Your Role As A Caregiver

Feeding tube dependency affects family and close friends, too. Find out what to expect if you become a caregiver for a person with a feeding tube, and get tips to ensure you’re also taking care of yourself.

What a Caregiver Does

We think of caregivers as unpaid loved ones who give the person with a feeding tube physical and emotional care. They may be spouses, partners, family members, or close friends. Most often, they are not trained for the caregiver job. They may often be the lifeline of the person with a feeding tube.

What Is a Caregiver?

A caregiver is typically someone who assists a person with a feeding tube and is not compensated for their help. Caregivers can be partners, family members, or close friends, and they often lack formal training. They frequently serve as the lifeline for the individual with a feeding tube. In contrast, professional care providers are compensated and usually have more defined roles, which are not the focus of this discussion.

Caregivers fulfill various roles that evolve as the patient's needs change with and beyond the placement of a feeding tube. Nowadays, much of the enteral nutrition care occurs in outpatient centers and doctors' offices. Caregivers are responsible for the patient's care at home following these treatments and therapies.

As a caregiver, your impact on the patient's management of their illness can be significant, both positively and negatively. Your support can be crucial in helping the patient adhere to treatment plans and take additional steps towards recovery.

Caregivers are part of the care team

The caregiver is part of a care team made up of the patient, other family and friends, and the medical staff. As a caregiver, you may find yourself working closely with the care team, doing things like:

Giving medicines
Handling side effects
Reporting problems
Trying to keep other family members and friends up to date on what’s happening
Helping to decide if a treatment/therapy is working

As part of the team, you’ll help arrange the patient’s care. Caregivers often have to keep track of prescriptions, know which tests are to be done, and make sure all the patient's doctors know what’s going on.

A good caregiver is an important health care resource. In many cases, the caregiver is the one person who knows everything that’s going on with the patient. Don’t be afraid to ask questions and take notes during doctor visits. Learn who the members of the care team are and know how to contact them. Getting the right support and information can help both you and your loved one with a feeding tube.

Caregivers are problem solvers

The person with a feeding tube faces many new challenges. As the caregiver you can help the patient deal with these challenges and get through any problems that may come up.

For example, suppose the patient’s battling a case of pneumonia, and as a result, may need to be in the hospital. This can be very upsetting and may be seen as a setback by the family and the patient. The caregiver can:

Help by pointing out that the patient will need to be in the hospital for only a short time and will have antibiotic treatment to control the infection
While they are in the hospital, make sure that the patient has everything they need, including medicines that are not related to pneumonia.
Call all the doctors involved in the patient’s care and tell them about the infection and that the patient is in the hospital.
Check that arrangements have been made for the patient to stay on the antibiotics at home or as an outpatient after leaving the hospital. If daily visits to the outpatient clinic for IV (intravenous) antibiotics are needed, the caregiver can make arrangements for people to help the patient get there and back each day.

These kinds of tasks may be too much for the patient to tackle while dealing with an infection. This kind of help is valuable. It’s a reassuring sign for the patient that this short-term problem can be handled and solved.

Caregivers help handle insurance issues

You may need to get permission to talk with your loved one’s health insurance company about coverage and reimbursement issues.

Ask if there is a case manager for the insurance
Talk with the health care team if you need to lower expenses
Keep track of medical bills, explanation of benefits, and other receipts from health care expenses. Also, keep a record of who you talked with at the insurance company, including the date, the name of who you talked to and the outcome.

Caregivers help handle legal issues

It may be hard to talk about, but legal issues can be a huge source of stress for caregivers, patients, and families. Common worries include who will manage the person’s money and who will make important health care decisions if the patient is unable to do so. It’s important to bring these up with the patient while they are still able to make choices. This way, you and the rest of the family can be clear about what the patient wants.

There is surrogate or fill-in decision-making tools that may help you and the patient. One example is the durable power of attorney, which allows the patient to choose the person who can make financial decisions on their behalf. The durable power of attorney does not affect health decisions. If you are the health caregiver, you might want to think about asking the patient to let someone else make the financial decisions.

Caregivers help make sure the home environment is clean

Having a feeding tube can lower a person's immune system (protection system), making them more likely to get an infection from unclean things. Things can be done to help lower the chances of the person with cancer getting sick or an infection. Here are a few tips that can help to keep the home clean and prevent infection:

Handwashing- with soap and warm water frequently.
Wipe down areas that are touched the most (counter tops, remote controls, doorknobs, light switches, and phones).
Wash all kitchen surfaces with warm, soapy water before and after preparing food.
Sanitize surface areas in the kitchen after food prep with disinfectants.
Wipe down kitchen appliances (refrigerator, stove, microwave) and sanitize.
Clean all surfaces in the bathroom.
Wear gloves when cleaning the toilet- cancer treatment can be stay in a person's body for a few days after treatment.
Clean other bathroom areas (tub, shower, countertops)
Wash and dry clothes, bedsheets, and towels on the warm setting to disinfect.
Keep pet droppings and areas clean and disinfected.

Cleaning the kitchen and bathroom areas, weekly, would help protect the person with a feeding tube from infection. Sometimes, these areas need to be cleaned more often than once a week. Talk to the care team to know about any special precautions you need to take for your loved one.

Caregivers keep the patient involved

Good communication with the person you are caring for is the most important part of your role. It may be hard for the patient to take part in daily planning and decision-making because they’re dealing with the physical, emotional, and social effects of enteral nutrition and treatment. Your job is to involve the patient as much as possible, so they know they’re doing their part to get better. Here are some things you can try to do to keep the patient involved:

Help them live as normal a life as possible. To do this you might start by helping them decide what activities are most important. They may need to put aside those that are less important in order to do the things enjoyed the most.
Encourage them to share feelings and support their efforts to share. For instance, if they begin talking to you about their feelings about their feeding tube challenges, don’t change the subject. Listen and let them talk. You might want to share how you’re feeling, too.
Let the patient know you’re available to help, but don’t force issues. For example, if they’re trying to do something, such as dress themselves – they might be struggling, but it’s important for them to be able to do this. You might want to do it for them, but try to refrain from doing so. Let them decide when they need help.