When you become a primary caregiver to a breast cancer patient, you take on the multi-faceted role of advocate, task master, side kick, and companion. With a diagnosis comes many decisions and conversations and there will be a time to be strong and a time to relinquish your own opinions, a time to help and hold on, and a time to let go. In addition to the necessary support that you are giving, there will be the simultaneous support that you need to be receiving. “How can you take time for yourself?” people may ask. But the real question is “How can you not?”
Slow down and sit down and consider the lowdown on all you need to know as a caregiver.
Assess Your Unique Situation
What exactly does being a caregiver entail? How does this affect you, your loved one, and the world around both of you? There are no two situations that are exactly alike, so be patient in understanding your very personal circumstances and what kind of support you can offer.
- Who goes to doctor’s appointments? Ask your loved one how involved they want you to be and how best you can support them. Do they want you to join them and be with them during consultations, appointments, treatments, and procedures? Will they let you talk to their doctor on their behalf? Do they want you to take notes? Would they like you to schedule the appointments?
- How do you handle the treatment decisions? Even if you share the decision-making, your spouse, partner, or family member is the one on the front line of cancer, so their decision is the final say — even if you disagree. Although this may be hard to cope with, remember that the ultimate goal is wellness, both physically and emotionally. Let your compassionate voice be heard, yet have patience with your loved one and give them space to make their own decisions.
- What if they ask me to back off? Always ask if they need your help or support on decision-making. Be prepared to take a gentle step back if you have differing opinions, and support them in their choices. Take an easeful tone when you talk with them about their treatments, and make sure you have their ongoing consent to participate.
- Where can I be most helpful? Support your loved one by assisting them in taking care of the paperwork. Cancer treatment involves a lot of it, and that doesn’t include the paperwork from other areas of life, like bills. Ask them if they’d like to offload that work to you or a financial advisor.
The Energy of Emotional and Physical Support
Although your loved one is going through cancer, you shouldn’t feel guilty for needing support, love, and attention, too. Emotionally and physically supporting someone with breast cancer can be exhausting, so look for a support group in your community – there may even be one specifically for caregivers. Therapy is an essential tool, as well as self-care modalities like massage, yoga, and meditation. Your mental and physical health matter. Don’t neglect yourself in order to feel like you’re being a “better” caregiver.
Caregiver Checklist
The following practical steps can help you plan better, reduce the overwhelmed feeling, and make life easier for both you and your loved one.
- Discuss Side Effects and Support with Your Loved One If you’ve never been through cancer, you may not know where to start and there may be a lot of fear right after a diagnosis. Ask your loved one if they need physical support due to their side effects, if they just need a listening ear, or what they need you to do during different times. Discuss these issues with your loved one so you can better support them.
- Explore Benefits for the Patient Your loved one may qualify for disability, get their medical expenses paid for, and get financial support in other ways too. The assistance is there, and neither of you has to do all of it alone.
- Contemplate Benefits for Yourself You can qualify for benefits as a caregiver – talk with a social worker about possible means of support for both you and your loved one, such as the Family and Medical Leave Act. This federal law entitles you to unpaid leave in order to care for your loved one, without fear that you’ll lose your job.
- Find Local Assistance Support groups provide much needed encouragement and care and a safe space for expressing feelings. This is important for both your loved one and you. There is a wealth of resources online and you can Google local sources too. Additionally, you can reach out to friends and family who can offer assistance, love, and solace in this time of need.
- Handle Household Chores A breast cancer diagnosis comes with tons of medical appointments and treatments, along with side effects from medications, and more. Through all of this, life goes on and there is often a home to maintain. Consider if there is a budget for a house cleaner once or twice a month to do the “deep cleaning.” Are there family or friends who can help out from time to time? Are there older children who can take on a bit more responsibility for the time being? Discuss the situation patiently and compassionately and remember that sometimes not everything is going to be as neat and tidy as it once was.
- Consider Childcare Perhaps you can enroll the children in an after-school program, or hire a nanny or babysitter during the times you and your loved one won’t be around. Pay attention to the family and friends who say they want to help out – approach them sensitively, without pressure when you ask them for assistance. Look into social services in your area that can help with shopping, household chores, and even aid in applying for benefits. This can give you more time in your day to focus on the kids. Check out other support programs, including the Nanny Angel Network. Many of these organizations offer free services to help take care of children during cancer treatment.
- Start Long-Term Planning Prepare for the “best” and “worst” of what could happen by staying on top of all the possibilities: What happens if your loved one has to receive treatment for the rest of their life? What if they experienced side effects due to treatment? What do you do if treatment isn’t working and they’re moved to hospice? Then, make a plan of what you’ll do as their caregiver: Will you go back to work? Retire? Move from your home to another location in order to be closer to doctors? Talk to a financial planner as well as a social worker about various strategies and considerations for both your present and future.
- Have A Realistic Attitude Bring your fears to rest and get into a calmer space by knowing the facts: realistically, 90% of women recover from breast cancer and survive for at least five years, and many live much longer. However, this doesn’t mean that they will be exactly the same as before. Explore the possibilities and treatment plan that’s right and unique to your loved one. Ask questions (if your loved one has given consent) of their doctors when needed. Information helps us stay present and make good decisions, instead of being in a constant state of worry and fear.
- Understand That Life Changes When someone has cancer, their life is split into three parts — life before, life during, and life after cancer. Remember the impermanence of things and how change is constant. This helps us to live in the present and not focus on the past and “what could have been” had cancer not happened. Your loved one may have some long-term side effects after treatment. Or maybe they have a new lease on life and are more carefree than before. Or maybe they’re more cautious now. There is no right or wrong way to live after cancer. Your loved one will have their own way of being with their unique changes. And that’s okay.
- Focus on Nutrition Keep up on good health and optimal nutrition for both you and your loved one. Many treatment centers and hospitals have nutritionists on staff: talk to one about nourishing foods, simple recipes, and supplements, if necessary. Make sure that you check with your loved one’s doctor about what they can and cannot take. Drink plenty of water and other liquids which help to flush out bacteria and to keep the digestion and elimination systems running smoothly. Staying hydrated also reduces the impact of many side effects and help decrease fatigue, constipation, nausea, and weakness. Avoid sugary drinks or soda, and rather consider drinking herbal tea, smoothies, fruit infused liquids, broths and soups, non-dairy or regular milk, or coconut water. Even decaf coffee counts!
Support A Breast Cancer Patient and Support Yourself
Self-care is paramount when you are the primary support for a loved one with breast cancer. Find time to spend with friends, to be out in nature, to nurture yourself with a funny movie or a good book, take a yoga or exercise class, or simply relax on the couch and do nothing. Get plenty of sleep, pay attention to your own good health and treat yourself well. Find your own support through conversations with friends, a spiritual advisor, therapist, or healthcare professional. Don’t hesitate to ask for help for yourself – your physical, emotional, and mental well-being are of vital importance to the person in your care. This is a unique time that can be an extraordinary doorway into healing for the both of you.
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