Recently a colleague of mine passed on after a six-year-long battle with brain cancer. He was in his thirties and left behind two young sons and his wife who is a living angel. Personally, there are many important things I will take away from this. He never lost faith. He lived his life with passion and fought to the end. He was always happy and thankful for all that he had in his life.
Professionally, I had some takeaways as well. My colleague worked in pharmaceutical marketing and certainly was an educated patient. However, his wife was the pillar who held everything together. Caring for him, understanding and researching treatments, getting him into clinical trials, fundraising…whatever it was, she was essential to it all.
Sometimes illness can be as challenging for the care partner as for the patient. While it certainly is important for the patient to understand their treatment and side effects, it is also critical for the care partner to equally understand. Additionally, they need support to help their loved one handle treatment, as many times, especially with cancer, it can be a difficult process.
When you consider that 29% of the US population (over 65 million people) provides care for a chronically ill family member or friend, this is a large audience with a tremendous need for resources. These people spend an average of 20 hours per week caring for their loved one, all while potentially balancing a job, care of their children, and the stress of everyday life.
So how can we help care partners? When we develop resources for patients, we should address the needs of the care partner as well. Care partners need the same information that patients do, such as disease understanding, treatment expectations, and side effects. As for patients, all care partner materials should be presented in a health literate way while utilizing adult learning principles such as analogies or storytelling to aid understanding.
Additionally, care partners can benefit from help with the following:
Practical tips on:
- How to give care
- Managing appointment schedules
- Navigating insurance claims
- Accessing treatment
Emotional help with:
- Providing emotional support to the patient
- Recognizing the signs of depression in the patient
- Coming to terms with the diagnosis and being realistic about it
- Enlisting the support of others for driving, cleaning, meals etc
- Utilizing social media to garner support from friends and family
- Finding support groups
Personal needs such as:
- Taking care of themselves and their health
- Staying positive
- Keeping up with their own interests and activities
While nothing can ease the pain of having a loved one who is ill, certainly the right resources can help care partners cope. In turn, the care partner will be better enabled provide emotional and physical care and help the patient with their treatment.
Mary Lou Szekeres
Client Development Manager