3 things to know about a caregiver’s experience with chronic disease

8.29.18

As the number of Americans battling chronic disease increases and people age, it is no surprise that more families will begin to rely on caregivers. By 2020, AARP estimates that nearly 117 million Americans will need assistance. The increased need for caregivers is also affecting employers, who are losing an estimated $33 billion per year as a result of employees taking time to care for family members or loved ones, according to an article in Forbes.

While we commonly recognize trends associated with caregiving, we often neglect to talk about the effect this role has on the life of the caregiver. After connecting with numerous caregivers, along with patients they care for, and hearing about their experiences, here are three things we learned:

1. It is essential to have a support system in place.

There are many hurdles and trials that caregivers face, particularly when it comes to ensuring that the person they are caring for can access the appropriate health care. Oftentimes, the best resource can be another caregiver, because they may have experienced the same issues and – in the best cases – found an innovative solution. Caregiver support groups can be a great way to receive answers to your tricky questions and connect with people who understand what you are going through.

If you are looking for answers or encouragement, try searching for a support group near you, or look for online groups that may meet your needs.

2. It is common to feel emotions like guilt or even resentment, but we can learn how to express and handle these appropriately.

Guilt frequently stems from feelings that you are not doing enough or doing a good job. This is a common emotion that can be properly managed by recognizing and setting realistic standards and goals that can be achieved each day.

As a caregiver, you may become overwhelmed with the amount of responsibility you have or upset with the changes it brings to your work, social life and family. It can often cause you to look around at others who you may feel aren’t doing enough to help out and can lead to resentment. When this happens, it is important to find a healthy way to release that emotion, whether it’s through conversation or writing.

3. Find time for yourself.

Caregiving may require you to significantly change your routine, your habits and even cause you to put your career on hold. Many caregivers have expressed that they “don’t feel like themselves anymore,” or that a patient’s “disease has begun to define their life”.

Dayna Steele was the primary caregiver for her mother, who battled Alzheimer’s disease and echoes the above sentiments. When her mother passed, she had this to say in an article: “Being her caregiver had become a large part of my identity, and I needed some time to figure out who I was now without that role to fill.”

Each day make sure that you designate time for yourself to decompress, enjoy a meal with friends or engage in a hobby that you are passionate about.

From helping with meal preparation to attending doctor’s visits and dispensing medication, caregivers play an important role in many chronic disease patients’ lives. Join the Chronic Disease Coalition and help support our efforts to make sure caregivers’ voices are heard.