Brain Tumor: Caregiving From Afar
Caring for a loved one when you live far away is challenging. But there are many ways you can help, such as arranging home care, setting up appointments, and paying bills.
Caring for a loved one with a brain tumor presents a double whammy if you live far away: Not only must you grapple with the diagnosis, but you must also figure out your role and how to help your loved one from a distance.
According to the National Brain Tumor Society, one of the first steps for a long-distance caregiver to take is to figure out who will be the primary and secondary caregiver. If your loved one is not cognitively impaired from the brain tumor and can handle his affairs, you should easily be able to provide necessary assistance from afar.
However, if your loved one can’t make decisions or manage his own care, it is critical to make sure his everyday needs are met. Find friends and family members who can pitch in as needed, or hire home care to help. The other option: Consider relocation, either for yourself or for the brain tumor patient.
Helping someone with a brain tumor can be very difficult, explains Charles Goodstein, MD, clinical professor of psychiatry at New York University School of Medicine. With a brain tumor, says Dr. Goodstein, you are dealing with the physical aspects of the disease as well as deteriorating brain function. The person can have a total change in personality, or be unable to do things he once did.
Goodstein's advice: "Find ways to create a division of responsibility within the family or community."
Caregiving From Afar: Ways You Can Help
Make it a priority to meet your loved one's treatment team in person at the outset, and use this meeting as an opportunity to find out the best way to stay in touch, as well as what community resources are on hand for people with brain tumors. Some hospitals offer teleconferencing for family meetings; others allow you to fax or e-mail questions or concerns prior to the appointment.
Another way you can help is to make phone calls and pay bills on behalf of your loved one. For example, you can sort through the necessary insurance paperwork and handle mail. You can also set up appointments and orchestrate daily help — all from a distance. As long as you have a phone and a long-distance calling plan, there are many ways you can contribute to your loved one's care. If possible, get a copy of the local telephone book so that you will have county and state service numbers handy.
You should also consider online resources; there are many Web sites that provide pertinent information for long-distance care for a loved one with a brain tumor. This is also the time to educate yourself about legal and insurance matters. Get copies of your loved one's:
If your loved one is not showing signs of recovery, and death is imminent, make sure you know his wishes and desires for burial.
Caregiving From Afar: The Human Touch
Stay connected with your loved one with regular phone calls and e-mails. If you both have a computer, consider a plug-in camera for each of you; this allows you to video chat at no cost. Try to visit your loved one as much as you can. If work is preventing you from seeing your loved one, talk to your boss about taking time off or see if you can work from out of town for a while. Many times, employers will surprise you with their positive response in times of need.
Caregiving, regardless of how near or far away you are, is stressful and hard. Many caregivers are filled with grief and guilt that they can't be there for their loved one on a regular basis. But at some point, you need to accept the situation for what it is and take care of yourself, too. Eat well, exercise, find a friend or therapist to talk to about your feelings, and, most importantly, don't be afraid to ask for help. You can still be there for your loved one, even if you can't be there in person.