Head & Neck

The Role of a Caregiver

You have a unique role in caring for a loved one who has a head or neck cancer. Treatments to this area of the body often have an impact on a person’s ability to eat, swallow, chew, breathe or speak. Some surgeries can leave emotional as well as physical scars, which can seriously affect your loved one’s self-esteem and emotional well-being. You may help with some basic functions as well as emotional support. As you help, remember that your loved one may have undergone treatment that has scarred the face and will notice if you stop making eye contact. Try to keep eye contact to let your loved one know you still see him or her as the same person.

  • Manage diet. Treatments for cancer of the mouth, jawbone, gums or throat can make it difficult to eat. Puree or blend food, or serve soft foods, such as mashed potatoes, soups, cottage cheese, custards, macaroni and cheese, scrambled eggs, protein shakes and well-cooked vegetables. Avoid sharp, crunchy foods or foods that require a lot of chewing. Always have fresh drinking water around to make swallowing easier, especially when eating. Ask about nutritional supplements, and consult a dietitian.
  • Plan ahead for eating out. We commonly socialize and celebrate over a meal. It’s important that this component of life continues. Before you go, have your loved one look online at the restaurant menu to select a meal that is appealing. Call the restaurant and ask to speak with the manager. Explain that your loved one needs half of the meal precut into very small pieces and the other half placed in a to-go container. (This is because it will take your loved one twice as long as others at the table to eat the meal). Request that the person filling up water glasses keep your loved one’s glass full. Select a table in the back rather than in the middle or front where there is risk of people staring. Promote conversations with others that are non-cancer related. This is a social time to be enjoyed.
  • Communicate. Share patient updates by group text, e-mail or another social media tool to relieve you and your loved one of having to repeat the same story multiple times. Communicating in this way also ensures that everyone hears a consistent message.
  • Manage information. Bring a list of your loved one’s medications and allergies to doctor’s visits, along with questions that you or your loved one have written down to ask the doctor. Take notes at these visits to help you both remember all of the details.
  • Organize. Set up a system to manage bills, research, insurance correspondence and medical forms. Use a paper or electronic calendar to keep track of appointments and medication schedules.
  • Drive. Take your loved one to doctor’s visits or to run errands.
  • Clean. Coordinate housework to happen while you are at doctors’ visits, or set aside a block of time to help do the house chores. The most important time for extra cleaning will be when your loved one is receiving chemotherapy, if that is part of the treatment plan.
  • Create a meal calendar. Others often ask to help, so let them by bringing meals. Be sure to let them know about your loved one’s special diet needs.
  • Shop. Plan trips in advance to relieve the stress of shopping, or volunteer to shop for your loved one. Shopping online can also preserve valuable time and energy for both of you.
  • Exercise. Rehabilitation is important. Suggest a walk or going for a ride to get out of the house.
  • Assist with legal issues. Help your loved one set up or find resources for long-term medical directives, including Durable Power of Attorney for Healthcare, an Advance Medical Directive and a Living Will.
  • Promote safety. Reduce clutter at home. Use night lights, and put a sticker on the phone with an emergency number to call. Consider medical identification jewelry.
  • Care for kids. Help your loved one enjoy some downtime by taking the kids out. If your loved one prefers not to be left alone, offer to entertain the kids at home. Recognize that young children may feel worried or confused about why their parent is ill and needs help. Be prepared for such a discussion by being honest while supportive and dispel any worries that children may have about causing their parent to become ill.
  • Care for teens. Commonly when a parent is ill, teenagers are forced to assume a lot of adult responsibilities — cooking, cleaning, babysitting and giving up time with their friends. Step in and make sure that teens still get to be teens, and that when they help out, they are recognized for pitching in. Give them an opportunity to communicate with you so they can tell you their concerns and feelings.
  • Care for pets. Take the dog for a walk or to the dog park. Pet treats and toys are always a nice surprise. Consider boarding pets if your loved one will be away from home for an extended time.
  • Handle outdoor chores. Mow the lawn, trim the hedges or shovel snow while your loved one is going through treatment, or find a service to do so.
  • Support. Help find a local or online support group for your loved one.
  • Socialize. Invite a friend over to talk about something with your loved one that is completely unrelated to cancer. You both will enjoy the break.
  • Reduce risk of infection. Your loved one will be more prone to getting sick if around others with colds or flu symptoms. Make sure visitors are aware of this in advance. If temperatures are chilly, have your loved one wear a loose scarf around the neck area. This will help reduce risk of coughing spells by getting too much wind blowing around the stoma or surgical area.
 

Caregiving Begins with Taking Care of Yourself

Caregiving is a mentally and physically exhausting responsibility, and you won’t be any good to your loved one if you aren’t good to yourself. Caregivers often feel that by focusing on themselves, they are being selfish. Actually, it has the opposite effect, allowing you to be more alert and focused on your caregiving responsibilities. Eat right, exercise and get enough sleep. Don’t ignore your favorite hobby. Lose yourself in a good book or movie. And don’t feel guilty when you enjoy yourself. Everyone deserves a diversion.

You play an essential role, but it is important to realize you cannot carry the weight of the world on your shoulders. When you ask for and accept help from friends and family members, you get relief and they feel as if they are making a valuable contribution.

Make time for your own cancer screenings. Commonly, caregivers delay their own health needs while caregiving. Don’t. Keep your appointments for mammograms, colonoscopies, pap smears and skin checks, as appropriate. Factor into your daily routine time to do some power walking. Practice 10 minutes of meditation or mindfulness each day. Your body and mind will thank you for it later.

It may be helpful to talk with others who are facing the same challenges as you. Search for support groups for caregivers, either in your local area or online.

 

 

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