Mesothelioma Aid

Caregiving > Building Caregiving Skills

If you have taken on the role of caregiver to a mesothelioma patient, you most likely already have a close personal relationship with that person. Because of this relationship, you will be the first one to be aware of their physical and emotional needs, and often, the person who will carry out the directives of doctors and other health care professionals. In order to do this effectively, you will need to collect information from the patient, relay that information to the proper member of the health care team, develop a plan for dealing with the issue at hand and finally, carry out the plan with realistic expectations.

Communicating with the Patient

Obviously, a diagnosis of mesothelioma blindsides many patients and their families strictly because of the nature of the disease. Some recover quickly from their shock and go on to make decisions about their treatment and care, however, others may go into a state of denial. As a caregiver, you can reassure the patient that you are there to listen to any concerns or fears they may have. Let the patient choose the timing of these conversations. In this way, they are in control of the situation at a time when many other decisions seemingly are being made for them.

Working with Health Care Professionals

If you will be the person accompanying the patient to medical appointments, there are several things you can do to make the most of this valuable time. First, make a list of any questions or concerns you or the patient may have. This should include any symptoms the patient has experienced as a result of the disease or the treatment being given. No question, concern or symptom should be considered minor or not worth mentioning. If you are calling for professional help, try to have any information the staff may need available at the time you call. Whether you are at the doctor’s office or on the telephone, have a pencil and paper ready to write down information so that it won’t be forgotten; start a file and keep it where you can easily find and review it.

Working with Family and Friends

The key to being a successful caregiver is to ask for help from other family members and friends. Obviously, someone living in the same household as the patient will most likely be responsible for developing most of the plans, and in part, for carrying them out, but others can be offered ways they can help, or be told the limits of what is expected from them. Utilize each person’s strengths in distributing tasks; then try not to be judgmental of the way the task is completed.

Taking Care of Yourself

Providing care for someone with mesothelioma may challenge you mentally, physically and emotionally. Although it may seem your own feelings are secondary to those of the loved one you are caring for, you have an obligation to take care of your own needs as well. You can start by educating yourself about mesothelioma. The more you understand, the easier it will be to deal with problems that arise.

Recognize what you can and cannot do, and set priorities. Let others help while you take a break. Have a life outside of your caregiving duties. Allow yourself leisure time to read a book, take a nap or visit with friends. Attending to your own needs can help bring renewed strength and commitment to your role as a caregiver.

Taking care of your physical needs is an important part of coping with stress. Maintain a well-balanced diet, exercise and get enough rest. Take a break occasionally and realize you deserve it. If you think you need a break, you probably do.

Maintain your mental health by not allowing relatives or friends to criticize your caregiving. Listen to their objections, but recognize that they are not the ones providing primary care. As long as you and the patient are comfortable with your efforts, continue on that course. If you start having feelings of guilt about not doing more, remember that you have a very demanding job. Take credit, and ask yourself if doing more is necessary or even possible.

Watch yourself for signs of depression. Be aware of changes such as lack of interest in your normal activities, inability to sleep, fatigue or lack of energy, difficulty in thinking clearly or appetite or weight changes. Speak to a counselor or medical professional immediately if you think you need help. Joining a support group may offer friendship and a forum where you can express your feelings and frustrations. Everyone needs support, and you shouldn’t feel that it’s a sign that you can’t manage or that you are not a good caregiver. Listening to the experiences of others will help you understand that the challenges you face are not unique.