What is the caregiver’s role?
Certainly, it’s natural that to hear that you have cancer is very overwhelming. It’s very helpful, actually, during those initial discussions with the physician, that the caregiver be there or be a part of those discussions as a second set of ears. It’s a lot of information, it’s not something that’s easily retained. And if you have a second set of ears with you, you then can work together, the patient and the caregiver, to confirm what each other heard and really have a better understanding of what's going to happen next.
What should the caregivers be focusing on?
There are so many ways that caregivers help our patients, whether it’s making sure they have food making meals in some cases, coordinating transportation if needed, setting up appointments, making sure medications are being taken properly or that if there are refills that are needed that’s taken care of timely, communicating with the physicians and nurses as needed for the patient. Another role that the caregiver provides is being a point of contact to other loved ones and family members who are worried and concerned about the newly diagnosed cancer patient or the patient going through treatment. And they can serve as a point of contact for all those communications and that really lifts the burden off of the patient.
As I said that the caregiver often knows the details of that person’s needs and they can help to be an advocate in letting the oncology team know or seeking out community resources for things like financial assistance or if social workers needed or nutrition is a problem. They can really bring that information forward and it’s key to the wellbeing of the patient.
And when you as the caregiver, when you provide these services for your loved one, what does it do? What does it give to them?
It really makes a difference for the patient and their journey. They have a partner that they’re going through this journey with, somebody that knows them and loves them, and it’s priceless. It really takes some of the burden off of that patient and gives them the support, the emotional support that they need to keep moving forward in their treatment.
As the caregiver, what shouldn't you do? What should you avoid doing?
So I have to say, first don’t give up. It can be very challenging and we know that, but it’s just such a valuable role that you're fulfilling. Also, don’t be afraid to ask for help, many times you want to do it all for the patient, but there’s a lot of times other people that would love to pitch in with meals or grocery shopping, that type of thing. And finally, and this is very important, don’t forget to take care of yourself. Many times being the caregiver is a full-time role and people can sometimes forget about their own needs and their own nutrition and their own medical needs. So in that case, neither patient nor caregiver ends up in a good situation if the caregiver hasn’t taken the time to care for their own needs.
What kind of concerns do the caregivers talk to you about?
They often bring us information that we wouldn't otherwise be made aware of. Perhaps the patient is struggling emotionally, perhaps there are struggles within the family, perhaps the patient isn’t really sleeping well or is having more pain than they’re admitting to, or not really eating properly. When the caregiver brings us that information, we can then act on it and develop a plan to meet those needs, provide additional resources. That information is really helpful in providing the best care to the patient.
When folks call the Scripps MD Anderson Cancer Center, after they’re diagnosed, what happens with you as the role of the nurse navigator?
The nurse navigator gets involved very, very soon after diagnosis. And our role really is to be a support for the patient and the caregiver in helping with being an advocate, making sure that tests are done timely, that consults happen quickly. We understand that time is of the essence, and we act with urgency, a sense of urgency to ensure things get moving quickly, timely. We’re also a point of contact for questions or when perhaps there’s multiple team members involved and you’re not quite sure who to call. We will guide you, if you give us a call.
