What to Know About Being a Family Caregiver

There are two broad situations where someone might become a family caregiver. In the first scenario, you could find yourself being a caregiver because of a sudden situation. For example, a medical diagnosis or accident can put you in a caregiver role. 

The other situation occurs more gradually. You might have an elderly parent, for example, and over time you’re helping them more and more. 

Eventually, you realize you’re committed to caring for another person. 

There are ways you can get paid for being a family caregiver, which is important. If you find yourself in a full-time position, you may not be able to work at your job. For example, the Consumer Directed Personal Assistance Program or CDPAP agency is a program under Medicaid in New York state that lets beneficiaries choose a personal caregiver, including family members. 

Under programs like CDPAP, which have different names depending on the state you’re in, a chosen caregiver is paid for their role. 

Beyond getting paid, the following are some of the other things you should know about being a caregiver, what it entails, and what you need to consider before you commit

What is the Role of a Caregiver?

A caregiver can be a family member or friend of someone. Whatever the relationship you have with the person who needs care, you can still identify yourself as a caregiver because that’s exactly what you are. If you don’t identify yourself as such, you’re not going to be able to connect with resources that can help you. 

Caregivers often have many roles at the same time. 

You could be employed part- or full-time. 

You might be raising children, have a spouse, and have a myriad of other family and personal commitments. 

When you add something as major as a caregiver to that list, it can quickly become exhausting. You’re going to find yourself navigating social service systems, talking to medical care providers, and being an advocate for the person you care for. 

These are all things you’re doing in addition to helping them manage their daily needs, and you’re also taking care of yourself and potentially your own immediate family. 

Some of the many tasks that you might do as a caregiver include:

  • Helping with personal care. Personal care can include toileting, grooming, bathing, and dressing. 
  • Food preparation and all that comes with it, such as shopping for the items needed to make meals. 
  • Housekeeping, laundry, and errands. 
  • General health care, such as overseeing the use of prescription medications, administering medicines, and helping manage medical appointments. 
  • Mobility assistance can mean helping someone get in and out of their wheelchair, shower, or car. 
  • Personal supervision and companionship. 
  • Transportation means taking the person to appointments, errands, and activities. 
  • Providing emotional support. 
  • Home organization. 
  • Handling finances and legal issues. 
  • Health monitoring. 

The Pros and Cons of Being a Family Caregiver

As with anything in life, there are going to be both pros and cons when you’re in the role of caregiver for a family member. 

The biggest upside is that you’re performing an act of love. When you’re caring for someone else, particularly if they’re you’re parent, it can be very meaningful for you. You might feel like it’s your opportunity to pay back everything your parent has done for you over the years. 

Almost 8 in 10 surveyed caregivers say the experience strengthened their relationship with their family members. 

There are, unfortunately, also downsides, and you have to weigh these carefully as you decide what’s right for you in your life. 

First, when you take on this role, it creates a change in your lifestyle. Sometimes those changes can be very significant. Your life might not look anything like it once did. 

There are also likely to be physical and mental effects on your own health. 

For example, 53% of caregivers experience depression, and caregivers who also work outside the home have a significantly higher chance of getting a chronic disease themselves. 

There are often strains on relationships, including with your siblings, your spouse, and your own children. 

You have to be cognizant of all of these impacts and make sure that you’re ready for them. 

Other negative effects can include financial stress and burnout. 

How Can You Adjust to the Role of Caregiver?

When you’re stepping into the role of caregiver, along with being honest with yourself about what it will entail, there are other things you can do to begin to adjust. 

  • Learn everything you can about the diagnosis or disease your loved one has. The more you can learn, the more confidence you’re going to feel in taking on a new role and also coordinating care. Some people are afraid to learn what they might expect, but knowing what to anticipate is a good way to empower you. Education and information are the best things you can arm yourself with as a caregiver. 
  • Get organized. The more organized you can be, the less likely you are to feel overwhelmed. Get a binder or folder where you can keep all of your loved one’s important information. You can keep up with their prescriptions, contact information for care providers, and any relevant medical information. You might also want to create a health journal, where you detail your loved one’s care and symptoms you might notice or new things that are happening. 
  • Put aside any unresolved feelings of frustration or hurt. You might start to feel old things resurfacing in a new role, and if so, work through it with a therapist or mental health provider. 
  • As much as you can, talk to your loved one about what they want your role to be and what both of your boundaries are in the new relationship you’re creating. Things might change over time as they have to, of course. 

Prepare for medical appointments as well. Above, we talked about the importance of understanding the health needs of your loved one. When you’re speaking to their health care providers, remember to specifically talk about the following:

  • Learn about the skills and knowledge you’re going to need to care for the person. You might need training for dealing with complex medical schedules or administering certain medical procedures. 
  • Talk to health care providers about how the disease might progress. 
  • Learn about the needs of your loved one now and also what those could look like in the future. 
  • You can talk to care providers about the cognitive changes that might happen, as well as physical limitations currently, and potential future limitations. 

Taking Care of Yourself

One of the most important things you need to prioritize when you’re in a caregiver role is self-care. If you neglect taking care of yourself, you’re going to suffer mentally and physically. You’ll feel more stressed and frustrated, and you’re at a greater risk of also experiencing burnout. 

When you don’t take care of yourself and prioritize your needs, there’s going to be no way for you to then provide the best possible care for your family member. 

Self-care can look different for all of us, and you need to find what works for you. 

Just like you schedule other commitments in your life, schedule time for self-care. When you include things in your schedule, you’re more likely to prioritize those things and ensure that you follow through. 

You might decide to go to a fitness or yoga class every week, take time out for social events with friends, or you could treat yourself to a massage or facial every once and a while. 

Too often, caregivers feel guilt when they’re taking time for themselves, and that’s the last thing you want to feel. You should never feel guilty for caring for your own needs. 

Self-care can reduce your risk of developing symptoms of mental health disorders like depression that can often affect caregivers. 

Social Support

Finally, being a caregiver can feel extremely isolating. Remember this and find ways to combat the effects of loneliness for yourself. 

You can do this by spending time with people you care about, but there are other options as well. 

A lot of caregivers find joining a support group helpful for them. When you participate in a support group, you’re with other people who are experiencing things similar to your own experiences. You can share what you’re going through and how you’re feeling without worrying about judgment. You’ll also benefit from knowing that other people are experiencing similar things. 

Whether or not you join a support group, it can also be a good idea to talk to a therapist if you’re a caregiver. Not everyone feels comfortable sharing what they’re feeling with their family or friends, but a therapist or counselor is a non-biased third party who you can be open and honest with. 

The more prepared you are for the ups and downs of caregiving, the more in control you’ll feel of the situation, and the more you can thrive even when you face challenges. Don’t try to avoid the challenges—prepare yourself to deal with them head-on. 

Featured Photo by Andrea Piacquadio