Tips For Caregivers of Cancer Patients

It's a good thing that Jessie's mom never played softball as a kid or teenager.

If she had, the figurines lining the shelf just 4 feet in front of Jessie would have been reduced to a pile of broken pastel glass.

But they were still standing in the same spots, gazing off into various directions like the compliant statues they were.

Jessie also noticed that the plate used to launch the assault was plastic, not a fancy stoneware plate from the dining room cabinet.

Way to go, Aunt Toni, Jessie thought. Thanks to you, my mom's finally learning how to process some of this cancer anger. When she's upset, she knows to throw plastic, not ceramic.

Three Fundamental Tips

Jessie, 20, could do without the commotion her mother's outburst caused. But if there's one thing Jessie has learned since her mother was diagnosed with breast cancer three months ago, it's that a return to “normal life” may be some time off.

In the meantime, her mother must try to be open and honest with her emotions—and let them rip when she comes close to the boiling point.

It's one of the “household coping rules” that Toni (Jessie's aunt) has set for their little trio with the guidance of the American Cancer Society.

Like other tips for caregivers, this one may seem tailored more to the patient. And maybe it is, fundamentally.

But as most families soon learn, everyone near the cancer patient benefits when the patient is in a calmer state of mind. In fact, if Toni had to impart advice to other cancer patients and their caregivers, she would say it's essential to:

• Be there to help the patient cope with the sometimes raging emotions that cancer can
  elicit.
• Keep the channels of communication open—and never accept sullenness as a response from a
  cancer patient.
• Remember to take time for self-care. It may feel indulgent, but everyone benefits when the
  caregiver's physical and emotional engines run on all cylinders.

Caregiving Is a Growing U.S. Trend

Toni represents a growing movement toward unpaid family caregiving in the United States. She is one of about 43 million caregivers in the country who provide about $470 billion of unpaid assistance. This is according to the AARP Public Policy Institute's 2019 "Valuing the Invaluable" series on the economic value of family caregiving.

Like Toni, most (61%) family caregivers are women, and more than half of family caregivers are age 50 or older.

They may hold part- or full-time paying jobs, but their commitment to their loved one's care is significant: They spend an average of about 24 hours a week with their loved one. Nearly 25% of caregivers spend 40 hours or more weekly in their family member's company.

For these caregivers, it's not like a full-time job; it is a full-time job—which they often do for an average of about four years before they resume their normal lives. Roughly 40% of caregivers stay in the role for less than one year.

The fact that these caregivers toil unpaid makes them informal caregivers. By contrast, formal caregivers, such as nurses, are paid and are professionally trained to care for cancer patients.

To informal caregivers, semantical differences are the only real ones that exist because their job descriptions are practically identical. Caregivers usually:

• Provide basic medical care, such as giving medicine and shots and tending to wounds
• Assist with personal hygiene needs, such as bathing, dressing, and shaving
• Prepare meals
• Do household chores like dusting, cleaning, and laundry
• Pay bills
• Run errands
• Provide rides to stores and doctors' appointments
• Lend a shoulder to lean on and cry on and a ready ear to listen
  

Caregivers Face Burdens

Perhaps most troubling about the workload is that most family caregivers get little training or instruction, even in performing tasks that were once left to trained professionals, the AARP report says. This means that family caregivers learn most of what they need to know on the job.

This dynamic is quite the opposite of most professional jobs, where people are schooled and then enhance their education with on-the-job learning experiences.

Add to this lack of basic training some disturbing dynamics and you can see why the caregivers of patients can use all the help (tips, pointers, lessons, and even cautionary tales) they can get. The AARP report shows that family caregivers:

• Face short- and long-term financial difficulties, especially if they pause or leave the labor force to address caregiving demands.
• Put their own nuclear families at risk if they sacrifice workplace benefits while they care for a loved one.
• Spend an average of about $7,000 a year on care-related costs.

