Caring for the Caregivers
Section: Role of Caregivers
Cancer touches more people than just those who receive the diagnosis. If your spouse, parent, child, or close friend has cancer, you may find yourself in the role of primary caregiver and advocate during treatment and, in some cases, through an extended recovery period. You’ll be indispensable in many ways — and among the most important is encouraging the person you love to be as independent as he or she can be.
Being a caregiver can be extremely rewarding experience, but at the same time, a stressful and difficult one. Caregivers are often balancing work and family demands, along with emotional, physical, financial, and spiritual distress, as they help patients cope with a life-threatening illness.
- Who Is the Caregiver?
- Family caregivers may be spouses, partners, children, relatives, or friends who help the patient with activities of daily living and health care needs at home.
- It is important that the family caregiver is a part of the team right from the start.
- What role does the caregiver play during different stages of treatment?
- At Diagnosis
Family caregivers take an active role that begins when the cancer is being diagnosed. The caregiver has to learn about the kind of cancer the patient has and new medical terms. The caregiver also goes with the patient to new places for treatment and helps the patient make treatment decisions.
- During Treatment at the Hospital
The patient may ask the caregiver to be the one to talk to the health care team and make important decisions. The relationship between the caregiver and the patient affects how well this works.
- Take on many of the patient’s household duties.
- Schedule hospital visits and plan travel to and from the visits.
- Work through the health care system for the patient.
- Arrange for home care.
- Take care of insurance matters.
- During Care in the Home
When the patient moves from one care setting (such as the hospital) to another (such as the home), it can be stressful for the patient and the caregiver. The patient usually would rather be at home, which is a familiar and comforting place. The return home usually means more work for the caregiver.
In addition to hands-on patient care, the caregiver may also do the following:
- Be a companion to the patient.
- Continue doing many of the patient’s household duties.
- Take care of medicines and meals.
- Schedule doctor visits, plan travel to and from the visits, and go with the patient to them.
- Arrange for home visits by therapists or other professionals.
- Deal with medical emergencies.
- Take care of insurance matters.
- Work through the health care system for the patient.
Caregivers worry about how they’ll be able to do all this and also take care of themselves. The caregiver sometimes has to give up social activities and miss work. This can all be very hard and very tiring in a physical and emotional way for both the caregiver and the patient. These demands can be especially hard on older caregivers.
- After Treatment Ends
Some patients and caregivers expect life to go back to the way it was before the cancer was diagnosed and this may not happen. Caregiver stress may continue after the patient’s treatment ends, as roles change once again. Some caregivers have problems adjusting for the first year after the end of treatment. Part of this is caused by worry that the cancer will come back. When the caregiver is the partner or spouse of the cancer survivor, there may be sexual problems, also.
- At the End of Life
Caring for a patient at home at the end of life brings a new set of challenges for the caregiver. The patient depends even more on the caregiver for physical and emotional support. The patient’s symptoms also may be more difficult to manage. The caregiver may feel distressed by these new challenges and by not being able to take part in activities and interests that are important to him or her. The caregiver may feel even more distressed if the patient goes into hospice care.
- How to provide emotional support to your loved one?
Patients have many feelings during their cancer experience, ranging from acceptance to sadness, fear, anger, anxiety, and depression. Some patients may have times of wonder and doubt, or they may question their religious beliefs. Their feelings may be a reaction to the cancer or side effects, a fear of being alone, a loss of independence, or thoughts about end of life. These are common responses to dealing with illness. You may need to help the patient find ways to cope with the emotional and spiritual side of cancer. This can be hard. Sometimes patients direct their emotions, including their anger about being sick, toward the caregiver. This may be hurtful to you, but it may help if you know that this is not unusual.
- Try to keep daily life as normal as possible. At the end of each day, reflect on how things went and identify positive experiences.
- Plan fun activities. Consider things you and the patient enjoy doing together. You could listen to music together, watch TV or a movie, or if the patient is physically able, go shopping. If the patient is feeling up to it, make dates for family and friends to visit.
- Encourage the patient to be as active as possible. Exercise may provide an emotional boost.
- Encourage the patient to discuss his or her concerns openly. Ask the patient not “how” but “what” they are feeling. Listen without trying to make everything better. Let the patient know that it is okay to feel sad and frustrated at times.
- There may be times when the patient doesn’t want to talk about having cancer. Respect the patient’s decision not to discuss all aspects of the illness with you.
- Talk about your own feelings. Be honest. Share your concern about the uncertainty of the future, and emphasize that you are a team: “We are in this together.”
- Being together may be the most important thing you can offer. Hugging, touching, and holding hands can be very comforting.
- Ask the patient about things he or she has used to cope at difficult times in the past. Prayer, meditation, humour, or relaxation techniques may all be helpful at times.
- Ask the patient if they want to speak with someone who provides spiritual support.
- Anxiety and depression are common among cancer patients. Learn to recognize the symptoms.
- Anxiety may appear as angry outbursts, irritability, uncontrollable worry, or difficulty concentrating or sleeping. The patient may have racing thoughts; feel nervous, shaky, or jittery; feel a lump in their throat or tightness in their chest or stomach; be short of breath; or feel that his or her heart is racing.
- Depression may appear as sadness or anger. Some patients withdraw, lose interest, or stop enjoying things they usually like. They can have a hard time making decisions. They may feel tired, not be able to concentrate or sleep well, not feel like eating, or feel hopeless.
- What are the benefits of care giving?
