Caregiver FAQ

What to Expect

Standing by a loved one while they list, wait, receive and recover from a transplant is a long, emotionally wearing process. Like everything else in life, this process will have its ups and downs. While it is invaluable to the transplant candidate to have a friend, loved one, or family member by his or her side through this process, these caregivers must make sure that they also take care of themselves.

The transplant process does not only impact the patient; the transplant patient’s entire family is impacted by the reality of their illness, the transplant, and the changes that come after transplant. Financial pressures from the continued cost of transplant medications, changes in family roles, and other sources of stress can sometimes overwhelm families and marriages. As a caregiver, the key to maintaining emotional stability will be stress management. Stress management tips are discussed below.

Although the transplant patient will have a variety of physical and emotional needs, you as the caregiver must ensure that your needs are being met. Throughout the process, you should maintain your friends and activities and make sure that you have time to relax and step away from the stresses that the transplant process brings with it.

To some caregivers, this may seem impossible because of the vast amount of time that caring for the transplant patient requires. The key will be to enlist support. It is unrealistic to think that one caregiver can provide for all of the needs of a transplant patient. Rather, a support network should be formed of friends, family, social workers, physicians, mental health professionals and/or spiritual and religious leaders. In this way, the transplant patient can receive all of the support he or she needs without too much stress being put on a single individual.

Can I use FLMA time

The Family and Medical Leave Act requires most employers to provide up to 12 weeks of unpaid, job-protected leave to care for family members. Check with your employer’s human resources department for more details.

What should I do

  • Be organized. Keep a journal and make a list of all the things you do to help someone with liver disease. Decide which needs you can meet and which can be handled by other people. Ask friends, family members, neighbors, and co-workers for help. Check with local community agencies, religious organizations, and hospitals or health care clinics for information on volunteer and respite care programs that may offer assistance.
  • Seek support. Talk to other caregivers who will understand how you feel and may share how they manage similar situations. Talk with family members, friends, or religious leaders who will be supportive. Attend individual or group counseling. A social worker may be able to help you find support groups in your area. Some organizations offer in-person or online counseling sessions.
  • Be informed. If you make healthcare decisions for a person with liver disease, use his or her health care team for medical support and guidance. With the patient’s permission, speak to the doctors, nurses, or other health care professionals. In your journal, create a list of questions and write down the answers so you can refer to them again.
  • Know your Insurance. Many companies will assign case managers to answer patients’ insurance and benefits concerns, and assist with getting other health-related services.
  • Be good to yourself. Take some time for you, even if it’s just a few minutes. Have coffee or dinner with friends or family, read a book, exercise, or do something you really enjoy.
  • Respite care. Ask for help and try to arrange for respite care for a few hours or days.
  • Relatives. Involve relatives in social support when possible.
  • Healthcare professionals. Learn how to provide proper care by talking to your care-partner’s healthcare professional.
  • Cope with stress. Set aside some relaxation time on a daily basis or learn what helps you cope with the stress.
  • Daily schedule. Try to follow a daily schedule to avoid disruption for you and your care-partner.
  • Keep a log. Track your care-partner’s needs and your responsibilities (not any health changes or concerns)..
  • Care for yourself. You are better able to care for someone else when you are at your best.
  • Essential phone numbers. Keep handy a list of essential phone numbers.
  • Patience. Be patient with one another
  • Be honest. If you are uncomfortable or unsure, speak up and talk it through.
  • Communication is key. Sometimes conversations can be difficult, but avoiding subjects will be more stressful.
  • Determine your limits. Know your comfort level with providing care at home.
  • Start a personal journal – it doesn’t have to be handwritten, you can use the computer.
  • Back-up. Create a back-up team and train them.