Advice for New Caregivers

Growing up, children rely on parents, guardians, grandparents, and even older siblings as a source of physical and emotional support. As aging parents and guardians become susceptible to illness, disease, and chronic conditions, the responsibility shifts to their children to step into the role of caregiver.

This leaves new caregivers in a challenging predicament, navigating how to manage the shift in responsibilities, while keeping the relationship intact.

This change forces all parties out of their comfort zones, but it can bring a family together and make you stronger than ever. To ease the transition, reference this list of common challenges, and advice on how to handle them from people with firsthand experience.

The challenge: The shattering reality that our idols are not invincible. People idolize their caregivers when growing up, often thinking of them as unbreakable pillars of strength. It is painful to have the illusion of invincibility destroyed.

The advice: Remember that they are just human. Illness can happen to anyone, but it doesn’t change the inner strength and personality of the person it affects. Think about why you admire and look up to your loved one. Their witty sense of humor, their caring nature, their listening skills, their sage advice… whatever the reasons are, they probably don’t include their level of health. Don’t lose sight of inner qualities that you admire.

Stepping into each other's shoes and keeping communication open will help you both adjust to this change in roles.

The challenge: They are resisting your help, or feeling embarrassed they need you.

The advice: Think back to a time when you were struggling, and they supported you. Remind them of that time! Did they think you were incompetent, weak and helpless while helping you? Or did it make them happy to know they were helping out a person they loved. Stepping into each other's shoes and keeping communication open will help you both adjust to this change in roles.

Don't go at it alone. Work together, building a strong support network.

The challenge: They used to be who you would go to for support. Now that they are sick and you are taking care of them, you need to find a new outlet for emotional support.

The advice: Don't go at it alone. Work together with others around you, building a strong support network. Turn to other people in your life. Talk to a friend, they may be able to relate. Even if they can’t relate they can provide positive distractions and stress relief. Talk to other family members. They are likely as worried as you, and will be able to understand what you are going through. 

If no one around you understands, seek online support. You are likely tasked with making decisions about a specific healthcare problem. Maybe no one else in your network has experience with this problem, but millions of other people in the world certainly do. Check facebook, twitter, or local hospitals to find a caregiver support groups. For folks based in the Greater Boston Area, check out the Caregivers of Metrowest.

Maybe no one else in your network has experience with caregiving, but millions of other people in the world certainly do.

The challenge: They are afraid -- and so are you.

The advice: Address their fears honestly. It’s natural to be hesitant when beginning a new medical treatment. The best way to help your loved one overcome these fears is to address them all. Make sure to talk with them about what they expect, and what is making you both worry. Many times you will both feel better after talking it through, and doing research together to answer any unknowns. If you’re still unsure after doing your own research, take your concerns to the doctor or study coordinator to get answers and gain confidence.

If you’re still unsure after doing your own research, take your concerns to the doctor or study coordinator to get answers and gain confidence.

The challenge: Keeping up with appointments, doctor’s orders, and symptoms is overwhelming.

The advice: Write everything down. Help your loved one to write down questions concerns and symptoms before appointments. Anything that crosses your mind or comes up in conversation is fair game to address with a doctor or study coordinator. Writing down you thoughts in advance of appointments ensures you won’t forget anything, and gives you a list to check off throughout the visit.

During the appointment, you may want to join them for moral support, but you should also join in to take notes on the conversation and instructions given. Each detail is significant, and the reality is that much of what is discussed will flee your mind before you’ve even left the office! You will help your loved one get the most out of the appointment by allowing them to fully participate in conversation with the practitioners without worrying about notes, and you can feel confident you are caring for them properly when the appointment ends.

Writing down you thoughts in advance of appointments ensures you won’t forget anything, and gives you a list to check off throughout the visit.

The challenge: You think the doctor may be wrong.

The advice: They very well could be! 

Don’t settle. When you love someone, you never want anything in their life to be second best. This rule of thumb is no different when applied to their health care and treatment. Don’t make the assumption that the doctor is always right. Ask questions. Think for yourself. Don’t be afraid to ask for a second opinion, extra tests, anything that will make you feel certain that your loved one is receiving the best care possible.

Don’t make the assumption that the doctor is always right. Ask questions. Think for yourself.

The challenge: You’re feeling burnt out.

The advice: Take time for yourself. You can’t pour from an empty pot. Taking care of someone else can be extremely taxing. Take at least 1 hour a day to do something for yourself. Whether it's a long walk, a bubble bath, or glass of wine make sure you find time to unwind -- you deserve it!

Rachel.jpg
Rachel is a passionate women's health advocate and an endometriosis patient herself. A graduate from Northeastern University, she is plans to make a difference in healthcare.