Despite the demands of caring for a patient with cancer, the role of caregiver can be an incredibly satisfying and rewarding one. Many caregivers report positive experiences from care giving, including:
- Increased meaning and purpose in one’s life
- Personal growth
- Greater capacity for acceptance and empathy
- A sense of giving back to someone else
- Increased confidence
- The satisfaction of knowing that a loved one is getting excellent care
- Improved relationships
- Family closeness
- Greater appreciation for life
- Shift in priorities and values
- Increased spiritual well-being
- Can there be a harmful effect on the care giver?
- There is no physical harm as long as basic needs and requirements are taken care of.
- Emotional stress can happen which is short lasting and will go away with time.
- If the stress of care giving is left unchecked, it can take a toll on your health, relationships, and state of mind—eventually leading to burnout.
- Fear of cancer, treatment, death , suffering can be overcome.
Section: Remember to take care of yourself!
As a caregiver, it is easy to be overwhelmed by caring for a cancer survivor. An important point to remember is that you, as a caregiver, are also a survivor because you, too, are surviving the challenges, responsibilities, and life-changing effects of this disease and its treatment. Always remember the airplane advisory: “Put your own oxygen mask on before helping others.”
Taking care of someone with cancer can be totally absorbing, leaving you little time for anything else. But it’s important to take your own needs seriously as well. Effective caregivers must also be mindful of their own needs.
Here’s why taking care of yourself is important.
- You’ll take better care of the people you love when your own needs are met.
- You’ll be in a better position to make difficult decisions or have complicated conversations.
- You’ll have the mental energy to shift gears when you encounter something unexpected.
Here are some FAQ’s that might help you through this journey.
- How to take care of yourself during this journey?
As a caregiver, you may be juggling many duties. In addition to caring for the patient, you may have a job. You may have household chores, like grocery shopping, cooking, and cleaning. You may have children or others who need your care. And most importantly, you have yourself to take care of. Balancing these tasks while making sure you have enough time to attend o your own needs can be very challenging.
Caregivers often feel guilty or selfish about taking time for themselves. Some are afraid that something will happen to the patient if they aren’t there. However, if you are going to remain in the caregiver role for more than a short time, you must take care of yourself. If you don’t, you will soon feel “burned out” and will not able to do the important work of care giving.
- Make your own health a priority. Keep all of your doctor’s and dental appointments, get enough rest, eat properly, and exercise regularly. Walking is a great way to get started.
- Before treatment begins, be sure your family member or friend knows you’re ready to provide all the care he or she needs. Line up your own support team as well, Cancer Buddies” including people who will be there when you need them. It’s also a good idea to tell your employer that you may have to take some time off from work.
- Try to get enough sleep each night.
- Take time for leisure activities. Plan to do things for yourself that you enjoy.
- Keep up your physical appearance. Get your hair cut, have a manicure or pedicure, and wear clothes you feel good in. Sometimes, just taking the time to attend to your physical appearance can help you feel better emotionally.
- Enlist family members and friends who are willing to help with household chores.
- If you feel that changes to your work schedule would be helpful, speak with your supervisor.
- Respite programs provide breaks for caregivers for a limited time. Ask your social worker for more information.
- Ask yourself how you are feeling. Some caregivers find it helpful to keep a journal, others find it helpful to speak about their thoughts and feelings, and some prefer to express themselves through art or dance.
- Respect your own religious needs. Continue your practices as often as you can.
- Recognize signs of caregiver “burnout.” You may feel tired, angry, or depressed. You may have trouble sleeping or feel anxious. If any of these signs or symptoms last more than 2 weeks, consider talking to someone. Social workers, psychologists, psychiatrists, and clergy can all be helpful.
- Your workplace may have an employee assistance program. The type of help varies but often includes counselling for financial problems, stress, and depression.
- How to cope with emotions at different stages of treatment?
Although not diagnosed themselves, caregivers are often dealing with emotions of their own as they support their friend or family member with cancer and the feelings fluctuate constantly.
It may seem overwhelming, but it’s important to take the time to help the patient sort out their feelings about the diagnosis. Be objective and create a question list for the next doctor’s appointment. Activities like this can help solidify the facts of the diagnosis for both of you, so the patient is able to move forward with treatment and you can move forward with supporting them.
- Cancer Treatment
Stay in the present and do whatever is necessary to feel grounded by continuing with daily activities, and don’t feel guilty for taking a moment to do some self care. Stopping to enjoy the sunshine, a dinner out, a day without appointments and getting loved ones together are ways to garner support and heal yourself as a caregiver.
- If Treatment Doesn’t Work
Support your loved one’s decisions about their end-of-life plans. Helping the patient consider palliative (pain-relieving) care and making plans for entering hospice care when the time comes can help you feel at ease knowing they’re going to be comfortable. Don’t feel guilty about expressing yourself to your friends and family about what is happening to get much-needed support.
Focus on positive aspects of post-cancer life. Consciously adopt healthy forms of emotional expression and reducing stress including talking with a therapist, journaling, exercising, yoga and meditation. Ask for help when needed and take some “me” time to regroup your energies. Dealing with cancer treatments is one of life’s most challenging interruptions. Being aware of and dealing with emotions that spring from the upheaval will go a long way toward helping you move through the five stages of grief and loss.
As you move forward, don’t forget to tell yourself how special you are!!
|· Family caregivers may be spouses, partners, children, relatives, or friends who help the patient with activities of daily living and health care needs at home.|
· Effective caregivers must also be mindful of their own needs.