The Caregiver Experience: How Two Caregivers Adjusted to Their New Roles

Author: Kris Admire, Certified Case Manager

When your loved one is diagnosed with a serious health condition and you take on the role of caregiver, it can be overwhelming. Processing the diagnosis and sifting through an unlimited supply of information is exhausting. Hy-Vee Pharmacy Solutions (HPS) makes life easier, healthier and happier for our patients and their caregivers. As a certified case manager, I help patients and their loved ones avoid information overload, connecting them to reliable professional resources.

Throughout my years of healthcare experience, I’ve seen the amazing impact caregivers have on patient care. Whether you’re a new caregiver or you’ve been a caregiver for years, you can benefit from the experiences of two caregivers who adjusted well to their caregiver roles.

Building a Caregiver Support Network

When Katie’s* elderly father was diagnosed with terminal cancer, she willingly accepted the role of caregiver. As a busy mother and elementary school principal, Katie was used to responsibility. However, the added responsibility of a caregiver proved to have unique challenges. It took time for Katie to sort through her questions, her feelings and her new role as both a daughter and a primary caregiver. Throughout this transition, Katie built a strong support network. Her friends, family and local support groups provided guidance and encouragement when Katie had to make difficult decisions related to her father’s care. 

Building a strong network of support makes managing chronic, complex conditions easier for patients, but it’s also important for caregivers. Caregivers have their own unique challenges and needs. Your family and friends can share in the highs and lows of helping someone manage a serious illness. Surround yourself with a supportive team to help you stay connected throughout your caregiver journey.

Connecting with Others

In addition to helping Katie manage her father’s care, her support group also provided much needed socialization. It’s important for caregivers to spend quality time with family and friends. Normal interactions and everyday activities can provide relief from the stress of caring for someone who is chronically ill. Take time to do what you love with the people you love. Whether you’re attending a concert, going out to dinner or getting away for the weekend, staying connected to the people you care about is beneficial.

Asking for and Accepting Help as a Caregiver

When Jenna’s husband was diagnosed with multiple myeloma, she took charge as his primary caregiver. Initially, Jenna had several questions for our pharmacists about her husband’s medication. Once her husband began treatment, Jenna shifted her focus to other aspects of his care. One of Jenna’s main concerns was how to coordinate transportation between their rural community and the cancer center.

As Jenna became more confident in her role as a caregiver, transportation became less of an issue. Jenna and her husband learned to manage his treatment and became comfortable asking for and accepting help. As their case manager, I connected Jenna with local and regional resources that could meet their transportation needs. In one conversation, Jenna shared that in spite of the tremendous challenges, her role as her husband’s caregiver strengthened their love and relationship.

One of the reasons Jenna is such an exceptional caregiver is that she recognized when to ask for help. Caregivers, give yourself permission to ask for help and be comfortable accepting help from others. Whether you need help taking care of your loved one or taking care of yourself, it’s important to let other people support you as a caregiver. Accepting help makes your life easier and can prevent caregiver burn out.

If you don’t know how to ask for help, start by making a list. Write down what you need help with and keep track of simple, everyday tasks that you don’t have time to finish. Your list could include walking the dog, going to the grocery store and providing transportation to doctor’s appointments, school or work. Having a list of areas where you need help can be a useful tool to organize your helpers and recruit new ones.

Journaling for Caregivers

Journaling was an extremely helpful tool for Jenna as she helped her husband manage multiple myeloma. She kept detailed accounts of each appointment, wrote down all her questions and tracked her husband’s progress in between appointments. Journaling helped Jenna feel confident and prepared when she and her husband spoke with doctors, pharmacists and other members of their support team.

Many caregivers find journaling is a helpful tool. Like Jenna, caregivers use journals to keep track of medications, doctor’s appointments, symptoms and other health-related information. Journals can also be a safe place for caregivers to write down what they’re thinking and feeling. Try writing down your thoughts to clear your head and help you process everything that comes with taking care of someone who is sick.

Caregiver Resources

When I was working with Katie as her case manager, I sent her information from the National Cancer Institute called When Someone You Love has Advanced Cancer. Katie would consistently reference this guide during our conversations. It became one of her most valuable references as her father’s cancer progressed. The National Cancer Institute and other organizations provide numerous resources for patients and caregivers at every stage of their treatment journey. Additional resources recommend for caregivers include CaringBride, Financial Steps for Caregivers, Family Caregiver Alliance and National Alliance for Caregiving.

Caregiver Support Through Hy-Vee Pharmacy Solutions

Hy-Vee Pharmacy Solutions (HPS) offers comprehensive support to patients and caregivers living with chronic, complex conditions. In addition to clinical excellence, HPS provides exceptional caregiver support through our Whole Health wellness program. Caregivers can access personalized nutrition support from a registered dietitian to help them plan meals. They can also talk to a registered nurse for help with self-injections, medication side effects and other clinical questions. As a certified case manager for HPS, I have the pleasure of connecting caregivers to trustworthy local and national resources and support groups. With HPS as your specialty and infusion pharmacy provider, life is easier, healthier and happier for caregivers.

*Names have been changed to protect the privacy of our patients and caregivers.