Journey of a caregiver with a cancer patient
Are you helping a loved one get through cancer treatment? If you are, you are a “Caregiver.” Caregivers are a major extension of the health care team. They may be family, friends, or partners offering physical and emotional assistance to cancer patients.
The shorter hospital stays, nowadays, and the shift toward increased outpatient care have placed a significant responsibility burden on caregivers, many of whom have little to no preparation for this new role. Rapid advancements in cancer treatment have strengthened our ability to prolong lives and increase longevity and cancer is now, in many cases, a chronic disease rather than an unexpectedly life-limiting disease. Such patterns have raised the pressure on caregivers significantly, and their needs have increased substantially.
Caregiving is a responsibility that requires a lot of giving. Sadly, they are not helped by anyone to escape the exhaustion and the psychological breakdowns. We have seen that on the spouse, partner, parent, or child, a cancer diagnosis can be at least as difficult as it is on the person with the cancer diagnosis. But while the person with cancer appears to draw too much attention, the caregiver is considered a distant second.
Despite the sadness and shock of having a loved one with cancer, in caring for that person, many people find personal satisfaction. You may see it as a positive direction allowing you to display your love and appreciation for the individual. Often, it can feel good to be supportive and know that a loved one needs you.
You may find that caregiving enriches your life. You may feel a deep sense of satisfaction, confidence and achievement in caring for others. You will also learn about the inner talents and abilities you didn’t even know you had, and discover a stronger sense of meaning for your own life.
Caregiving can also be stressful and frustrating. We may feel sorrow and remorse at the suffering of our loved one, and may also feel depressed or frustrated as you continue to cope with several challenging issues.
Caregivers may experience physical symptoms, such as fatigue and sleep disruption. This is more likely to be an issue for caregivers who are unable to get the support they need, and who are not taking care of themselves – especially those who are trying to push forward alone, even as their own quality of life is suffering.
You’ll need to take care of yourself, too
It is common, at this time, to feel stressed and overwhelmed. You may feel angry, sad or worried, just like your loved one. Try sharing your feelings with other people who can help. Talking about how you are feeling can help. You could even speak with a counsellor or a social worker.
Understand and accept your feelings
You probably get a lot of feelings as you care for your loved one. There is no right way for you to feel. Every single person is different. Knowing that they are normal is the first step to accepting your feelings. Give yourself some time to think on it. Some feelings that might come and go are mentioned below. These are all normal and crucial part of accepting major life changes.
- Sadness: It is okay to feel sad. However, if it lasts more than 2 weeks and prevents you from doing what you need to do, talk with your doctor.
- Anger: You can get angry with yourself or members of your family. You may be angry with the person that you care about. Know that anger is often a product of fear, panic, or stress. Try to look at what is and underneath the anger.
- Grief: You might feel a loss of what you most value. This may well be the health of your loved one. Or, it may be the loss of the everyday life you had, before the cancer was discovered. Let yourself grieve these losses.
- Guilty: Feeling guilty is equally common. Maybe you do not think you helped enough. Or maybe you feel guilty about being healthy.
- Loneliness: You can feel isolated, even with many people around you. You may feel like nobody understands your problems. Also, you may be spending less time with others.
What may help know that you are not alone?
If your feelings get in the way of daily life, communicate with others. Perhaps you need to talk to a family member, friend, priest, pastor or spiritual leader. It is also likely that your doctor or social worker will help. Here are a few other things, which might help you:
- Forgive yourself: Know we all make bad decisions whenever we have a lot of things in our thoughts. No one is perfect, and at this present time chances are you are doing whatever you can.
- Cry or express your feelings: You need not pretend to be cheerful. It is all right to indicate you are either sad or angry.
- Focus on things worth your time and energy: For now, let small things go. Do not fold clothes, for example, if you are tired.
- Don’t not personally take your loved one’s anger: It is very normal for people to centre their feelings towards those who are closest to them. Understand your loved one’s anger. They are frustrated, frightened, anxious and worried.
- Be Hopeful: What you hope for may change with time. But you can still hope for love, happiness, acceptance and comfort.
Caring for Yourself
Make time for yourself
Right now you may feel your needs are not relevant. Or that you have been looking after your loved one for so much time, there is no time left for yourself. Taking your own time will help you become a better caregiver. It is important to look after your own needs and wishes to give you the strength to carry on. If you have health issues, this is even more valid.