It doesn't take great foresight to see that if a caregiver is already struggling with the emotional and physical difficulties of caring for someone with cancer, the financial difficulties add rougher edges to
the picture. It's then that the responsibility may start to feel like a genuine burden.

These resources aren't strictly financial in nature, either. In fact, the institute says a caregiver's burden often manifests itself through realities that money can't fix: Anxiety, depression,
diminished quality of life, and post-traumatic stress disorder.

To some extent, caregivers are likely to feel the burden lift, even slightly, by some of the benefits they reap along the way, such as:

• A closer bond with their family
• An awareness of the appreciation they're engendering
• A sense of purpose
• The satisfaction of resetting life's priorities
• Perhaps a renewed sense of spirituality

Even still, it doesn't take foresight to see the cancer patient and the caregiver as similar to two speeding trains, each hauling their own emotional payload and rushing straight toward each other. Real chaos can erupt, which is no way for anybody in the family to live while a cancer treatment plan proceeds.

Fortunately, the crisis can be averted or defused with a three-step plan of action, beginning with understanding the reactions people often have when they receive a diagnosis of cancer.

Tips to Deal With Cancer Responses

The caregiver is right to assume that a prevailing attitude probably has permeated the atmosphere by the time they arrive on the scene. This doesn't mean it's set in stone and can never change. But change can be every bit as difficult as it's cracked up to be.

Identifying this attitude and understanding what's behind it is one of the first tips the American Cancer Society offers caregivers. It's important, particularly because it often doubles as a coping mechanism for the cancer patient. The four responses are:

• Anger and frustration, which cancer patients tend to unleash on those closest to them (with words or objects, like plates). These people are “safe outlets.”
• Passivity, which can extend into childlike behavior. The patient may feel so weak and helpless that they may begin to behave this way by looking to others for help with even the most basic tasks.
• Fear and anxiety, which manifests in the patient's reaction to most other life events, too. Cancer has conditioned them to view life through a fearful prism.
• Self-blame, even if there is nothing the patient did or did not do to get the disease. This response gets more complicated if the caregiver joins the “blame game.” In this case, it makes sense to air all these feelings and move on. As many people say, “cancer is a marathon, not a sprint.” Caregivers need their energy for the journey ahead.
  

Tips to Cope With Emotions

Some basic but crucial coping tips should help get that journey off to a good start. When
a cancer patient is sad, depressed or angry:

• Remember that feeling sad or even helpless is normal and should get better as the patient
  receives treatment.
• Encourage regular and mild exercise.
• Engage the patient in positive conversation and activities they enjoy.
• Suggest joining a cancer support group.
  

When the patient is feeling fear or anxiety:

• Listen carefully without discounting any feelings.
• Encourage deep breathing exercises. They really can help.
• Turn to meditation or prayer if it helps.

If the patient experiences panic attacks:

• Remain calm and speak softly.
• Stay with your loved one until the attack passes.
• Check with their healthcare provider to ensure the symptoms are not caused by a medical issue.
  

Try not to:

• Let the patient keep feelings bottled up inside. But also don't goad the patient into talking until they're ready. It's a tough balance, so go with the flow and be encouraging.
• Tell the patient to “cheer up.”
• Compare one cancer patient to another. Even if your intentions are good, comparisons often don't end well.

Tips to Communicate Effectively

Many caregivers admit that their “communication strategy” develops naturally, just as it does with their friends, coworkers, neighbors, and other relationships in life. It evolves over time, without much of a plan.

Humans are often good at adapting to their circumstances, which is sensible until you consider that the stakes are higher, and emotions run higher, with cancer. So the American Cancer Society recommends that caregivers set some communication ground rules.

Communication will most likely form the cornerstone of everything you do (even if you're so tired at the end of the day that you can barely grunt an upbeat “Mmm hmm.”)

