I moderate an online support group for caregivers whose loved ones have brain cancer -- primary tumors or metastatic disease. As with each population, there are issues and concerns unique to this group, and they tend to become the focus of our work over the course of a 14-week session.
Like most caregivers, brain cancer caregivers face a challenging set of circumstances that impact every aspect of their lives, from practical day-to-day functioning to emotional and spiritual challenges. The devastating combination of cognitive impairments and mood and personality changes can be overwhelming. These caregivers often find themselves grieving a terrible loss: the emotional loss of a loved one who remains very present in their lives -- a source of continued love, in many cases, but also an exhausting and unrelenting need.
"John is really declining, and he's not even close to my pre-tumor husband," said Lisa, 45. "I've already grieved so much for the man I used to know and feel completely consumed by this new life where I just take care of this dependent, helpless soul, whom I still love, but who's so very different from the man I've lost already."
The question that comes up again and again in these groups is why -- not "Why did this happen?" but "Why don't the professionals tell us what to expect? Why don't they warn us? Who can we trust to help us anticipate and understand what is going on and how to manage it?"
Terry, 54, wrote:
I am exhausted, worried, and wondering what in the world is going on here!!!! I have a husband who doesn't seem to give a [expletive] about me, our animals, our house, our yard (5 acres), my car, or anything for that matter except this failing business that is putting us farther and farther in debt!! I wish they'd just come take it!!! They've threatened but nothing yet! He can't work, he can't even think straight and I can't say a word about it!! Am I going crazy? We have been together almost 20 years; married almost 18 and I don't even know who he is or whether I even like him. I'm sure I'm not making any sense, but I think I need a vacation!!! In a mental hospital or something... this is nuts! As I look back at my calendar it amazes me how fast things have changed.
Caregivers for brain cancer survivors, on or off treatment, need education and support from the medical team. They need to have access to nurses and other medical professionals who can speak with them privately and candidly to help them understand what areas of the brain may be affected by cancer and what role those areas play in cognitive functioning and mood regulation.
They need to understand all the potential side effects of the treatments their loved ones will undergo. This means not just the main physical issues that may arise, but also the potential for confusion, memory problems, and other cognitive issues, as well as the potential for emotional liability, irritability, paranoia, anger, depression, and anxiety (particularly when steroids and anti-seizure medications are a part of the picture).
Patients and caregivers alike depend on their medical team to provide a roadmap, directions, and support as they face the long journey through brain cancer. Healthcare professionals may fear that too much information will overwhelm, but knowledge truly is power for caregivers. It gives them the foundation to make sense of the often chaotic and bizarre changes they will experience in their loved ones over time. From this foundation, they can build strategies for coping and networks of support.