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READ MOREPublished on November 23, 2022 in Educational Resources, Caregiving
An estimated 700,000 Americans are living with a primary brain tumor in 2022. For each patient with a brain tumor, at least one loved one may provide support as a care partner. Unpaid caregivers have a plethora of responsibilities to help care for a family member or friend throughout their brain tumor experience, in addition to their own day-to-day tasks.
“As you can imagine, it was hard,” said Bryan H., who cared for his wife Michelle after her glioblastoma diagnosis. “I had my full-time job. I had to take care of the kids and her. I had to get her to appointments.”
Provided unpaid care to an adult or child with special needs in the past year.1
Of family caregivers are also working.1
Of cancer patient caregivers experience anxiety.2
Reported a negative impact on their own mental health.3
Many care partners of patients with brain tumors will put their own care and concerns on the back burner to focus on their loved one, frequently treating their own physical and mental health care as an afterthought.
“Looking back, I think the biggest thing you fail to do as a caregiver is also to take care of yourself,” said Jessica O., whose son was diagnosed with a brain tumor last year. “If you, as a caregiver, can’t take care of yourself, first and foremost, you can’t take care of someone else. That was a tough lesson to learn.”
A care partner can greatly benefit from receiving support from their community to help lighten their load. Explore these suggestions on how friends and family can support a caregiver.
Friends and family can support a care partner by offering to stay with their loved one, their kids, or both to give them a much-needed break.
“One of my kid’s kindergarten teachers was a big runner and knew how important running was for one’s mental health,” Bryan explained. “If I needed to go for a run so that I didn’t go crazy, she would come over to watch the kids for an hour or two.”
If the individual needs a higher level of care than you can provide, offer to hire a private nurse for a few hours.
Taking a mental break can be a refreshing experience for a caregiver. A quick outing for coffee or a meal can be a brief reprieve.
“Moms think we can do it all, but we can’t,” Jessica said. “I started accepting my girlfriends’ invitations to grab a coffee or have lunch. My support system really has made all the difference this year.”
While you’re enjoying a coffee or meal with your friend or family member, just listen. Avoid interrupting them, passing judgment, giving unsolicited advice, or going on and on about your struggles. A listening ear is always deeply appreciated.
Support a care partner by offering to run errands for them or help with tasks. You can bring their dog to the groomers, pick up groceries, take their vehicle for an oil change or a car wash, or handle their dry cleaning. It’s also easy for chores to back up at the caregiver’s home, so help could look like either paying someone to provide a service or doing it yourself.
If a patient is in the hospital, you can offer to help with transportation. If a parent is in the hospital and the family is trying to maintain a relatively normal routine for their kids, it might look like helping with carpools or extracurricular activities or providing child care after school.
When offering to run an errand or handle a chore, be specific about your intention to help. Avoid vague statements like “reach out if you need anything,” which puts the onus on the care partner to identify their needs. Instead, ask if you can help with a specific and actionable task. For example, say, “Can I go grocery shopping for you this week?”
Suggest an app like CircleOf, ianacare, or Lotsa Helping Hands that aims to help caregivers consolidate tasks and appointments to make it easier to request and organize rides, meals, child and pet care, errands, and more. You can offer to help them set up the app, show them how it works, and help manage it as an organizer so that they don’t have the mental load of figuring it out on their own.
If you notice a need that keeps coming up in conversation, research resources that may provide the support they need.
According to the CDC, “regular physical activity is one of the most important things you can do for your health.” Finding time to actively move one’s body can be challenging as a caregiver.
Encourage your friend or loved one to join you for a walk, run, bike ride, tennis, yoga, gardening, or another outdoor activity. You can offer to do it in their neighborhood to make it more convenient for them.
“I’m not that good at meditating,” said Liz P., who cares for her husband with anaplastic ependymoma. “Doing something physical helps shut out the other parts of my brain and distract me.”
