Taking on the role of caregiver for a loved one with a brain tumor is one of the hardest jobs in the world. The emotional, physical and mental toll is enormous. The responsibilities are many and varied and can challenge a caregiver in ways never imagined.
As a caregiver you will need to become an expert not only in attending to a patient’s physical needs, but also in managing the details and communication with doctors, pharmacists, insurance companies, employers and others. If you are an adult helping your parent, you also need to juggle the daily responsibilities of your own life, and possibly your children’s. The Orientation to Caregiving Handbook can help you understand the different things you may have to deal with in the role of caregiver.
Taking Care of Brain Tumor Patients
Caregivers for brain tumor patients face a unique set of challenges. The existence of a brain tumor, and the protocols used to treat it, can create symptoms and side effects that other illnesses don’t always have. Brain tumor patients may experience major personality changes. The tumor and treatment can also affect a person’s ability to think, reason and remember. Because of these unique characteristics, it can be hard for caregivers to find the support or answers they need through conventional resources. Fortunately, there is help.
Palliative care is an option. It is specialized medical care for people with serious illnesses. Palliative care providers may also be hospice providers but they are different types of care. Palliative Care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
Palliative care teams provide help for the patient and family with medications, advocacy, navigating the health care system, spiritual support, access to therapy and help with long-term planning. You will probably need a referral from the patient’s primary care physician for palliative care. One of the hardest things about caregiving is how isolating it is. With a palliative care team in place, you won’t be alone.
Additional information about palliative care can be found below, as well as on our Palliative Care page.
Taking Care of the Caregiver
The very nature of the role causes many caregivers to put their own needs last. In the beginning of this journey, the focus is naturally on the brain tumor patient. Whether the tumor is benign or malignant will help determine the path of this journey and how long it may last. Both short- and long-term caregiving can bring hardship, although the type of hardship is different. Either way, it is imperative that you put some effort into thinking about your own wellness.
Many guides for caregivers suggest creating a three-ring binder with sections for medication, symptoms and side effects, and questions/ notes from doctor visits. You should also consider a separate binder of a section in your binder devoted to your own health and needs as a caregiver. With a list of things that can help keep the caregiver healthy mentally, physically and emotionally, and notes and reminders to yourself, this is often very helpful for taking care of your own needs.
Caregiving is a long-term, strenuous commitment, and you need be vigilant of your own physical health.
- Make a doctor’s appointment for a full physical workup. If you have underlying physical issues such as high cholesterol or high blood pressure, your doctor will help you manage it. You may want to talk with your doctor about any problems you’re having with anxiety or sleeplessness and about nutrition and exercise.
- Take steps to manage the stress of your situation. Keep a written, ongoing list of things that need doing, and make an effort to accomplish one a day. It is very gratifying to check stuff off a list, and it is not cheating if the list includes trivial tasks. Taking note of “little victories” may seem silly, but doing so can give you a greater sense of control of your environment.
- Try to accept your new reality. Caregiving can be all-consuming, and may leave little time for things that might have seemed important before the illness was diagnosed. In some ways, it is an opportunity to de-clutter your life of things that might take up more space than they deserve. It may be the time to re-evaluate obligations, routines, and perhaps even some relationships so your time is spent on only those things that support or nourish you in some way.
Both you and the patient will need a healthy, balanced diet to get through this journey. Do what you can to maximize the nutrition you’re getting.
- Be mindful of what prepared foods, such as frozen dinners, takeout and ready-to-eat options, you choose. Look for products that have fewer preservatives, and lower sodium or fat. Grocery stores that emphasize organic foods have excellent ready-to-eat and frozen food options that are both convenient and healthy.
- You can start with buying frozen vegetables and fruits. They offer just as much nutrition as fresh, and are far more convenient. For snacking, ready-to-eat fruits and vegetables all keep well in the refrigerator and can double as a side dish for dinner. (Combine cut-up fruit together for a salad; steam vegetables in the microwave).
- Make meals in advance and freeze multiple servings in individual containers. Baked pasta dishes, soups and stews all freeze well, and can make dinner easy.
- Many people turn to sweets or snacks in times of stress. Continue to enjoy these treats, in moderation. You may want to try combining for a healthier snack, such as yogurt, with one cookie or a couple pieces of chocolate.
Physical activity can help with stress management. Carve out some time every day for exercise or at least to move around.
- Gyms are only one place to exercise. There are DVDs or online videos for every kind of exercise program to use at home. Libraries have a good selection, too.
- Ideally you’ll be getting out of the house regularly for fresh air. A walk is great exercise, even if it is just around the block. Having a regular plan to walk with a friend will give you something to look forward to. Gardening is both physically and mentally healthy, too. Even tending to container gardens on a deck or balcony can give you both pleasure in the accomplishment and fresh air. Or try some stretching every day to help reduce stress.
Be realistic. You may not be able to perform all of the duties of a caregiver with patience and compassion. You may feel every human emotion during this journey, sometimes all at once. Reach out for help before it becomes overwhelming.
- Many caregivers feel anger toward their loved one, then feel guilty about feeling angry. Know that anger is a legitimate emotion in your situation. Your life has changed. Guilt is also normal. A qualified counselor, social worker, therapist or spiritual advisor can be valuable in helping you work through your feelings. Keeping a journal is helpful for many people, too.
- Caregiver support groups can be found in many communities and online. Online groups are ideal for caregivers who cannot get away. Visit our Connections Online Support Community specifically for brain tumor patients and caregivers, at www.abta.inspire.com.
- Make sure to fit some time for yourself into your calendar. Getting away for a few hours will make a big difference in your outlook. Although errands are inevitable, put aside time for fun things, too. Even a trip to the library can help. Not every book needs to be related to your situation. A novel, a mystery or a movie can offer a nice distraction.
When friends and family ask “What can I do?” or “Let me know how I can help,” resist the urge to answer brightly, “Nothing, thanks. We’re doing fine.” Chances are, you will not always be “doing fine.” Non-specific offers of help can be transformed into concrete assistance, with a little advance work.
- Make a list of people who have offered help. Then ask a friend or family member to act as volunteer coordinator. Choose someone you feel comfortable being honest with about your needs. You may need someone to stay with the patient while you run errands, take over a night shift, grocery shop, provide meals, even clean. The volunteer coordinator can then match the offers of help with the help needed on an ongoing basis.
- There are now websites that can keep family and friends informed of a patient’s progress during illness. Some include features such as a helping calendar, so willing volunteers can sign up to help with specific tasks.
- If you or your loved one is affiliated with a church, check with their community outreach programs. Many have volunteers to help families with meals, rides, visiting and other practical matters.