The Caregiver’s Journey

Take your turn in our first-ever caregiving game, and learn everything you need for each step of the way

Your child has a disabling accident. Your spouse falls ill with terminal cancer. Your aging parents need help with daily living. These are just a few reasons why you may abruptly find yourself in a caregiver role — facing what can seem like an overwhelming and confusing path ahead. 

To-dos, unfamiliar terminology, doctors visits, financial pitfalls, and other obstacles often fill this path. That’s why we’ve developed a guide to help you on your journey. 

Step One

Learn about what’s going on 

Start with a clear understanding of your loved one’s medical condition and care team, says Julie Fohrman, a gerontologist who founded North Shore Geriatric Care Management in Lake Forest. Talk to their healthcare providers, research conditions, and seek support groups. Get a realistic picture of “what to expect on a day-to-day basis — what this will mean for me as caregiver,” says Colleen Morley, associate chief clinical operations officer for continuum of care at University of Illinois Health System. Deciphering where things stand will help you plan your next steps.

Step two

Get powers of attorney

Managing your loved one’s affairs will be easier if you have power of attorney (POA). There are two main types: medical and financial. Download the forms for free online. Sign each in front of two witnesses (plus a notary for the financial POA). The healthcare POA allows you to access medical records, set appointments, and deal with insurance companies. The financial POA provides access to banking and other financial services.

Step three

Set up advanced directives

“There’s nothing messier than getting towards the end of life, or another catastrophic event happens, and they can’t speak for themselves,” Morley says. She and Fohrman recommend the Illinois POLST (Practitioner Orders for Life-Sustaining Treatment) form. Once signed, this form outlines the person’s end-of-life choices for family and the medical team. (Download the POLST at polstil.org)

Step Four

Examine insurance and finances

“Make sure you are tapping into every benefit plan that your loved one has,” Morley says. This includes health insurance, long-term care policies, veterans’ benefits, and disability insurance. Employers — yours or your loved one’s — may offer caregiver support, such as access to social workers. Check bank accounts, investments, and expenses; automate bill payments to avoid late fees. Separate out financial information for easier access, and share a spreadsheet with relevant information with other family members. 

Step five

Track medical records

Organize medical information — research, providers, notes, medication lists, test results — in a binder. While you may want a digital copy, don’t bother bringing a thumb drive to the doctor’s office, Morley says — they won’t plug it into their computers out of virus fears. Instead, use bring your binder to appointments, and use it as a home reference. Use online portals for messaging doctors, making appointments, and verifying medications and instructions.

Step six

Arrange help

You may need services — people to lift and transport your loved one, perform minor medical procedures, or install assistive equipment, for example. Find local resources via your hospital or doctor’s office, Agency on Aging office, insurance company (request a case manager), or through private in-home care services. Ask friends and family for help making meals, visiting, or shopping. Communicate responsibilities via sites like Caringbridge.org and LotsaHelpingHands.com. “Delegate,” Morley says. 

“You can’t do it all by yourself.”

Step seven

Care for yourself 

Caring for others can be grueling over time. Experts urge self-care; it helps you be a better caregiver. “Create a balance where you’re also taking care of yourself. Your healthcare needs are really important,” Fohrman says. Eat well, sleep well, exercise, and don’t neglect your own medical care. And relax — read, take a walk, or watch a favorite TV show. If needed, consider respite care — services that will care for your loved one in a facility for several days or weeks. (Find sites at archrespite.org.)

Step eight

Enjoy your loved one

Amid your caregiving duties, remember to spend quality moments with your loved one. “Share stories and reminiscences,” Forhman says. “Learn about things you never knew: family stories and words of wisdom.” Hallmark moments don’t always materialize, but often, caregivers strengthen their bond with their family member, she says. They appreciate this precious time with the person, supporting them when they most needed it. 

Originally published in the Summer/Fall 2023 print issue.