Caring for someone with brain cancer: Not like in movies
Caring for someone with brain cancer has nothing to do with super intelligence or telekinesis, like Phenomenon made it seem – though it may feel as endless as that 1996 movie. In it, John Travolta had an astrocytoma brain tumor, which supposedly stimulated his brain function and enabled him to stay up all night reading books, come up with revolutionary theories, and conduct groundbreaking research. In real life, however, someone with an astrocytoma tumor in the brain is more likely to go on a shooting spree from the University of Texas at Austin Tower, as Charles Whitman did in 1966. Actually, one example is not only fictional but also implausible, and the other is real but on the extreme side of the spectrum. So what is caring for someone with a brain tumor really like?
Let’s have a look first at some of the actual symptoms of brain cancer:
- Headaches, often in the morning.
- Nausea and vomiting.
- Changes in the ability to talk, hear, or see.
- Problems with balance or walking.
- Problems with thinking or memory.
- Feeling weak or sleepy.
- Changes in mood or behavior.
Changes in the ability to talk, hear, or see
That one alone gives us a pretty general idea of the caregiving duties involved. Basically, the caregiver must become the voice, ears, and eyes of the patient. It’s quite a tall order to take over someone else’s senses. Fortunately, the technology exists that can allow even long distance caregivers to, for instance, be someone’s eyes.
Problems with balance or walking
Bill Withers probably put it better when he sang, “Lean on me/when you're not strong/And I'll be your friend, I'll help you carry on.” That’s literally what the caregivers must be there for. Also consider an elegant and useful cane.
Problems with thinking or memory
Many people with brain cancer like to participate actively in the decision-making process when it comes to treatment. However, these specific symptoms can make that difficult. As a result, the caregiver must be in charge of making and keeping doctor’s appointments, remind the person to take their medications – if they have been prescribed any – and so on and so forth.
Feeling weak or sleepy
That’s bad enough as it its, and even worse if we add chemotherapy, which is not only a common treatment for cancer – including brain tumors – but also notoriously though on patients. Thus, it’s the duty of the caregiver to drive the person to the hospital and back, and make sure that they get plenty of rest and don’t overexert themselves.
And those are just a few examples. Clearly, neither could caregiver nor care receiver face these symptoms – or the side effects of treatment for that matter – all by themselves. Support is key. According to the American Brain Tumor Association, “Friends and family can help with many aspects of your care. From attending appointments to helping around the home, it’s important for you to ask for help when you need it.” Additionally, “Support groups, either in person or online, can be a great outlet to share your feelings and learn about what other people are experiencing.” And of course there are also doctors, nurses, and other specialists, as well as social workers, counselors, and even religious leaders (if you want to scrape the bottom of the barrel), all of whom can provide support to a greater or lesser extent.
But the most important aspect is arguably to find a the best neurological treatment center possible, with a multidisciplinary team that offers the most advanced treatment available, and/or rehabilitation including physical, occupational and speech therapy.
How to find a treatment center
- If you have insurance, ask your insurance company which brain tumor treatment centers your plan covers.
- Find out how many brain tumor patients a given treatment center treats in general, and how many with your loved one’s specific tumor in particular.
- A proper care team should include at least a neuro-oncologist, a neurologist, a radiation oncologist, a neuro-pathologist, and a neuropsychologist. How many of these does the treatment center offers?
- Are clinical trials conducted at the treatment center? If so, that could provide your loved one with access to experimental new drugs before the majority of other patients.
On the one hand you want the best treatment money can buy for your loved one. On the other, money doesn’t grow on trees. But there are certain brain cancer-specific options that may help caregivers alleviate the financial burden. For example:
- The Patient Advocate Foundation Co-Pay Relief Program offers co-payment assistance to patients with brain cancer.
- The Merck Helps Patient Assistance Program is now accepting applications (by mail only) for patients in financial need of assistance to cover the chemotherapy drug Temodar.
- Mission4Maureen works to help families with the cost of medical bills, child care, housing payments, utility bills, transportation, medication and other areas related to brain cancer treatment.
- The Friends4Michael Foundation offers children up to 18 with brain cancer non-medical financial help.
- St. Jude Children's Research Hospital provides treatment protocols for pediatric brain tumors regardless of the family’s ability to pay.
- Brain Tumor Drug Copayment Assistance Program provides financial help to cover the costs of treatments for high grade gliomas.
La petite et la grande mort
Another inaccuracy found in Phenomenon is that John Travolta dies peacefully in his sleep after making love to Kyra Sedgwick. First of all, a brain tumor can have negative effects on the patient’s sexual life, such as:
- Emotional disconnection from their partner (who may or may not be also the caregiver).
- Performance anxiety caused by tiredness, discomfort, and mood and personality changes.
- Altered sexual function due to surgery, radiation, chemo, medications, and other treatments.
Since these problems arise from a medical condition and the medical treatments for that condition, they may also have medical solutions – both physically and psychology. Do not hesitate to bring any intimacy issues to your healthcare provider. Moreover, a couple may find new and different ways to be intimate, including holding hands, hugging, massaging, bathing together, etc.
As for the dying part, the brain cancer patient may experience a variety of symptoms in the last weeks of life, and they may include:
- Increased sleep.
- Agonal breathing.
Sometimes all possible treatment options are exhausted and any effort to keep the patient alive only results in prolonged agony. Furthermore, keeping the patient comfortable toward the end is not an easy task. Therefore, the caregiver may consider palliative care. This type of care can improve the patient’s quality of life – or in this case their quality of death, which makes it part of something called end-of-life care, also known as hospice care.
This is a professionally-supported form of caregiving that can occur at home, at a hospital’s hospice unit, long-term care facility, or nursing home. Some hospices are non-profit organizations while others are for-profit, but most are partially covered but Medicare and many private health insurers. Sadly, less than one-quarter of Medicare beneficiaries use hospice benefits; it may because they are under the wrong impression that end-of-life care hastens the end, when in reality what it does is smooth the transition off this mortal coil as much as humanly possible. More specifically, a team of doctors, nurses, home health aides, social workers, counselors and trained volunteers teach the caregiver how to properly care for the brain cancer patient. In addition, the hospice service may provide part-time aids to help with daily chores such as bathing and dressing the person. Ask the hospital discharge planner or a social worker about local hospice services in your community.
The only true exchange that takes place in Phenomenon which can be applied in real life between a caregiver and their loved one with brain cancer is as follows:
George Malley: Hey, would you, uh, love me the rest of my life?
Lace Pennamin: No. I'm gonna love you for the rest of mine.