Caring for someone with cancer, especially pancreatic cancer, can be challenging to say the least. At Project Purple, we believe in lifting up not just the patient, but those who care for them as well. Read on for 10 tips for pancreatic cancer caregivers.
1. Take Care of You, Too
The most important aspect of caregiving is one that most people tend to forget in the process of taking care of the patient. Often, caregivers feel as if themselves and their needs are unimportant in comparison with the patient’s needs. However, remembering to take care of yourself is essential for being a good caregiver. Cancer.gov recommends that caregivers make sure to stay up to date on their own medical needs, as well as emotional ones. They state that getting enough rest, exercising, eating healthy meals, and maintaining a clear schedule for any medications you may be taking are essential.
Caregivers also must manage their emotional well-being as well. Maintaining your mental health can be challenging, especially when you are trying to be emotionally supportive to another person. Cancersupportcommunity.org recommends finding times to take mini-breaks from the caregiving environment. For example, if a patient is resting, this may be the perfect time to go for a walk or take a nap. It is important to recharge your mind as well as your body in healthy ways. Spending time taking care of you allows you to be a more effective caregiver, and gives you the strength needed to continue to fight for your patient.
2. Communicate with your patient
As a caregiver, you may feel the need to take on more than you should. Not only is this determinantal to you, but it can also isolate the patient. If you take on too much, it can strip the patient of their autonomy, worsening their emotional and mental health. As caregivers, it is important to work with your patient instead of for them, setting up healthy boundaries that you both can agree on.
Cancer.net recommends that you maintain open communication with the patient about appointments and schedules, as well as special trips or activities you were thinking about planning. This allows the patient to not only have a sense of control, but can help them get outside of their cancer diagnosis and think about something different. Helping the patient feel in control and humanized, especially when they are in a position where so much is out of their control, can help them maintain a positive attitude.
3. Accept Help
Many caregivers want to be completely hands-on during their patient’s cancer journey. However, if you have a family and a job to maintain, being completely hands-on, may mean being hands-off in other areas. It is important to ask for, and accept help from family and friends. Cancer.gov suggests seriously considering which responsibilities you feel you need to maintain yourself, and which ones you can relinquish to others. For example, it may be that you feel you have to be there for certain doctor’s appointments, however, that means not being able to pick your children up from school. Having a support network helps you prioritize your responsibilities. Just don’t be afraid to reach out when you need it.
Conversely, the site also recommends that caregivers should be prepared for some people in their life to not be able to help them, for whatever reason. We also think it’s important to accept other people’s boundaries, however, if the relationship is important to you, reaching out and talking about the situation may be helpful for you.
4. Stay Organized
There are a lot of little things that pop up when a patient is going through their cancer journey. Making sure that, as a caregiver, you are also keeping up on the ins and outs of a patient’s treatment is important. Keeping medical records, test results, dates, and times for appointments, will help the patient focus on getting well.
Cancersupportcommunity.org states that maintaining an organizational system will allow you and your patient time to unwind, relax, and even plan fun activities for you to do that will take your mind off the stresses that come with a cancer diagnosis. Taking time to plan means that there are more opportunities to take special trips, see loved ones, or just have time to yourself.
5. Stay informed
One of the best ways you can support your patient is to stay informed. As the old adage goes, knowledge is power. Knowing about your patient’s diagnosis, treatment plans, and medical history can help you better support your patient as they navigate their journey. It will also give you the ability to advocate for your patient when they are unable to do so themselves. Cancercenter.com recommends making a daily list of all your tasks for the day as well. They believe this is a great way to stay on top of a patient’s medical needs. Staying informed on your patient’s medical needs takes stress off of them and helps you better understand their needs.
6. Accept your own limits
As a caregiver, you may find it challenging to step back from your role. However, no one can be good at everything. It is important for caregivers to acknowledge their strengths and weaknesses in order to better support the patient. Maybe you are better at organizational tasks, but not as adept at providing emotional care. That’s fine! Delegating and setting boundaries as a caregiver is important because it allows you to focus your energies on the things you are best at, which will be overall better for the patient. Cancercenter.com recommends seriously considering your limitations as a caregiver to avoid taking on too much. Stretching yourself thin will not be beneficial for you, or your patient!
7. Accept a patient’s limits
It is important as a caregiver to keep in mind that your patient will always be grateful for your help, but there may be times they cannot give you the praise or reassurance you may need. Patients dealing with high-intensity treatments may be too tired to notice the small things you do. Sometimes chemotherapy can limit a patient’s ability to taste, and they may not be able to tell you how good a meal was. Cancer.net notes that keeping in mind the patient’s limits, as well as your own, will help you maintain a positive attitude and limit some of the stress or frustrations you may feel as a caregiver.
8. Define your own support system
Finding people you can confide in about the struggles of caregiving is essential for keeping up a positive attitude. Everyone needs to vent, and as a caregiver, it can be hard to find people that will allow you the space you need, whether that is because they care for the same person, haven’t experienced caregiving themselves, or are patients that need your support.
There are several ways that people find support as caregivers. Cancercare.org recommends finding a support group. They believe that support groups can provide a safe space away from the patient that allows a person to feel more free about expressing their frustrations, concerns, and stresses. Facebook groups may also be helpful for some people.
9. Consider outside care options
Even with all the help in the world, sometimes it is better for you, and the patient, to let a professional take over. Though you may have become an expert on how to care for your patient, sometimes symptoms, medications, and the patient’s physical needs change. Pancreatic cancer especially is a rapidly moving disease, so bringing in someone, even for a few days a week, will help you better navigate your caregiving role.
Cancer.net states that professional help or volunteer services do not always have to be medical resources. Sometimes caregivers find that they need outside help with meal-prep rather than medical support. If you are struggling in a particular area of caregiving, perhaps it is time to consider bringing in outside help. After all, you are only one person!
10. Practice Positivity
Though this is last on the list, it is a highly important tip to remember. It may seem obvious, however, caregivers may get caught up in their patient’s situation and forget this very simple tip. Making sure you practice gratitude for the things you do have, while also acknowledging losses can be a great way to right your mental footing. It is important to maintain an upbeat attitude whenever possible, not just for yourself, but for your patient. Cancer.net notes that practicing positivity can help you maintain your calm when dealing with stressful situations. They caution against losing your temper and reacting negatively, because your actions will not just affect you. Learning to reach for the positive amongst a sea of negativity is difficult but it can mean a world of difference when it comes to your approach to your patient’s cancer journey.
Thank you for reading these 10 tips for pancreatic cancer caregivers. If you are looking for more resources to help you through your caregiving journey, Project Purple has several programs you can utilize. Our Patients and Families page provides an overview of the resources we offer.
Our Patient Financial Aid (PFA) program offers assistance to families in an effort to ease the financial burden of cancer. We recently have extended our PFA program to provide food assistance to patients and their families. Our partnership with Nutré will provide healthy and convenient meals to our patients and their families so they can further focus on recovering from pancreatic cancer. Lastly, our Blankets of Hope offers blankets to patients to show that they are not alone in their battle against pancreatic cancer.
You’ve got this, caregivers!