You may want to:
- Find good things to do for yourself. Just a few minutes can be of use. You could watch television, call a friend, work on a hobby or do whatever you enjoy.
- Stay active. Even gentle workouts like going for a stroll, stretching or dancing will make you less tired. Playing with children or pets and gardening are also helpful.
- Find ways to get in touch with the friends. There are places where you can meet other people who are close to you. Or can you chat, or receive phone or email support
- Spend more time off. Ask friends to pitch in, or family members. Take some time to rest.
Caring for Your Body
You may be so busy and worried about your loved one that you do not care about your own physical health. But it is also very imperative to look after your health. Doing so would inspire you to support others. It is important to:
- Keep track of your medical needs: Follow up with check-ups, screenings and other appointments of your own.
- Look for any symptoms of depression or anxiety: Stress can cause a lot of different feelings, or changes in the body. But if they last more than two weeks, please speak with your doctor.
- Take your medication according to prescription: To save visits to the pharmacy, ask your doctor to give you a big prescription. Find out if your pharmacy or grocery store delivers to home addresses.
- Eat healthy meals: Eating health will help you stay strong. If your loved one is in the hospital or has long doctor’s appointments, bring along home food that is easy to prepare. Homemade sandwiches, salads, for example, fit easily in a lunch container.
- Get enough rest: Listening to soft music or doing exercises to breathe can help you fall asleep. If you are not getting enough sleep, short naps can energize you. If sleeplessness becomes an ongoing issue, be sure to talk with your doctor.
- Exercise: Running, swimming, yoga or riding bicycle are a few ways to make your body move. Any type of exercise (including garden work, cleaning, mowing, or going up stairs) can help keep your body healthy. Having a total of 15-30 minutes of exercise, a day will make you feel better and help you control your stress.
Healing Circles can get together in person, by telephone or online. They will connect you to other caregivers and cancer survivors. They may help you gain new insights into what’s going on, get ideas on how to cope with it and help you know you ‘re not alone. People can talk about their feelings, trade advice in a support group, and try to help others who are dealing with the same type of problems. Some people like going out and just listen. And others would rather not be joining community groups at all. Some people are not comfortable with revealing that sort of stuff.
Talk to Others about What You’re Going Through
It is very important for caregivers to talk to other people about what you are dealing with. It is particularly helpful when you feel overwhelmed or want to say things you cannot say to your loved one. Try to find someone you can truly open up to your feelings or your fears.
You may want to talk with somebody outside your close circle. Some caregivers find it helpful to talk to a leader of their faith or spiritual community. You may speak with a counsellor or a psychologist. Such experts can help you find ways to express your feelings and learn how to cope with your situation.
How can others help you?
Many caregivers say they took too much on themselves, looking back. Or they wish they had asked friends or relatives for support earlier. Take an honest look at what you can and cannot do. What stuff do you need, or would you like to do yourself? What tasks can you give up or share with people? Be able to let go of stuff other people can support. You can ask people to:
- Help with tasks such as:
- Talk with you and share your feelings.
- Help with driving sprees such as:
- Doctor visits
- Picking up your child
- Going to the pharmacy
- Search for information you need.
- Update others how your loved one is doing
How employers can help?
Employers should help their workers to strike a balance between the obligations of employment and caregiving responsibilities. Employers support employees to be able to stay focused and productive in their responsibilities at work, as well as at home. Some of the things employers can do for their caregivers employees are:
- Educating and training colleagues: Most managers might not understand the impact of caregiving on employees. It is important to train them on the struggles to balance work and caregiving responsibilities.
- Flexible schedules: Depending on the work responsibilities of the employees, employers can offer flexible work schedules that enables people to work at differing hours or to telecommute for a number of days in a week.
- Connecting to community professionals: Employers are often well connected and employers can help employees find and access available resources such as a psychologist, a geriatric care manager or a nursing advisor.
- Change the approach to paid time off: Employers may offer paid leave as an option to care for dependents or family members.
- Measure how effective your support is working: Ask workers for input on the efficacy of what the organization provides in helping them with challenges they face as caregivers and try ideas for new policies and programs that they would like to have.
Events that change lives sometimes give people the opportunity to develop. They may be helping people see what matters most to them. Many say caring for those with cancer has forever changed them. They used their abilities to protect the one they cherished. And along the way, they learnt more about themselves.