Extra attention and frequent conversations with the medical team may help ease challenges.
Mary Bullard of North Bellmore, N.Y., was her brother John’s caregiver for nearly 51 years, lovingly supporting him until he died from lung cancer in March at age 81. John, who lived most of his adult life in a group home, had significant mental impairment as a result of a brain injury sustained during infancy, so he relied on his sister for almost everything.
Bullard’s caregiving responsibilities increased considerably when her brother received his cancer diagnosis in 2010. She accompanied him to all of his medical appointments, which included radiation treatment, and gently reassured him when he became distraught.
“It required a lot more effort on my part, trying to adjust life and work,” Bullard says. “My boss was understanding, but I’m the company’s bookkeeper, so I needed to be there at certain times. Caring for John when he developed cancer required me to change my whole way of life.”
When a person with mental illness, such as severe depression, schizophrenia, bipolar disorder or cognitive impairment receives a cancer diagnosis, the impact on caregivers can be dramatic. For the patient, it can mean a less successful outcome: A 2008 study published in the Canadian Journal of Psychiatry found that the cancer death rate for males with some form of mental illness was 72 percent higher than for those without, and for females was 59 percent higher. And for the caregiver, it can mean more work, stress and anxiety.
According to some experts, caring for a patient with mental illness or cognitive impairment and cancer presents unique challenges, depending on the patient’s condition. An individual with severe depression, for example, may become less vocal or expressive in interactions with physicians and others, says Holly G. Prigerson, PhD, director of the Center for Psycho-Oncology and Palliative Care Research at the Dana-Farber Cancer Institute in Boston.
“When a patient meets criteria for a major depressive disorder, the family caregiver has to become more assertive and more vocal in expressing to the provider what the patient may want,” Prigerson says. “The caregiver often becomes more instrumental in orchestrating care.”
Individuals who are depressed may also be irritable and difficult to be around at times, says Bob Aiello, PhD, a psychologist in private practice in Raleigh, N.C. “It’s important that caregivers have their own place separate from the patient to sort things out, so they can manage without getting into a conflict with the patient; that doesn’t really help anybody,” Aiello adds.
I tried to make him understand that when he did hurt to let me know and he would get medicine to make him feel better.
For people with schizophrenia, the physical effects of cancer and its treatment may spark a re-emergence of symptoms, such as delusions, hallucinations, thought disorder and erratic behavior, all of which can make a caregiver’s job more difficult, Aiello says. When this occurs, pharmacologic support and the involvement of a psychiatrist or physician can often help the patient adjust more effectively. Additional challenges posed by mental illness or cognitive impairment may include:
> Memory loss. This can affect medication management and daily activities, such as eating and bathing.
> Difficulty communicating. This is common among individuals with a severe mental deficit or advanced dementia and can affect the caregiver’s ability to manage the patient’s pain or track disease progression.
> Increased patient anxiety as a result of the cancer diagnosis. This was something Bullard dealt with when her brother became ill. Knowing that his inability to understand what was happening around him made him extremely fearful, she says. She decided to not tell him about his cancer diagnosis.
“Every time he had some pain, I would say, ‘We’re getting older and these things happen,’? ” Bullard says. “I tried to make him understand that when he did hurt to let me know and he would get medicine to make him feel better. But he knew something was wrong near the end because he kept telling me he wanted to go home to our mother, who had passed.”
Bullard made the equally difficult decision not to proceed with surgery because she knew her brother wouldn’t be able to deal with it. “When they did the biopsy, he was in such pain that he cried like a baby. All I could do was hold him,” she recalls. “I just couldn’t put him through that again.”
There are strategies caregivers can employ to make these challenges less difficult. Monitoring mental status over time, for example, can provide a clearer picture of a patient’s capabilities, especially regarding their involvement in their own cancer treatment. Long-term cognitive monitoring can also help clarify the degree of a patient’s impairment if afflicted with a type of dementia, such as Alzheimer’s disease.
Prigerson advises caregivers to consult with their loved ones on a regular basis to make sure that the patient understands what is happening and can participate fully in his or her care. Cognitive impairment, depression, poor concentration and anxiety can quickly shift the burden of responsibility from the patient onto the caregiver, Prigerson says.
Regardless of whether cancer treatment is long- or short-term, caregiver advocates recommend maintaining detailed records throughout the process, especially regarding medication use. This is particularly important for caregivers of patients with mental illness or cognitive impairment because of the risk of an adverse interaction between certain drugs used to treat mental illness and cancer therapies.
If communication becomes difficult because of depression, cognitive impairment or other factors, it may be helpful to convey details in a way that patients can understand them. Writing things down for patients with memory issues can also be useful, especially for things such as taking treatment medications on a regular schedule.
And should a patient’s mental illness be incapacitating, Aiello suggests the family caregiver pursue healthcare power of attorney so that he or she can legally make decisions on the patient’s behalf. “That can be tremendously helpful in facilitating things with care providers,” Aiello says.
I encourage all caregivers to focus on the small things they can do and not get overwhelmed.
Caregiving, by its very nature, is frequently exhausting and stressful, but the effects on caregivers of patients with cancer who also have mental illness or cognitive impairment can be particularly debilitating, some experts say.
“You don’t think about yourself,” Bullard says. “You put your own needs aside and just think about the person you’re taking care of. After John died, I had to rest and try to get my strength back. It still takes a toll on me.”
Bullard’s experiences are typical, says Jo McCord, a gerontologist and family consultant with the San Francisco-based Family Caregiver Alliance (caregiver.org). “Self-neglect is a big problem,” she says. “Caregivers don’t take the time they used to for themselves because all of their time is spent caring for the patient.”
Caregiving can inflict a social toll as well, McCord adds. For example, caregivers often must quit their jobs, meaning a loss of immediate income and of financial security in retirement. Relationships with other family members may also suffer. “We see a higher incidence of depression among caregivers, and their life expectancy is less,” McCord says.
McCord’s solution: Set realistic caregiving goals, ask for help when needed (and accept it when offered), and get respite when necessary.
“[Caregiver] support groups can be very helpful because you can learn from others who are better skilled at adapting to caregiving,” McCord says. “You don’t have to reinvent the wheel.”
The worst thing a caregiver can do is succumb to guilt, McCord says. “Guilt is almost crippling to some caregivers because they feel bad that they are not sick,” she says. “I encourage all caregivers to focus on the small things they can do and not get overwhelmed.”
Bipolar disorder and schizophrenia can present their own unique challenges, Aiello says. Individuals with bipolar disorder may become more depressed or more manic as a result of the stress cancer and its treatment places on the body. Both extremes may adversely influence treatment by making the patient less able or willing to take medications as needed or attend medical appointments.
“[Mood swings] can be very difficult to deal with and really require psychiatric intervention,” Aiello says. “Medication is probably going to be needed to help the patient cope.”