Caring for someone with pancreatitis can be difficult. It is especially difficult to care for someone living with a chronic, debilitating condition. Caregiving can include many functions. You may have to attend to the person’s needs, provide transportation, participate in doctor’s visits, and help the patient manage the day-to-day anxiety and exhaustion associated with a chronic condition like pancreatitis.
People suffering from pancreatitis are often living through a roller-coaster ride of pain and anxiety. Caring for someone with pancreatitis is a big responsibility. It is important to acknowledge and support the emotional journey of caregivers.
It is normal for caregivers to experience emotions like fear, worry, frustration, resentment, and exhaustion. Here, we offer some tips to help you in your caregiving role. We also share free resources you can consult to help someone living with pain.
Back to Basics: What is pancreatitis?
Pancreatitis is a complex disease that is not widely understood. So, it’s okay to draw a blank when you first hear of it! However, you may find it helpful to learn about the condition, factors contributing to it, and ways to manage the disease. Importantly, it will help you better understand the disease and can help you feel more in control. It can help to learn which medications and interventions are helpful to manage the different symptoms of pancreatitis.
Be Clear About Your Role as a Caregiver and Ask for Help
Supporting an individual living with pancreatitis can include many different responsibilities. It is okay to ask for help. The Patient Advocate Foundation offers many resources from financial assistance to employment.
If you are not the primary or full-time caregiver, ask what help is needed and what role you can play in supporting the person living with pancreatitis. Offer to substitute for the primary caregiver when they need a break.
Advocate
Be the patient’s advocate in the doctor’s office and demand better care. Lobby on behalf of the patient in the emergency room when seeking relief during a pain episode. Talk to insurance providers about reimbursements.
Pain Champion
Help the patient manage a pain episode. Guiding them through the different pain strategies that may have been laid out by the doctor.
Chauffeur
Prepare for and transport the patient to their consults, appointments, and pharmacy visits.
Coach
Help the individual with managing anxiety and help them demand better care in a clinical setting or reasonable accommodation at work.
- How can I support you?
- Offer something concrete that makes it easier for people to say yes, like “I am cooking chicken today, should I bring you some?”
- I am looking forward to seeing you/going out with you. However, I understand if you have to cancel on short notice.
- Ask the patient if they feel well enough to follow through with a plan, and be patient if they have to cancel or reschedule.
Be Sensitive and Manage Your Expectations
Here are a few things to consider:
- Individuals with pancreatitis should not smoke or consume alcohol. Therefore, don’t smoke or drink alcoholic beverages in their presence.
- Most pancreatitis patients have to deal with severe, debilitating pain of varying intensity. Pain affects morale and well-being. It causes depression and anxiety. Be sensitive and patient when the individual is experiencing a pain episode.
- Individuals living with pancreatitis can have sudden onsets of pain or digestive complications, such as nausea and vomiting. Be flexible when making plans and understand that dealing with a chronic condition will sometimes result in cancelling or changing plans.
Free Resources to Help Someone in Pain
Patient Advocate Foundation Case Manager
PAF Case Management is free for patients and families living with a serious or chronic health condition. To get services, a patient must be in, just starting or just ending treatment for a serious health condition.
Pain Management Guidelines for Children
Read the recommendations that health experts propose to manage chronic pain in children, according to the Canadian organization Solutions for Kids in Pain.
Avoiding Caregiver Burnout
Caregivers of those suffering from chronic and/or debilitating illnesses like chronic pancreatitis have an immense role that comes with its own unique challenges. Here are some tips for avoiding caregiver burnout while caring for someone with pancreatitis:
- Define your limits realistically. Regularly think about how you’re feeling.
- Care for yourself. Eat healthy, sleep enough, and do things you enjoy.
- The little things matter. Create a list of all the ways you are helping your loved one.
- Keep an open mind. Chronic pancreatitis is a progressive and very painful disease – accept that you may need help with care.
- Get help. Directly ask others for support and use services such as support groups and psychotherapy.
