How to be a Long-Distance Caregiver
I Am Miles Away.
If you are caring for someone who lives far away, you are not alone. Approximately 7 million Americans are long-distance caregivers.
Long-distance caregiving for someone with Alzheimer’s disease can be especially difficult. Concerns about your loved one’s safety, nutrition, health, and care may seem overwhelming. You may also feel guilty and anxious because you cannot be there everyday to see how the person is doing.
However, with the right mix of services, ongoing coordination, and support, long distance caregiving can work.
How Can I Help?
How do I know what services are needed?
Visit the person with Alzheimer’s disease to determine what kind of assistance he or she may need. Make the following observations:
Ø Is there appropriate and adequate food available?
Ø Is the person eating regular meals?
Ø What is the condition of the living environment? Has it changed?
Ø Are the bills paid?
Ø Do friends and relatives visit regularly?
Ø Is the person maintaining personal care routines such as bathing and grooming?
Ø Is the person still able to drive safely?
If you are unable to answer these questions, the person’s doctor, neighbors, family members, and friends can be good sources of information.
How do I make the most of my visits?
Few long-distance caregivers are able to spend as much time with their loved one as they would like. The key is to make periodic visits and use your time effectively:
· Make appointments with your loved one’s physician, lawyer, and financial adviser during your visit so you can facilitate the making of important decisions.
· Meet with neighbors, friends, and other relatives so they can share their observations about how the person is doing. Ask if there have been any behavioral changes, health problems, or safety issues.
· Take time to reconnect with your loved one by talking, listening to music, doing for a walk, or doing other activities you enjoy together.
What support systems are available?
There are many individuals and organizations that can help you locate and arrange appropriate services for your loved one.
· Alzheimer’s Association chapters provide information on caregiving, referrals to local services, a help line, and support groups. To locate the chapter nearest you, call (800) 272-3900.
· Geriatric care managers can help assess the individual’s needs, identify local services, and work with physicians, attorneys, and other professionals to oversee and coordinate care. For more information, call the National Association of Professional Geriatric Care Managers at (520) 881-8008.
· Eldercare Locator is a free service provided by the U.S. Administration on Aging to help find local resources such as adult day programs, respite care, elder abuse/protective agencies, Medicaid information, and transportation. To learn more, call (800) 677-1116
· Home health care workers can be hired to help the person with bathing, toileting, preparing meals, and taking medication. Call your local chapter of the Alzheimer’s Association for more information.
· The Local Area Agency on Aging (AAA) has services to help with long-distance caregiving, such as home observation programs. Check with your AAA to see what programs are available in your area.
Who else can I turn to for support?
Establishing an informal support system can help ensure the person’s safety and give you peace of mind.
· Family members and friends can provide companionship. Ask them to visit once a week or so, depending on how far away they live.
· Neighbors can regularly check on your loved one. Ask if they will remain alert to anything unusual such as the smell of smoke or the sound of an alarm coming from your relative’s house.
· Community organizations, such as churches, synagogues, neighborhood groups, and volunteer organizations, often provide companion services.
What if I need to take time off from my job?
Sometimes you may need to take time off from work to resolve a crisis, accompany your loved one to a doctor’s appointment, or address a pressing legal or financial matter.
With more than 64 percent of employed Alzheimer caregivers caring for elderly parents, both government agencies and private businesses are trying hard to meet the needs of caregivers.
The Family and Medical Leave Act (FMLA) entitle eligible employees to take up to twelve weeks unpaid leave. Check with your employee benefits department to see if you are covered by FMLA. Also be sure to ask them about the benefits provided by your state.
Should I move the person with Alzheimer’s disease to my home?
The decision to move the person to your home is influenced by many factors. Here are some things to think about before mobbing the person into your home:
· Does he or she want to move? What about his or her spouse?
· Is your home equipped for the person?
· Will someone be at home to care for the person?
· How does the rest of the family feel about the move?
· How will this move affect your job, family, and finances?
· What respite services are available in your community to assist you?
Moving a person with Alzheimer’s disease from familiar surroundings may cause increased agitation and confusion. In making the decision, you may want to talk with your loved one’s physician or a social worker or call your local Alzheimer’s Association chapter for assistance. In some situations, an assisted living or a residential care setting may be a better option for the individual.
What if I care for a person who lives in a care facility?
Whether your loved one lives in an assisted living or residential care facility, it is important to maintain ongoing communication with the care staff and friends who visit regularly. Here are some suggestions:
· Work with the managing nurse and physician. Agree on a time when you can call to get updates on the person’s condition and progress.
· Call family, friends, or other visitors and ask for their observations.
· When you visit, meet with the staff members who care for the person the most.
What if I am not the primary caregiver?
The primary caregiver may be a spouse, sibling, or another relative that lives with or close to the person with Alzheimer’s. As a long-distance family member, supporting the primary caregiver is one of the most important things you can do. Here are some ways to help;
· Stay in close touch with both the caregiver and the person with Alzheimer’s through telephone calls, cards, e-mail, etc.
· Recognize that the primary caregiver must make final decisions. He or she provides the daily care and is usually the best person to decide what needs to be done.
· Take on caregiving tasks. You can help by handling bills, filling out insurance forms, making phone calls, and finding out what support services are available in the caregiver’s community.
· Plan periodic visits to give the caregiver a break. You can spend time with the individual or run errands for the caregiver.
How do I deal with family conflicts?
It is possible that the primary caregiver may feel resentment toward you for living far away or believe you are not helping enough. And you may disagree with the caregiver’s decisions or feel shut out. To minimize conflicts, try to acknowledge these feelings and work through them. Here are some suggestions:
· Have a family meeting. Talking about caregiving roles and responsibilities, problems, and feelings can help ease tensions. You may want help from a professional counselor or clergy.
· Recognize differences. Some family members may be hands-on caregivers, responding immediately to issues and organizing resources. Others may be more comfortable with being told to complete specific tasks.
· Share caregiving responsibilities. Make a list of tasks and include how much time, money, and effort may be involved to complete them. Divide tasks according to the family member’s preferences and abilities.
· Continue to communicate. Periodic family meetings or conference calls keep the family up-to-date and involved. Discuss how things are working, reassess the needs of both the person with Alzheimer’s and the caregiver, and decide if any changes in responsibilities are needed.
What additional resources are available?
The following resource materials are available from your local chapter or the national office of the Alzheimer’s Association:
· Respite Care Guide: How to Fink What’s Right for You
· Steps to Understanding Legal Issues: Planning For the Future
· Steps to Understanding Financial Issues: Resources for Caregivers
· Steps to Enhancing Communication: Interacting with Persons with Alzheimer’s Disease
· Residential Care: A Guide for Choosing a New Home
Through its nationwide network of chapters, the Association offers a broad range of programs and services for people with the disease, their families, and caregivers. These services include support groups, telephone helplines, educational seminars, advocacy programs, and a variety of print and on-line resources on the disease, caregiving approaches, and current research.
Research into the causes, treatment, and prevention of Alzheimer’s disease will create new options for treatment and care. The Alzheimer’s Association, the largest private funder of Alzheimer research, is dedicated to supporting scientists who are making advances toward conquering this disease. For more information or to locate the chapter nearest you, call: (800) 272-3900
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