Though your ground rules should be your own, the society suggests they might include such tenets as:

• Talking to the patient is important, but listening is vital.
• Set aside your own feelings (and opinions and fears) and listen to the patient's point of
  view.
• Ask for clarification or examples to ensure you understand exactly how the patient feels.

Once you get started, speak clearly and with specificity. Unless you happen to be a career diplomat, it may take practice or several different approaches. You'll figure it out, especially if you remember that it's OK to stumble over your words. Besides, the exact words you use may be less
important than the sincerity with which you say them.

You're likely to do more good than you know by reassuring the cancer patient that they are your primary concern. Say something like:

• "I will help you through this. I may do the wrong thing sometimes, but I'll always do my best for you."
• "We'll get through this together. I don't have all the answers, but I do have your best interests at heart."
• "This is a scary time for both of us, and you're not alone. I'm not going anywhere, so let's commit to being open with each other no matter what.”

Many caregivers would probably agree that they'd rather deal with “too much” talk than with a cancer patient who clams up, withdraws, and refuses to communicate. Biding your time until the patient is ready to open up can be as excruciating as noticing that only the sound of the ticking
mantel clock is filling the room. Other tactics may help break the logjam:

• Acknowledge that you see the patient is distressed. Suggest that they might feel better if
  they share the problem with you.
• Point out that they need all their energy to fight the cancer; you're there to help them slay ancillary problems.
• Calmly point out how the absence of communication is affecting both of you.
• Invite a trusted friend or family member for a visit. They may be able to break the verbal impasse simply because they're new to the environment.

Tips to Recharge

The presence of that person may remind you of “the good ol' days.” And instead of lifting your spirits, it may deflate them. If so, consider it another reminder that caregivers need time to recharge their emotional batteries. Think of it as a necessity, not a luxury.

It can be easier to agree with, in theory, than to put into action. But whether you take a few minutes every day (to take a walk or a nap) or take one-half day every week (to go shopping or for a long bike
ride), think of it as the respite time that will prevent you from getting burned out. You're pacing yourself for that marathon.

How you deal with any ensuing guilt for taking a break may take some practice, but it's worth the effort. Or try this: Think about how many employees you know who feel guilty about not working
seven days a week. Just as employees take for granted that they will have time off every week, caregivers should, too.

A simple change of scenery can foster a new perspective or help focus a fresh pair of eyes on a festering problem. It happened to Toni, when she entered her sister's house after a three-day weekend. She was greeted by shards of stoneware on the kitchen floor—soon after her sister got her cancer diagnosis and started throwing dishes to release her frustration. That night, Toni packed up most of the expensive stoneware and put it in storage. The next day, she bought an inexpensive set of plastic dishes.

When the mood is right in the house, Toni reminds her sister that the cheaper dishes are temporary—just like the cancer. In time, Toni will return the fancy stoneware to the table—just as soon as
they defeat the cancer together.

Helpful Resources

There is nothing good about having cancer. But at least plenty of help is available for patients and caregivers. These seven resources can help sustain you through your cancer journey:

American Cancer Society Programs and Services: 1-800-227-2345

Find programs and services to help understand cancer, manage your life through treatment and recovery, and find the emotional support you need.

CancerCare: 1-800-813-4673

Learn about free, professional support services (online, telephone, and in-person) for
caregivers and loved ones.

Caregiver Action Network (CAN): 1-202-454-3970

Join this network to become connected to and find support with other caregivers.

Family Caregiver Alliance (FCA)/National Center on Caregiving: 1-800-445-8106

Sort through information and resources for long-term caregiving and to learn practical skills.

National Alliance for Caregiving (NAC): 1-301-718-8444

This non-profit coalition of national organizations focuses on advancing family caregiving through
research, innovation, and advocacy.

National Cancer Institute (NCI): 1-800-422-6237

This source offers up-to-date cancer information for patients and their families.

National Family Caregiver Support Program: 1-800-677-1116

The Administration on Aging (www.aoa.gov) offers services and local respite programs to ease caregiver anxiety, stress, and depression.