What to Know About Being a Family Caregiver

By  //  May 12, 2022

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A large percentage of the American population is already in or is close to their senior years. As people age, their needs change, but the preference among the overwhelming majority of people is to age in place or remain as independent as they can. 

This means that family caregivers are stepping in to provide assistance to loved ones to help avoid having them go to assisted living or nursing homes. 

From programs like FreedomCare in New York State that will pay family caregivers to support groups, there are a lot of resources if you’re in a caregiver position. The following is a guide to what you should know, not just about the role of a family caregiver but also about how you can take care of yourself in the process. 

Understanding the Role of a Caregiver

Sometimes, caregiving becomes a role you don’t even consciously take on. You might start by helping your parents with errands or taking them to doctor’s appointments. Then you can find yourself filling their prescriptions and doing their grocery shopping. Eventually, as you take on more roles, you realize that you are a caretaker. 

There are other times when it’s not gradual. The need to become a family caregiver can stem from a sudden event, like a heart attack or accident. 

In these situations, you take on an entirely new role in your life. 

In addition to caring for another person, you might also have children and be employed full or part-time. You could have a spouse and other family commitments, and at the same time, you’re trying to juggle nearly every aspect of someone else’s life. 

Some of the tasks you could find yourself doing include:

 Grocery shopping, cooking, cleaning, and laundry

Providing transportation

Helping with daily living tasks like getting dressed or bathing

Transferring someone out of a chair or bed

Performing medical interventions like breathing treatments

Arranging and facilitating medical appointments

Medication monitoring

Working with care providers and case managers

Handling financial and legal issues

Being a companion

If you find that you’re in the role of being a caregiver, there are some initial steps to take, including:

Understand as much as you can about the health condition or conditions of your loved one

Learn more about the specific skills you’re going to need based on the diagnosis

Go over healthcare and financial wishes with your loved one if possible

Complete any necessary legal paperwork, which can include Advance Directives and Powers of Attorney

Get the rest of your family together to discuss the current care and the future plan—you can also talk about how you’ll keep everyone involved and in the loop,

Start to identify personal and community resources

Find your own support system

Financial Support

There are a lot of strains on someone who is a caregiver, and one of the biggest is the financial challenges it can create. A study from AARP recently found that caregivers spend, on average, $7,000 out of their pockets annually. 

Along with the costs themselves, in some situations, a caregiver isn’t able to work in a job because of the demands placed on them. 

There are some programs that can be helpful. 

For example, Medicaid programs in some states will let family members who qualify become paid caregivers. 

The program that might compensate you as a family caregiver is called Medicaid Self-Directed Services. The beneficiary of this program is someone over 60 who needs at-home help and can direct their own caregiving process. 

Every state, as well as Washington D.C., has a self-directed option, and in some states, the beneficiary can hire a family member to provide their needed care. 

If someone needs a live-in caregiver or similar level of support, there are other state-based Medicaid options. In Massachusetts, for example, there’s the Adult Foster Care program. This provides payment for a live-in caregiver who can be a family member. The person who receives the care must have MassHealth, which is the name of Medicaid in Massachusetts, and a condition that prevents the completion of daily tasks. 

Another option is the National Family Caregiver Support Program. It doesn’t directly compensate family members who are caregivers, but the program will cover the costs of outside caregivers who provide occasional care when a caregiver needs a break. This is known as respite care. 

Some people are eligible for aid from the Veterans Affairs. There is a Veteran Directed Care Program that’s available, which helps veterans direct and manage their own care. This can include paying an in-home caregiver. 

Aid and Attendance is another VA benefit that can be used for the costs of in-home care, nursing home care, and assisted living. 

In some cases, families come together and decide to pay the family caregiver for their time. You could talk to them about making the same amount of money as a home health aide in your area. You should create a legal contract that will outline your duties and your payment schedule. 

The Mental and Physical Effects

It’s important that as a family caregiver, you understand how this role has the potential to affect your own mental and physical health. 

For example, caregiver stress can stem from both the physical and emotional strains that occur. Those people who are in a caregiver role report much higher stress levels. You may feel like you’re on-call all the time, with little opportunity for anything else. You could feel overwhelmed by the amount of care your loved one needs, and then that can, in turn, make you feel guilty. 

Symptoms can include feeling alone or isolated, sleeping too much or too little, and changes in weight. Feeling overwhelmed, tired most of the time, becoming angry or irritated easily or loss of interest in activities are other signs that you may be experiencing problematic stress related to being a caregiver. 

Long-term unchecked stress can weaken your immune system and put you at risk for depression and anxiety. Stress causes weight gain, and this is especially likely in women compared to men. When you’re obese, it raises your risk of a range of health problems, including stroke, diabetes, and heart disease. High-stress levels can raise your risk of arthritis and cancer. 

You may find that you start having problems with your own short-term memory and sense of concentration because of your stress. 

So what can you do?

To be proactive and protect yourself from the detrimental effects of stress, you can:

Educate yourself on the best ways to help your loved one. There are often classes that are geared toward helping people with specific illnesses or injuries. The more you can learn, the more capable and empowered you’ll feel. 

Find community resources. Most communities have adult daycare and respite services so you can take a break from your duties when you need to. 

Ask for help. Be specific in what you need. 

Consider joining a support group. Support groups can be incredibly powerful as a coping mechanism for stress because you can share your own struggles and frustrations but also realize you aren’t alone in what you’re going through. 

Take care of your physical health. 

Make sure that you’re getting time every week to stay connected with the people and things you enjoy. 

Self-Care for Caregivers

We talked briefly above about how important it is to take care of yourself mentally and physically. You should schedule self-care where you look after your own needs, just like you schedule anything else that needs to be done. 

First, learn how to be compassionate with yourself. You are doing something incredibly difficult, and you shouldn’t be overly critical of yourself. Being kind to yourself is what’s going to allow you to practice self-care in other ways. 

There are a lot of simple, free things you can do in your daily life that will allow you to be compassionate to yourself, stay present and mindful, and reduce your stress. 

For example, take 10 minutes out every day to practice breath awareness. Deep breathing exercises are a wonderful way to relax mentally, and they can also help you release tense physical energy. 

You might also consider taking a class like yoga at least once a week. During this time, you can step away from your duties, you can take care of your physical health, and can work on breathing and poses that reduce mental stress. Even if you don’t take a class, you can do videos or use an app. 

Finally, stay socially connected. Being a caregiver is incredibly isolating. You may feel like it’s you against the world, but staying connected with friends, family, or people who are in a similar situation to your own is self-care in and of itself. You need to nurture strong social connections so that you reduce your sense of isolation and burnout. 

The number of family caregivers is only set to go up in the coming years, making it critical that we learn on a societal level how to meet the needs of these people and the challenges they experience in these roles.