Caring for the Caregiver

For people who have never had a family member need care for a chronic illness, it may be surprising how much of that care is provided by people who are not healthcare professionals. Indeed, while physicians, nurses, therapists and others in the field take care of these patients when they’re in a hospital or visiting their doctor’s office for a checkup, most of their non-clinical care is provided by a family member or close friend who makes sure the patient is taking medications on time and helping them bathe and go to the bathroom.

We refer to these amazing people as “caregivers.” These are the people who make sure the patient is taken care of at home, so that, while they, he or she is receiving ongoing treatment, they can continue living in the comfort of the family home. Caregivers are vitally important because they often check the mail every day, pay bills for the patient, keep the house clean and care for pets, in addition to simply spending time with the patient.

Being a caregiver is a difficult and time-consuming job that is performed for love, not pay. As our population ages, it’s a role that’s becoming increasingly more common. A 2015 study from the National Alliance for Caregiving and the AARP showed that there were approximately 43.5 million caregivers in the U.S., whose combined efforts were estimated to have a value of $470 billion dollars, almost as much as Walmart’s total sales for the same year.

Sometimes also referred to as an “informal caregiver,” this role can be highly stressful. First, the patient’s needs never take a day off. In fact, caregivers on average spend more than 24 hours per week providing care, with about a fourth dedicating more than 41 hours per week. Also, caregivers often feel pressure because the patient’s health – and sometimes, their survival – may be at stake.

These stress levels are more than just a hardship. They’re dangerous. Research has shown that chronic stress can potentially shorten life expectancy. So it’s an issue that must be given attention.

Fortunately, there are several steps a caregiver can take to reduce the stress to more manageable levels.

First, be at peace with the fact that you can’t do this alone. Furthermore, if you try, there’s a good chance you’ll eventually get burned out and won’t be able to provide the necessary care. It simply takes too much time and there are too many tasks involved that one person can’t do it all.

Sometimes, caregivers don’t want to ask for help because they feel like it means they failed, or that they weren’t capable or strong enough. Or, they’ll say, “This is my Mom, or my Dad, and I can’t trust them to anybody but me.” That’s why it’s important to tell your doctors and nurses, your medical care team, if you’re struggling. They can listen to you and give you good advice on how to get help.

The Caregiving Team

One of the best ways to lighten the load is to assemble a caregiving team and give each team member separate responsibilities. To be clear, this is not the same as the “care team,” which is the team of healthcare professionals, such as doctors and nurses, that is providing medical care. A caregiving team, on the other hand, could include these four roles:

• Administrator. Responsible for tasks that require attention to detail, like scheduling doctor’s appointments, or dealing with insurance and disability issues.
• Spokesperson. Naturally, friends and relatives of the patient will want updates. This person is responsible for answering phone calls and emails, sending thank-you notes and arranging visitors.
• Worker Bee. As the name implies, this is the person in charge of everyday tasks like cleaning, cooking, running errands, walking the dog and other chores.
• Counselor. This person is there to give the primary caregiver someone to talk to whenever they need to confide in someone or blow off steam.

Certainly, you might be the team leader and take on more of the responsibility than everyone else, but your teammates can give you a little time to yourself and keep you from becoming overwhelmed by stress.