Caregiving: Tips for long-distance caregivers

If you live an hour or more away from a parent — or another relative or friend — who needs care, you might wonder what you can do to help. Start by understanding options for long-distance caregiving, ranging from coordinating services to providing respite for a primary caregiver.

How to get started

Long-distance caregiving requires regular communication, careful planning and an understanding of each person's role. Meeting in person or by conference call with the care recipient and all relatives and friends involved in care can help address important questions:

• What is the care recipient's current health?
• What are the current care needs?
• How are those needs likely to change?
• What kind of help would the care recipient like to have?
• What kind of help would the primary caregiver like?
• What community resources or professional services are currently being used?

Planning that supports long-distance caregiving

Family members should check that legal documents, information and emergency plans are in order. These documents help with future decisions and can clarify the roles of each caregiver or family member. These documents may include:

• Power of attorney for health care, which designates who can make medical decisions when the person receiving care can no longer make them
• Advance directive for medical care, which enables a person to make choices about future care
• Living will, which records personal requests regarding end-of-life care
• Documents that designate which caregivers can discuss health care with doctors or care facilities and who has permission to see online medical records
• Medical power of attorney for finances, which designates a person to handle financial matters when a person receiving care can no longer do so
• Contact information of doctors, care facilities and other health professionals
• List of medications, dosages, reasons for medications, and names and contact information of the prescribing doctors
• Back-up plan of roles and responsibilities if the primary caregiver is unable to provide care
• Written daily care plan, updated as needed, that explains schedules, routines and caregiver tasks to inform in-home or substitute caregivers

What you can do from a distance

You can do a number of tasks from a distance that may support your parent or other care recipient, the primary caregiver, and professionals. These include:

• Educating yourself. Do your own research about any relevant illness so that you can better understand the course of the disease, treatment options and typical care needs.
• Researching services. Do online research and make phone calls to learn about in-home care services, daytime services for adults and respite services that provide breaks for primary caregivers. Contact the local Area Agency on Aging for help finding local resources.
• Managing insurance. Manage the calls or correspondence necessary for managing medical bills and insurance claims.
• Paying bills. Have regular bills forwarded to you or manage them online.
• Researching care facilities. Research assisted living or nursing care facilities to plan for future care needs.
• Organizing conference calls. Plan regular conference calls with the family or other relevant care providers to discuss changes in needs. Organize family calls with the doctor, social worker or other professionals.
• Providing emotional support. Make yourself available to a primary caregiver, listen to concerns and frustrations, and ask what you can do to be supportive.
• Staying in touch. Write, call or send video messages to stay in contact as much as possible with the care recipient.
• Visiting. Visit as often as you can to spend time with the family member receiving care and to give the primary caregiver time away. Inquire about taking unpaid leave under the Family and Medical Leave Act.

How to make the most of visits

Careful planning can help you effectively use your time with your family member and support a primary caregiver. Plans might include:

• Setting aside quality time. Plan to spend time with your family member doing relaxing and enjoyable things unrelated to caregiving, such as playing games, listening to music, going for walks, watching movies or visiting friends.
• Supporting the primary caregiver. Ask the primary caregiver what you can do to help during a visit and how to give the caregiver a break from responsibilities.
• Observing. Note how well your family member is doing with daily tasks, grooming, eating and communicating.
• Attending appointments. Ask if you can attend doctor appointments during the visit to stay informed about health and treatment plans. Meet with lawyers or financial advisers when appropriate.
• Checking in with others. Talk to the primary caregiver, friends or neighbors about their impressions of how the person is doing.
• Avoiding distractions. As much as possible, use your visits to focus on the needs of the family member and primary caregiver.

Understanding elder abuse

Older adults who have dementia or need regular care can be subjected to physical, emotional, sexual or financial abuse. Neglect can result in physical and emotional harm. The person abusing may be a professional care provider or facility staff member.

In some cases, a family caregiver can be abusive, or the abuse is part of long-standing behaviors in a relationship. Sometimes abusive behaviors evolve out of the stresses of caregiving. Abuse may be a reaction to aggressive behaviors by a person with dementia.

While it may be difficult to observe evidence of abuse from a distance, you can watch for signs during visits or in conversations with the care recipient and caregivers. Some signs commonly associated with abuse actually may be the result of disease progression. However, an awareness of these signs can help address potential problems:

• Unexplained bruises, burns or other injuries
• Appearing poorly groomed or fed
• Bed sores
• Changes in spending habits or unexplained expenses

If you suspect abuse, talk to a trusted care provider, your family member's doctor or a home health agency. If you think there is immediate danger, contact local adult protective services, a long-term care ombudsperson or the police.

Dealing with guilt

Many long-distance caregivers feel guilty about not being able to do enough or spend adequate time with a family member in need of care. If you feel guilty, remind yourself that you're doing the best you can. It might be helpful to join a support group for caregivers. You might benefit from the tips of others as well as the knowledge that you're not alone.