Caregiver Resources

The roles you take on as a caregiver are usually dictated by the severity of your loved one’s condition and his or her capabilities and needs. Some of the important roles you may play include:

Caretaker

• Taking care of household activities such as grocery shopping, preparing meals, cleaning, and managing finances.
• Helping with activities of daily living such as bathing and dressing.
• Managing medical care including maintaining medical records and administering or monitoring medication.
• Watching for signs and symptoms of HE progression, side effects of medication, and generally monitoring your loved one’s health condition.
• Scheduling appointments (healthcare provider, lab work, benefit enrollment)
• Coordinating or providing transportation to appointments, shopping, or visits to family and friends.

Navigator

• Learning the role that each member of the healthcare team plays in your loved one’s care and how to work within – or navigate – the healthcare system.

Communicator (and/or interpreter)

• Communicating with healthcare and social service providers on behalf of your loved one.

Listener

• Listening to your loved one and providing the necessary emotional support.

Advocate

• Promoting the interests of your loved one in all situations. This may include securing proper medical care, dealing with health insurance companies, and keeping up-to-date on current information and resources about HE.

People with liver disease may need physical, emotional, and spiritual assistance. Often these needs are met by family members or friends.

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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

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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.

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.

Insurance questions?
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.

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.

Stay informed
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.

Daily schedule
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.

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.

Stay positive
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.

Back-up
Create a back-up team and train them.

The American Liver Foundation recognizes the need for professional healthcare assistance in the form of in-home nursing. As a caregiver your knowledge of your patient’s condition may be limited and therefore you may require more professional assistance. ALF provides these alternatives as an aide in your search for in-home nursing. ALF doesn’t endorse any of these, but simply provides you with the access to them so that you can make your own decisions about which service may be right for you and your patient.

ElevatingHOME & VNAA Find A Provider Resource
The exclusive ElevatingHOME & VNAA Find A Provider Resource allows members of the public to locate high quality home health and hospice care providers in their area. ElevatingHOME & VNAA require members to meet high quality standards such as three or more star ratings in Home Health Compare and Hospice Compare and either state, ACHC, CHAP or the Joint Commission accreditation.

Visiting Nurse Association
Backed by a tradition of nursing, VNA continues to provide expertise, perspective, innovative leadership and solutions around the health issues of the day. Our compassionate team of healthcare professionals is dedicated to serving individuals at home and across the community — no matter their age, station in life or available resources.

Comfort Keepers
We understand that the demands of daily living are often moving targets. No two situations are ever alike. That’s why Comfort Keepers® creates custom home service plans to meet your family’s needs. Our caregivers receive rigorous training geared to enrich lives and form strong bonds. At all our locations, these trustworthy relationships are the standard of care.