When you’re caregiving for a cancer patient

Effective cancer treatment has come a long way, but news of a loved one’s diagnosis is always an unwelcome shock.

Your early reaction might be numbness. Or confusion. And then you experience a distressing mix of anger, sadness, fear, and anxiety.

If you haven’t been a primary caregiver before, the diagnosis might thrust you into a new role. The nature of the disease means there’s uncertainty ahead, something most of us aren’t adequately prepared for.

That can be overwhelming.

There are lots of decisions to be made and things to coordinate. What about treatment and follow-up care? Since most cancer treatment is done on an outpatient basis, you’ll be planning how to provide additional in-home support to your loved one.

Experienced caregivers know that managing your non-caregiving life – family and job – becomes more challenging. A cancer diagnosis means an extra dimension is added to your role.

You’ll be the emotional backbone for your loved one.

And you might need more support for yourself.

To underscore the importance of your role, there are over 16 million adults in the United States living with cancer (cancer.org, 2019), most of whom have been supported by some level of caregiving. That support can be the foundation of a patient’s recovery.

Make cancer awareness and education an early part of your caregiving journey. October is Breast Cancer Awareness Month, a good time to explore information and resources. Read more in our recent blog.

How it feels to be a cancer caregiver

Caregiving is often physically and emotionally exhausting. When your loved one has cancer, your feelings of anxiety and helplessness can make things worse.

Your initial reaction to your person’s diagnosis might be shock. You’ll have a lot of questions. It can be helpful to take a step back and get as many answers as you can before imagining worst-case scenarios. This is a good first step.

You’re about to become an important part of your loved one’s cancer care team. It’s a demanding responsibility but also an opportunity to make a real difference. Think of your support as the most meaningful contribution you can make to their well-being.

Let’s consider some tips for assuming your new role and being supportive of your loved one.

Learn more about cancer. If you have early access to your person’s health care provider, be prepared with questions. Write them down and be sure to ask for clarification if you or your loved one don’t understand something.

• What type of cancer is it? Where is it located? What stage is it?
• What is the prognosis?
• What are the treatment options? What is the goal of treatment?
• What preparations need to be made for treatment?
• What are possible side effects? Will they affect activities of daily life?
• How can the patient stay as healthy as possible?

If you want to do some of your own research, use information you received from the health care provider and visit reputable sites. If you find conflicting information, continue to rely on the health care provider’s guidance until you’ve had an opportunity to ask them for clarification.

Listen and be present. Listen to your loved one and avoid offering advice. They’re feeling confused and frightened, and your ability to hear and not pass judgment is invaluable. If you’ve gathered information through research, tell them you’ve done so and leave it up to them about whether they want to hear more about what you know.

Aim for business as usual. Chances are your loved one is not suddenly made helpless because of their diagnosis. It’s important for you to help in ways that allow them to do everything they’re accustomed to doing for themselves. Honor their wishes and be available to lend a hand if necessary. The more normal their daily lives can be, the better their chances of feeling they haven’t lost control.

How a caregiver supports someone with cancer

It’s no exaggeration that caregivers must become proficient managers – you may find yourself tending not only to your loved one’s personal needs but also managing their practical daily tasks. You may transition from being an adult child with a family of her own to being the primary caregiver for an older parent. If you are a spouse, that role may fade to the background for a while as you become a nurse, manager, and therapist to your husband or wife.

Tracking and organizing. You may serve as your loved one’s advocate by arranging medical appointments, being present for them, and helping to organize the paperwork that’s part of the treatment process. It can be a complex administrative task with many moving parts, including overseeing medical bills and insurance benefits. Your loved one will be relieved for your help in managing it. 

Information gathering. Make it a point to understand more about your person’s treatment options. Familiarize yourself with the drugs and procedures involved, potential side effects, and special concerns. Know the functions of their health care team – their specialists, dieticians, occupational therapists, and social workers who may be assigned to help navigate the treatment journey. It can be useful to help your loved one document the process:

• Keep a paper or digital journal of health information, names of providers, and comments about the experience.
• Keep a running list of questions that arise, to be addressed at the next medical appointment.
• Take notes when communicating with your loved one’s provider.

Assisting with activities of daily living (ADLs). As treatment progresses, you’ll be helping more with meal preparation, household chores, transportation, and bill paying. Some aspects of personal care might be required, such as bathing, dressing, or toileting. You may need to monitor symptoms or administer medication. These services can also be provided by an in-home care service provider like SeaCare if you need assistance.

Offering emotional support. You’ll serve as confidante and counselor. Reassure them that you’re in this journey with them. Make yourself readily available to talk if they bring it up. They’ll be more open if you offer unconditional support, free of judgment. You must be ready to support their choice of treatment. Your loved one might benefit from joining a support group. Patients of the Seattle Cancer Care Alliance have free access to a wide variety of such groups. Another Seattle-area resource for support groups is Cancer Lifeline.

Providing financial support. You may become the sole wage earner if the cancer patient is your spouse.

How caregivers take care of themselves

Adjusting to a cancer diagnosis isn’t easy. As you think about your caregiving role, you may find yourself relegating your own needs to the back burner. This isn’t sustainable or healthy over the long run, and so you’ll want to establish a routine and get used to asking others for help.

Anyone who’s been a caregiver is familiar with being told to “take care of yourself.” It’s easy advice to give and tough advice to follow. But as a caregiver, your risk of damaging your own health increases sharply if you fail to heed it.

Some new caregivers find that taking care of a loved one, while challenging, is actually a satisfying experience that gives them a strong sense of commitment and purpose. It can be rewarding to enjoy the positive aspects of caregiving, but it’s still possible to push yourself too far.

If your feelings about caregiving are ambivalent, it’s absolutely essential to avoid future frustration by recognizing your limits. Caregiving may not be a responsibility you can assume. There are options, including hiring an in-home care service or enlisting the help of another family member to share the primary caregiving role.

Seattle Cancer Care Alliance offers support for caregivers as well as cancer patients — find links to additional resources at this site.

Read SeaCare’s previously published blogs to learn more about avoiding caregiver burnout and reducing your own cancer risk as a caregiver. You’ll find practical tips for managing your most precious resource as a caregiver: your own health.

SeaCare specializes in the support you need for your loved one and for your own peace of mind. Contact us for more information.

Katie Wright writes about aging and senior wellness from Bellingham, WA. You can read more about her here.