How to be your loved one’s best advocate

Key steps: Ask lots of questions and get smart about research

You just found out that your dad has Parkinson's or lung cancer. Now what? Just being there is a start, says Siobhan McMahon, PhD, associate professor in the University of Minnesota School of Nursing and a cooperative member of Adult and Gereontological Health. "It really helps to have a second set of ears and eyes during an appointment for any type of new health condition, or even a chronic one," she says.

Speak up with questions

No matter the diagnosis, one of the most important things you can do is to ask lots of questions. "Sometimes a provider might use lingo or jargon that are unfamiliar. Feel comfortable saying, 'Please tell me more,' or 'Where can I go to learn more?'" says Butler, who also serves as chair of the Social Workers Section at the American Geriatrics Society. "From the [provider] side, we want to know if you don't understand something or need clarification."

Get a point person for follow-up questions

Butler says that it's fairly common to feel overwhelmed during an appointment. Questions often crop up after patients and caregivers get home. Before you leave, ask who the best point person is for follow-up questions. The doctor might want you to contact them directly. Or they might refer you to a social worker or clinical educator.

Ask about web resources

Meanwhile, it's totally normal to hop on your computer and start Googling for more info. But know that not every site out there is equally reputable. That's why it's wise to ask the doctor or another member of the healthcare team for specific suggestions. Which sites or organizations do they trust?

They will likely point you to websites run by major medical institutions or well-respected non-profits, such as the American Cancer Society or the Alzheimer's Association, depending on the condition your loved one is facing.

Key steps: Ask about side effects and interactions

Whether your dad is switching to a different blood pressure medication or is starting on a drug for a condition he just recently developed, running to the pharmacy to get the pills is only part of your job. While you're there, ask the pharmacist to confirm how and when to take the medication. (With food? First thing in the morning?) You should also be sure to ask about possible side effects.

"As we age, some medications can have more pronounced side effects or adverse effects, so some caution is warranted," says McMahon. If you or your loved one hasn't already discussed these issues with the doctor who prescribed it, it's worth spending a few minutes chatting with the pharmacist.

Be sure to ask about side effects that could be especially problematic in seniors, such as dizziness and weakness (which ups the risk of falling) or memory impairment.

The pharmacist can also confirm that the new medication doesn't interact with anything else your loved one is taking (including prescription drugs, OTC meds, and dietary supplements). 

Key steps: Consider all the options in light of your loved one's preferences

Medicine is both an art and a science. Rarely is there only one reasonable path forward. When a doctor suggests a new treatment — especially if it's something complex, risky or potentially life-altering — make sure you understand why the provider thinks it's a wise choice. 

Good questions to ask:

• What are the alternatives?
• What are the risk and benefits of each option?
• What would happen if your loved one chose not to pursue any treatment at all?

Consider quality of life

It's especially important, says Butler, to weigh the impact a new treatment would have on your loved one's day-to-day existence and determine whether or not it's in line with their personal goals, whatever those are.

"Maybe your mother really likes to go to church or walk her dog," offers Butler as an example. "Will this impede her ability to go out and do that? You should also ask about whether a treatment will be painful or if she'll still be able to eat and have things taste good."

Ideally, your loved one will be able to express opinions during the decision-making process, or you'll have had discussions ahead of time so you'll know what their preferences are.

Be realistic about how the treatment affects you the caregiver

At the same time, ask what a new treatment might mean to you as the caregiver. "So often caregivers are being asked to do medical and nursing tasks, like changing a wound dressing or flushing a PICC line," says Butler. "It's okay to say, 'I don't know if I'm comfortable doing that.'" Training or community support resources might be available to help you, so don't be afraid to speak up.