New to caregiving? Get support from these key resources

If you’re a new caregiver, it can be easy to feel overwhelmed. You may feel as if you’re completely on your own — and this can be isolating. But you aren’t alone. There are many resources you can tap into as you navigate your caregiving role.

“Support can come from government agencies, national organizations, health care networks and even your own personal social network,” says Christina Irving, L.C.S.W., client services director for Family Caregiver Alliance, a nonprofit organization that provides information and support for caregivers.

Every caregiving situation is different, but caregivers often need certain help and resources to feel more supported.

When you first become a caregiver, you may not have ever done anything like it. To help you get started, there are organizations that offer caregivers both general and specific information. Check out the Family Caregiver Alliance, Caregiver Action Network, National Institute on Aging and Administration for Community Living. These agencies often provide ways to connect with other caregiver support groups as well.

“Those new to caregiving often have a whole set of skills they have to learn, such as managing medications, taking vital signs or helping the patient with bathing or toileting,” says Irving. “A lot of caregivers take on nursing tasks, maybe giving insulin injections, checking blood sugar levels or needing to learn how to operate durable medical equipment like oxygen. These are things that typically require a demonstration by a medical professional.”

There are plenty of additional outlets to help a new caregiver learn these tasks. These include:

• The local hospital. Many hospitals offer classes, support groups and training for caregivers. “If your loved one was in the hospital, ask the nursing staff if they can give you a tutorial on certain tasks you anticipate needing help with,” says Irving. You can also ask your doctor or a qualified health care provider — such as a nurse, nurse practitioner or physician assistant — to show you how to carry them out or see if in-home health care is available.
  
• Training videos. Some organizations offer instructional videos for caregivers on topics such as how to measure vital signs, attend to wounds and lift or transfer someone who has limited mobility. Check out the Family Caregiver Alliance, Caregiver Action Network and AARP's Home Alone Alliance.
• Disease-specific organizations. There are certain medical conditions that may require a more specific skill set of the caregiver. This might include finding a different way to communicate, understanding the effects of treatments or dealing with falls. The Alzheimer’s Association, American Cancer Society and Parkinson’s Foundation, for example, offer caregivers information on how to navigate these types of challenges.

If there’s a national or local organization focused on a particular disease or condition, you may be able to find it through a simple online search or talk with your primary care provider to see if they can point your toward local organizations or support groups.

One of the top things that often comes up for new caregivers is money. One big question is whether your loved one can pay for their long-term care, explains Pamela D. Wilson, a caregiving expert in Denver, Colorado, and author of The Caregiving Trap: Solutions for Life’s Unexpected Changes.

“From the start, caregivers need to know how things are going to be paid for,” Wilson says. “Just as you would come up with a financial plan for your own life, it’s important that there’s one for the [person you're caring for] too."

Finances are not always addressed until someone needs care. “Caregivers have either waited too long to discuss finances with their parent or assume Medicare will cover everything,” Wilson says.

Try to speak openly with your loved one about their finances, involving them as much as possible in the conversation. 

Medicare may help pay some costs for people ages 65 and older. These include hospital stays, doctor visits and some home health care. But Medicare doesn’t cover assisted living or long-term care, according to the National Institute on Aging.¹

If your loved one has a financial planner or accountant, they may feel more comfortable if you talk to that person about money. If they don’t and you need financial support, some financial planners work pro bono on these cases. You can look for one through organizations such as the Foundation for Financial Planning and Advisers Give Back.

You may also want to contact your state’s Medicaid office to see if your loved one is eligible for financial assistance, suggests Wilson. Your local department of aging is another important resource for financial assistance information. You can find the information for your state through the federal government’s Eldercare Locator.

Sick or disabled military veterans might be eligible for the VA Aid and Attendance or Housebound benefits program. This adds an additional stipend to the amount they already receive through their monthly Veterans Affairs pension.²

Caregivers are busy, often with their own families to feed and care for. If a loved one eats a special diet, the caregiver may not have time to cook or prepare every meal for them. Food and grocery costs can also add up.

If funds are limited, there are programs and organizations that can help with food-related expenses. These include:

• Government programs. There are programs for both people with a low income and those who are seniors, such as the federal government’s Supplemental Nutrition Assistance Program (SNAP). Other government food programs that assist seniors ages 60 and older include the Child and Adult Care Food Program, the Seniors Farmers Market Nutrition Program and the Commodity Supplemental Food Program.
• Meal delivery services. Meals on Wheels America provides seniors with nutritious food delivered to their door. Easterseals is another national organization that offers home-delivered meals — as well as transportation and housekeeping assistance — for adults and seniors with significant physical or cognitive issues.
• Food banks. You can find local food banks at Feeding America, which has a nationwide network of food banks. If you attend a local church, synagogue or other faith-based place of worship, check in with them too. Some have meal programs or food pantries.

Caregivers often have more on their plate than taking care of a loved one. Many also are juggling work and family responsibilities. This can be exhausting, and caregivers may feel like they have no time for themselves.

It’s important for caregivers to find ways to replenish their energy. Whether it’s for a few hours or an entire day, there are ways for caregivers to get a reprieve without leaving a loved one unattended. Talk to them about the options and involve them in the decision-making, if they are up for it. You can look into:

• Adult day care centers. These facilities offer a variety of recreational, therapeutic and brain-stimulating activities. Some focus more on socializing. Others cater to people who require more intensive health services and are not able to be on their own.³ You can search for an adult day care center near you through the National Adult Day Services Association.
  
• Caregiver volunteers. The National Volunteer Caregiving Network can connect you with a local program to find a caregiver volunteer. Check your local agency on aging as well.
  
• Your social network. Ask other family members, friends or a trusted neighbor if they could stay with your loved one while you take a break. Respite care may also mean having someone run errands, help with household chores, make phone calls and be a sounding board when you need to talk.

As a caregiver, there are some very important realities you may have to deal with. Depending on the health of your loved one, you may be the one who has to make medical decisions. Even if they're healthy, it’s best to discuss things now, so that you’re prepared for the future. Topics may include end-of-life decisions, including burial, cremation or funeral plans, a do-not-resuscitate order and who should be the designated health care proxy.^{4, 5}

“These conversations may feel difficult, and families aren’t usually comfortable discussing these things, but these topics need to be addressed, especially if the person being cared for is still able to,” says Wilson. Also, the sooner you discuss a person's wishes and put a plan in place, the better it may be for everyone involved.

For matters concerning a living will and power of attorney, you’ll most likely want to contact your loved one’s attorney. If they don’t have one and hiring a lawyer isn’t affordable, you can reach out to these sources:

• Your state’s bar association. Call your local bar association and ask for a pro bono attorney to help you with elder care, probate or estate planning, says Wilson. Get the contact information for your state’s association through the American Bar Association’s online directory.
• American Bar Association’s Free Legal Answers. This is a no-cost, virtual legal advice clinic. Qualifying users can ask civil legal questions and receive answers back from pro bono attorneys licensed in their state. 
• LegalZoom. For a small fee, this service has estate planning legal documents you can download. For instance, a basic power of attorney document is $35. 

Becoming a caregiver can be stressful. That’s why it’s so important to start accessing resources right away, notes Irving. “Getting the support you need early on can make a big impact,” she says. “You don’t want to wait until you’re overwhelmed or burned out, which can make it harder.” With so many organizations and resources available, you can find the support you need — so both you and your loved one can feel cared for.