There are times in life, like a health crisis, when a loved one needs you to be their eyes, ears and voice. Though you may be feeling anguish over his or her illness, a patient’s pain, fear or even the effects of medication can keep them from being their own advocate.
But, you can play a role not only in supporting them through a stressful time, but also in making sure they’re getting the best care.
Gathering information is key. Ask questions and do research about their medical condition, treatments, specialists in the field and even the best hospital or surgery center for having a procedure done. Get to know the doctors involved and ask for specifics if you don’t understand any terms they use. Don’t hesitate to bring another family member with you, especially when surgery or other complex procedures are being discussed.
Keep careful notes. Even a minor illness can involve many tests, new medications and detailed home care. It’s hard to remember a lot of information, such as the dosing of multiple drugs and complex hospital discharge notes, especially when you’re stressed. Use a small notebook or the notes app on a smartphone to write down the names and contact numbers for everyone on the medical team. Include dates on your notes — you may need them to provide a timeline to future specialists or to reconcile medical bills later on.
Monitor their care. Even though your loved one’s primary doctor or surgeon may be the point person for other healthcare team members, you can be the backstop. Know and share your loved one’s medical history, any daily medications, allergies and known drug side effects. If a new medication is prescribed, ask what it’s for, possible side effects and whether it could have a negative interaction with any other drugs. Being an active member in care lessens the chance of medical errors.
Be present. If your loved one is in the hospital, your daily visit may be the one thing he or she looks forward to each day. Bring everyday items from home, like a robe or toiletries, to make the patient more comfortable.
Have a second-in-command. Being an advocate is like having another job. There may be times when you can’t be there. Designate a close friend or relative who can step in for you.
Take care of yourself. A spouse’s or child’s serious illness can take an emotional toll and you can’t advocate for them if you’re rundown. Eat a healthy diet and get enough sleep.
The Visiting Nurse Service of New York has a library of articles covering the most important aspects of caregiving.