical and financial information. To the extent possible, the family member with permission should be the one to talk with all healthcare providers. Try putting together a notebook, on paper or online, that includes all the vital information about medical care, social services, contact numbers, financial issues, and so on. Make copies for other caregivers, and keep it up-to-date.

How can I be most helpful during my visit?

Talk to the care recipient ahead of time and find out what he or she would like to do during your visit. Also check with the primary caregiver, if appropriate, to learn what he or she needs, such as handling some caregiving responsibilities while you are in town. This may help you set clear-cut and realistic goals for the visit. Decide on the priorities and leave other tasks to another visit.

Remember to actually spend time visiting your family member. Try to make time to do things unrelated to being a caregiver, like watching a movie, playing a game, or taking a drive. Finding time to do something simple and relaxing can help everyone – it can be fun and build family memories. And, try to let outside distractions wait until you are home again.

How can I stay connected from far away?

Try to find people who live near your loved one and can provide a realistic view of what is going on. This may be your other parent. A social worker may be able to provide updates and help with making decisions. Many families schedule conference calls with doctors, the assisted living facility team or nursing home staff so that several relatives can be in one conversation and get the same up-to-date information about health and progress.

Don’t underestimate the value of a phone and email contact list. It is a simple way to keep everyone updated on your parents’ needs.

You may also want to give the person you care for a cell phone (and make sure he or she knows how to use it). Or, if your family member lives in a nursing home, consider having a private phone line installed in his or her room. Program telephone numbers of doctors, friends, family members, and yourself into the phone, and perhaps provide a list of the speed-dial numbers to keep with the phone. Such simple strategies can be a lifeline. But try to be prepared should you find yourself inundated with calls from your parent.

Tips for Success

Long-distance caregiving presents unique challenges. If you find yourself in the long-distance caregiving role, here is a summary of things to keep in mind.

Know What You Need to Know

Experienced caregivers recommend that you learn as much as you can about your family member or friend’s illness, medicines, and resources that might be available. Information can help you understand what is going on, anticipate the course of an illness, prevent crises, and assist in healthcare management. It can also make talking with the doctor easier. Make sure at least one family member has written permission to receive medical and financial information. To the extent possible one family member should handle conversations with all healthcare providers. Try putting all the vital information in one place – perhaps in a notebook or in a shared, secure online document. This includes all the important information about medical care, social services, contact numbers, financial issues, and so on. Make copies for other caregivers, and keep the information up to date.

Plan your visits

When visiting your loved one, you may feel that there is just too much to do in the time that you have. You can get more done and feel less stressed by talking to your family member or friend ahead of time and finding out what he or she would like to do. Also, check with the primary caregiver, if appropriate, to learn what he or she needs, such as handling some caregiving responsibilities while you are in town. This may help you set clear-cut and realistic goals for the visit. For instance, does your mother need to get some new winter clothes or visit another family member? Could your father use help fixing things around the house? Would you like to talk to your mother’s physician? Decide on the priorities and leave other tasks for another visit.

Remember to Actually Spend Time Visiting with Your Family Member

Try to make time to do things unrelated to being a caregiver. Maybe you could find a movie to watch with your relative, or plan a visit with old friends or other family members. Perhaps they would like to attend worship services. Offer to play a game of cards or a board game. Take a drive, or go to the library together. Finding a little bit of time to do something simple and relaxing can help everyone, and it builds more family memories. And keep in mind that your friend or relative is the focus of your trip – try to let outside distractions wait until you are home again.

Get in Touch, Stay in Touch

Many families schedule conference calls with doctors, the assisted living facility team, or nursing home staff so several relatives can participate in one conversation and get up-to-date information about a relative’s health and progress. If your family member is in a nursing home, you can request occasional teleconferences with the facility’s staff. Sometimes a social worker is good to talk to for updates as well as for help in making decisions. You might also talk with a family member or friend in the community who can provide a realistic view of what is going on. In some cases, this will be your other parent. Don’t underestimate the value of a phone and email contact list. It is a simple way to keep everyone updated on your parents’ needs.

Help the Person Stay in Contact

For one family, having a private phone line installed in their father’s nursing home room allowed him to stay in touch. For another family, giving Grandma a cell phone (and then teaching her how to use it) gave everyone some peace of mind. These simple strategies can be a lifeline. But be prepared – you may find you are inundated with calls or text messages. It’s good to think in advance about a workable approach for coping with numerous calls.

Learn More about Caregiving

Whether you are the primary caregiver or a long-distance caregiver, getting some caregiving training can be helpful. As with a lot of things in life, many of us don’t automatically have a lot of caregiver skills. For example, training can teach you how to safely move someone from a bed to a chair, how to help someone bathe, and how to prevent and treat bed sores, as well as basic first aid. Information about training opportunities is available online. Some local chapters of the American Red Cross might offer courses, as do some nonprofit organizations focused on caregiving. Medicare and Medicaid will sometimes pay for this training.

Spotting Elder Abuse

From a distance, it can be hard to assess the quality of your family member’s caregivers. Ideally, if there is a primary caregiver on the scene, he or she can keep tabs on how things are going.

Perhaps you have already identified friends or neighbors who can stop in unannounced to be your eyes and ears. Sometimes, a geriatric care manager can help.

You can stay in touch with your family member by phone and take note of any comments or mood changes that might indicate neglect or mistreatment. These can happen in any setting, at any socioeconomic level. Abuse can take many forms, including domestic violence, emotional abuse, financial abuse, theft, and neglect.

Sometimes the abuser is a hired caregiver, but he or she can also be someone familiar. Stress can take a toll when adult children are caring for aging parents, or when an older person is caring for an aging spouse or sibling. In some families, abuse continues a long-standing family pattern. In others, the older adult’s need for constant care can cause a caregiver to lash out verbally or physically. In some cases, especially in the middle to late stages of Alzheimer’s disease, the older adult may become difficult to manage and physically aggressive, causing harm to the caregiver. This might cause a caregiver to respond angrily.

But no matter who tis the abuser or what is the cause, abuse and neglect are never acceptable responses. If you feel that your family member is in physical danger, contact the authorities right away. If you suspect abuse, but do not feel there is an immediate risk, talk to someone who can act on your behalf: your parent’s doctor, for instance, or your contact at a home health agency. Suspected abuse must be reported to adult protective services.

Signs of Self-neglect

Self-neglect describes situations in which older people put themselves at high risk. People who neglect themselves may have a disorder that impairs their judgment or memory. They may have a chronic disease. Knowing where to draw the line between a person’s right to independence and self-neglect can be hard. Here are some signs that may means it’s time to intervene, although they can be hard to recognize during a short visit:

  • Hoarding
  • Failure to take essential medications or refusal to seek medical treatment for serious illness
  • Leaving a burning stove unattended
  • Poor hygiene
  • Not wearing suitable clothing for the weather
  • Confusion
  • Inability to attend to housekeeping
  • Dehydration