People with liver disease may need physical, emotional, and spiritual assistance. Often these needs are met by family members or friends.
Are You a Caregiver?
Caregivers help when it is necessary. Most people who assist a family member or friend with liver disease do not think of themselves as caregivers. If you often do any of the following for a person with liver disease, you are a caregiver:
- Help with household activities such as grocery shopping, preparing meals, cleaning, lawn care, or bill paying
- Assist in personal care activities such as bathing, eating, or toileting
- Provide transportation to doctor’s appointments
- Offer advice on medical decisions
Helpful Hints for Caregivers
Many caregivers feel unprepared to help with the needs of people with liver disease and, at the same time, answer their own needs in their own lives. If you are a caregiver, here are some tips to help you manage these often conflicting demands.
Know your rights
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.
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.
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.
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.
For help with insurance questions, call the patient’s insurance company. 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.
Ask for help and try to arrange for respite care for a few hours or days.
Involve relatives in social support when possible.
Learn how to provide proper care by talking to your care-partner’s healthcare professional.
Read as much information as you can.
Cope with stress
Set aside some relaxation time on a daily basis or learn what helps you cope with the stress.
Try to follow a daily schedule to avoid disruption for you and your care-partner.
Go easy on yourself
No one is perfect.
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.
Be patient with one another.
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.
Seek out joy in your relationships. Add fun to the routine by singing, sharing and anything to focus on the positive.
Call the American Liver Foundation Help Line…
(800-GO-LIVER, 800-465-4837) with questions or just to talk and get support.
Share your story
Don’t be timid about sharing your story. Your perspective will help others. You can share your story here.
Involve your care-partner
Ask your care-partner for input on activities, food, family outings, etc.
Be prepared and be organized
Thinking ahead will reduce your stress.
Start a personal journal
It doesn’t have to be handwritten, you can use the computer.
Create a back-up team and train them.