Advice on health care navigation for caregivers
Navigating the health care maze can be daunting for both new and experienced caregivers alike. In caring for caregivers, Elizz offers some tips, advice, and words of encouragement for caregivers from other caregivers (and health care professionals). Include these ideas in your own caregiving toolbox.
1. Ask for Help
“I wish someone would have told me as soon as I became a caregiver to ask people and health care professionals for their knowledge and support – this means talking to your doctor, your nurse, your pharmacist and other caregivers and individuals that have gone or are going through similar experiences.” – Caregiver of five years for her mom
As a caregiver you will need a lot of information, skills, and knowledge to provide care, solve problems, and make decisions that you otherwise probably would not need or have. Don’t be afraid to ask for help, or ask for further information about a new diagnosis, or get the step-by-step procedure written down for a medical task you are required to do, or ask another caregiver if they can give you some advice.
2. Confide in Friends
"My caregiving ‘must have’ is a good friend. I have a friend who works in the health care system. She doesn’t have all the answers but she is a really great listener. It is very helpful to talk about certain stresses and get suggestions on how to deal with them. Being able to vent with someone you trust who is not a family member is quite helpful.” – Caregiver of two and a half years for her husband
Just like with anything in life, caregiving can come with challenges, difficult decisions, and problems that don’t have easy answers. Try to have someone to share what’s going on with, listen to your concerns, help you brainstorm solutions, give you encouragement, and make you laugh and see the positive side of things.
“I didn’t realize how much and how important communication is when caring for someone like my mom. My best advice is to develop a system that works for you to capture and track as much communication as you can. My mom has a lot of health care professionals coming and going from her home. I have a communication log that everyone including myself must write in. This keeps everyone in the loop and has avoided many disagreements and errors. Also, be very clear with instructions to health care professionals about the one you are caring for. I have a one page outline of her health history, surgeries, medications and treatments. I also have step by step instructions on what my mom likes when she is at home and at the hospital.” - Caregiver of three years for mom
See also, our Elizz article on Getting Organized – Health and Medical Information.
“As someone in the system, I want to give caregivers hope that there are tremendous resources, services and supports for caregivers and those they care for. Finding them and making strong connections with them can be a huge challenge though. Searching on the internet, making phone calls and waiting for responses can be one of the more time-consuming and challenging tasks for caregivers. This is something that can easily be delegated to someone willing to help out.” - Community social worker for 20 years
Many people are great researchers, can assert themselves well, and have the time and patience to sit on hold. Don’t underestimate the willingness of those around you to help out and the power of not having to manage it alone.
5. Have Patience
“As a cancer patient, caregiver, and a nurse I would have to say that patience is the most important skill needed to be a patient and caregiver within the health care system.” - Cancer patient for six months, caregiver of two years for dad, and nurse for 15 years
6. Be Proactive
“The biggest thing I wish I did when I started taking care of my dad was to get some of the more difficult conversations out of the way early on. I never asked about his bank accounts, life insurance, or where he wanted to die. Being proactive about some of these things would have avoided many hurdles, questions, and guilt. Talk to your bank, accountant, lawyer etc. about what you should be thinking about and start talking to your parents now.” – Caregiver of three years for parents
7. Look for Support
“The one thing I wish I had known before becoming a caregiver is that there is a lot of support/help out there from professionals and other caregivers. For five years I had no idea I had a title of ‘caregiver’ or that there was help available. You may have to take the lead on talking to health care providers about what you want and need, and clarify their expectations of you. Know that you are a ‘caregiver’ as soon as you are helping someone with a health or age-related issue a bit more than usual”. – Caregiver of seven years for her husband
8. Online Support
“I wish I could give caregivers the magic ingredient to make navigating the health care system easier but unfortunately I can’t. There are several great websites that can help individuals and caregiver find the information, services and supports they need.” – Information specialist, Ask Elizabeth Caregiver Support Line.
Like the caregivers above, you’ll probably find, or have already realized, that there isn’t a specific formula to caregiving. Figure out what works – and doesn’t work – for you and the person you’re taking care of, and you’ll find the right path that leads you through the health care maze.
See also, our Elizz article on Questions to Ask Health Care Providers.