Being the primary caregiver for someone diagnosed with cancer is not for the faint of heart. It takes physical, financial and emotional stamina. You’ll be a cook, researcher, driver, nurse, organizer, sometimes cancer expert, support system, cheerleader, multi-tasker and more. It’s likely that your role will shift and change often depending on the ever-changing needs of someone in the throes of cancer treatment.
Over my two years as a caregiver, my role changed often, and sometimes in the matter of an hour, during my daughter’s illness after she was diagnosed with Stage IV ovarian cancer. Shortly after her diagnosis in 2009, Nicole made me her designated health care proxy by signing a simple document readily available at hospitals, many physicians’ offices or even online*.
We knew early on that Nicole’s prognosis was very poor, so in addition to ensuring she received the best cancer treatment for as long as she wanted it, it was equally important to make certain her comfort and quality of life was the best it could be for as long as it could be whether that was two months or 10 years. The deal Nicole and I worked out was she would focus on cancer treatment, and I would be an assertive – sometimes aggressive – medical advocate.
There’s no question I learned a lot about ovarian cancer, cancer in general, and the multitude of secondary illnesses resulting from the disease, surgery and laundry list of medications (from chemo to pain medications to Benadryl). In this great database of knowledge, however, probably the most important thing I learned was:
You don’t know what you don’t know.
Yes, it’s a conundrum. I was a good caregiver, and I don’t beat myself up for what I didn’t know. And it wasn’t for lack of caring that some of Nicole’s less life-threatening cancer- and treatment- related ailments were not addressed. Her dedicated team of oncologists, nephrologists, urologists, nurses, and medical technicians were very focused on the more immediate problems: controlling the disease and life-threatening conditions such as blood clots, repeated c-diff infections and treatment intolerance.
In retrospect, though, I understand those less life-threatening but quality of life threatening conditions – neuropathy, lymphedema, chemo brain, extreme fatigue (coupled with insomnia), difficulty adjusting to various ostomies, extreme weakness – could have been addressed had she had access to cancer rehab, though in truth cancer rehab was not readily available here in Northern Virginia at the time. Not only would rehab have reduced the intensity of these secondary illnesses and treatment side effects, the human connection and additional cancer support in a less clinical setting would have been welcome for Nicole.
From a caregiver’s perspective, talking with another person in a more support-oriented role and learning that there were, indeed, ways I could help to reduce Nicole’s discomfort while improving her ability to function independently would have provided me with great emotional and physical relief, and I suspect we would have spent far less time in the emergency room!
Since Nicole’s death in December 2011 at 28 years old, I have spent a lot of time promoting ovarian cancer awareness and making sure that other caregivers have more information from the outset. What I know in retrospect is those secondary health issues are equally important. As your loved one’s chosen medical proxy or advocate it’s important that you monitor the cancer treatments, but one of your most important roles may be finding and suggesting solutions for those impairments you see are negatively impacting your loved one’s life from day to day.
Your role may be very different than the one I played with my daughter, but I can’t stress enough the importance of being a proactive caregiver. Here are a few suggestions that may help you at some point along the way based on what I learned with Nicole and from the many wonderful survivors and caregivers I’ve met in the past five years:
Early on, have a conversation with your loved one to iron out some of the details of your expectations – from both sides – of your role as a caregiver, including how your role may change.
This conversation will probably not come naturally and can be uncomfortable for your loved one and you, but establishing open communication is essential to laying the groundwork should there be times when your loved one is not in the position to make active decisions.
Whenever possible, have someone with your loved one during treatment, whether at doctor appointments, before/after surgery, during chemo, radiation or rehab. If your loved one wants you present but the medical provider does not, consider finding a different provider.
Take notes, get copies of test results and home care instructions so your loved one understands that your insistence on medication or exercise comes from the medical team. (This is that taskmaster role.)
Find out each health care provider’s policy on phone calls should you have questions a day or two later, and don’t be shy about using it.
Being assertive may not come naturally to you, but you can learn. It’s okay to suggest treatments or possible solutions to problems that haven’t been offered, such as cancer rehab, speech therapy or home modifications. The primary cancer care team is more than likely willing to try something even if they didn’t think of it first! If they seem resistant and you believe your suggestion is valid, insist on it.
Oh, and don’t forget to take care of yourself. Easier said than done, I know. But even if you simply meet a friend for coffee once a month, listen to your favorite music when you’re sitting in a waiting room, or go for a short walk every other day, you’ll have more to give when you give to yourself, too.
Claire Hollady provides Marketing and Technical Support to Oncology Rehab and Wellness Resources, and she relaunched one of Nicole’s small businesses in 2011. If you would like to comment on this blog, please email Claire at firstname.lastname@example.org.
*You can read more about the importance of medical proxies next week at Claire’s personal blog.