If you know a caregiver who loves to be active, offer to train with them for an upcoming race. (If you’re looking for an opportunity, NBTS has a team of endurance athletes who train and fundraise, called Gray Nation EnduranceTM.)
“I thought training for a marathon would allow me the time to get back to my baseline — back to the person I was before this diagnosis happened with Chase,” Jessica said. “I could invest my time into something that I love while giving back and helping fund research for brain tumors and support for caregivers.”
An estimated 61% of caregivers also work1, creating minimal free time in the margins for meal prep. Dropping off a meal or making a freezer meal that they can easily use in the future can give them extra time back in their day.
“During treatment and after my wife passed, friends and relatives organized meals,” Bryan said. “Every couple of days, we had meals coming.”
Most people think of dinner when they want to deliver a meal, but breakfast options are often overlooked. Breakfast items like baked goods, egg bites, or casseroles that are freezable and easy to heat up can be quite helpful.
If the care partner and patient are spending a lot of time at the hospital, creating a Meal Train can make it easy for other friends and family to support them with the gift of meals.
Look at other organizations that may be able to drop off a meal as part of their services. For example, Lasagna Love volunteers will deliver a lasagna to families “in need of some extra love and kindness.”
Most of all, tune in to the needs of the caregiver. It is not helpful to overwhelm them with more food than they need. Depending on their situation, a gift card for a food delivery service or grocery store could be more beneficial and offer greater flexibility.
“When my husband was diagnosed, I was clear that I didn’t want people bringing food because I wanted to maintain as much normalcy as possible for my children,” said Holly G., whose husband had glioblastoma. “My friends and family collected money and got gift cards to Chipotle and the local supermarket.”
Caregivers can get so focused on supporting their loved one that they neglect their own needs. Nearly four in 10 caregivers “consider their caregiving situation to be highly stressful.1” If you sense that your friend or family member may need support from their health care team, encourage them to reach out and schedule an appointment.
You can offer to go with them to the appointment to help keep them accountable or to help with transportation. Additionally, you’ll want to consider covering care for their loved one or kids so that they can actually make it to their appointment.
For some care partners, it may look like scheduling an appointment with their own primary care physician to discuss medication that may help their situation or other physical concerns they may have. For others, it may be urging them to keep their standing appointments with a therapist.
“It got to a point for me, within the first three months after Chase’s hospital stay, that I realized I had a big anxiety issue,” Jessica said. “I wasn’t taking care of myself. I didn’t want to get up off the couch and do anything. At that moment, I realized that something was very wrong. I realized I needed to talk to my doctor about starting medication to help me be the best person I could be.”
What does the care partner in your life enjoy as a hobby or self-care activity? Cover the cost to help make that act of self-care possible. When offering an opportunity for self-care, be prepared to help with respite care or child care so they can accept your offer.
According to the National Alliance for Caregiving and AARP 2020 report, one in five caregivers reported “high levels of financial strain” due to their caregiving, and one in four care partners “have taken on more debt.” Even if the caregiver had the time to enjoy some self-care, they might not be able to afford the activity.
“When your finances are shaky, it creates stress between relationships and the person diagnosed,” said Katie M., whose husband has glioblastoma. “I’m sure it impacts their quality of life, and it’s the one thing that there is no medical intervention for, but just talking about it and giving some support can really make a difference. I know it has for us.”
For example, it could look like gifting a service at the local spa if you know that is something they would enjoy.
“I also received gift cards for manicures, pedicures, and massages, which were really nice,” Holly said. “I liked those things because they can provide other kinds of support.”
For others, it could be purchasing tickets to a local sporting event, concert, or movie. If cooking or art is their passion, find a local class they could attend.
Above all else, listen and look for opportunities to provide support based on their needs. Avoid giving unsolicited advice that may be inappropriate for their particular situation.
Keep in mind that they may not choose to accept your help, and that’s ok. Do not force it, but continue to connect with them, be a listening ear, and periodically offer help.
TAGGED WITH: brain cancer, brain tumor, Cancer, caregiver, caregiving, care coordination