Few people plan on being a spouse caregiver, but it’s far from an uncommon scenario. According to the U.S. Bureau of Labor and Statistics, in 2022 over 66% of caregivers were caring for a spouse or long-term partner. And the Family Caregiver Alliance found that spousal caregiving duties often take up over 21 hours per week — that’s a lot of time.
Fortunately, in some states, folks can get paid to be a spouse caregiver, which according to Pamela D. Wilson, a national certified guardian and certified senior advisor, is someone who provides care for their husband or wife.
Here, Wilson and other caregiving experts offer insight on what being a spouse caregiver entails, along with information on how to get paid (and where to find support) for this important role.
“…A spouse caregiver offers homemaker and personal care services or assistance with activities of daily living (ADLs) or instrumental activities of daily living (IADLs) for a spouse who qualifies and receives services through a state Medicaid program.”
—Pamela D. Wilson, certified guardian and senior advisor
What is a spouse caregiver?
There can be a few ways to interpret what it means to be a spouse caregiver. In a broad sense, Wilson notes, a spouse caregiver is a spouse who cares for a husband or a wife.
“In the context of a spousal Medicaid caregiver,” she continues, “a spouse caregiver offers homemaker and personal care services or assistance with activities of daily living (ADLs) or instrumental activities of daily living (IADLs) for a spouse who qualifies and receives services through a state Medicaid program.”
Some states provide funds for spouse caregivers via Medicaid. Medicare does not pay spouses to be caregivers. (More on this shortly.)
It’s also important to note that many unmarried folks with long-standing relationships “frequently refer to their life partner as a spouse, companion, etc.,” notes Christopher MacLellan, founder and CEO at The Whole Care Network. These folks, legally, may not have the same rights in certain caregiving scenarios, which is why it’s important to have life documents in place.
“No matter what your marital status is, it’s important to have life documents in place,” MacLellan notes. “This includes a health care proxy, durable power of attorney, living will, DNR, etc. By having these, folks are able to speak on their partner’s behalf when they’re not capable. It will also help alleviate quite a bit of stress when an emergency arises.”
How to become a spouse caregiver
To find out if your state offers a spousal caregiver program, Wilson recommends speaking with your/your spouse’s case manager first; they should be able to offer insight on becoming a spouse caregiver under an approved program. “If the case manager cannot assist — which would be rare — contact the main office of the state Medicaid program,” she says.
Programs, compensation and requirements will vary, depending on where you live. “For example, a training program through a state Medicaid agency certified for the spousal caregiver program may need to be completed,” explains Wilson.
Spousal caregivers may also need to:
- Complete a formal application.
- Undergo a background check.
- Provide documentation, such as a driver’s license or social security card.
- Complete a W2 tax form.
“Once training is complete, the spousal caregiver applies to be hired by the agency to provide paid care to their spouse,” Wilson says. The Medicaid agencies maintain care plans and other documentation specific to the approved Medicaid program.
“I have found that the best information, referrals and support usually come from one caregiver to another.”
—Christopher MacLellan, founder and CEO at The Whole Care Network
So, for example, after completing training, etc. a spouse caregiver would become an employee of the Medicaid agency approved for the spousal caregiver program. “Similar to regular employment,” Wilson explains, “the spouse caregiver has a job description for caring for a spouse and policies and procedures to follow.”
MacLallen adds that, while formal training is incredibly valuable, some of the best insight on caregiving comes from other caregivers.
“Caregiving often happens because of an unfortunate accident or an untimely diagnosis, and suddenly people — often spouses — are trusted in the role of a family caregiver with little knowledge or understanding of the medical, legal, or social systems they encounter while amid caregiving,” he says. “I have found that the best information, referrals and support usually come from one caregiver to another.”
Getting paid as a spouse caregiver
Programs and protocols can vary, but generally, when someone becomes a formal spouse caregiver, they need to document the time and type of services provided to a spouse. “Spouses are then paid on the regular payroll cycle of the Medicaid Agency with whom they are employed,” explains Wilson.
“Generally,” she continues, “a program that provides homemaker and personal care services allows a Medicaid recipient to choose their caregiver. One such program is Home and Community Based Services (HCBS). States may have different names for this program or offer other programs for paid spouse caregivers.”
What states pay spouse caregivers?
To find out the specifics of your state, ask your case worker or contact your Area Agency on Aging. You can also check out Givers, which is an organization dedicated to helping family caregivers get paid for their work. According to the American Council on Aging, the following states offer pay to spouse caregivers:
- Alabama.
- Arizona.
- California.
- Colorado.
- Delaware.
- Florida.
- Hawaii.
- Indiana.
- Kentucky.
- Louisiana.
- Maryland.
- Minnesota.
- Missouri.
- Montana.
- New Hampshire.
- New Jersey.
- New Mexico.
- North Carolina.
- North Dakota.
- Oklahoma.
- Oregon.
- South Dakota.
- Utah.
- Vermont.
- Wisconsin.
How much a spouse can receive depends on the needs of the older adult, as well as the average wage of a home care aide in your area.
Where to find support as a spouse caregiver
Whether you’re paid or not, caring for a partner is difficult, so finding support is crucial. Here are a few recommendations from caregivers:
Find a local organization
Charlotte Nuessle, a caregiver and certified grief educator in Pittsfield, Massachusetts, utilized Elder Services, a local organization when her husband’s dementia progressed.
“They had a designated caregiver support team member whose job was dedicated to helping caregivers manage the difficulties of caregiving,” she explains. “This team member gave me sage advice, assuring me that caregiving was much harder than I thought, that I deserved all the help I could find and not to stop asking for help.”
Find respite care
In addition to finding someone to help with the housework, Nuessle found respite care. “A gentleman would come weekly and spend an hour with my husband, working on jigsaw puzzles,” she explains. “It was surprising to feel that even this simple support helped me open up to validate my needs as a caregiver.”
Enlist friends
A friend of Nuessle walked with her husband every week and other friends “would have once a month dates, which made all the difference,” she says.
Speak with other caregivers
“There are caregiving support groups just about everywhere — churches, hospitals, senior centers,” MacLellan says. “But I believe the best support comes from one caregiver to another, and when caregivers share their stories, they find the comfort and information they desperately need to help manage their caregiving day.”
Other organizations where Wilson recommends looking for support are:
- Medicaid.
- Your county Area Agency on Aging.
- Disease-specific organizations, such as the Alzheimer’s Association, Parkinson’s Association, American Heart Association and more.
- Hospitals.
- Medicare. “Calling Medicare to learn about other programs can be helpful,” Wilson notes. “Medicare offers one week of respite care annually, and Medicaid recipients are called ‘dual-eligibles,’ as they are eligible for Medicare and Medicaid.”
The bottom line
Not every state pays spouse caregivers, and the ones that do may require work on the front end (and throughout). But if you’re caring for a spouse, taking advantage of these benefits can help in a number of ways.
“Follow the instructions to enroll in a program, complete your training, register with an agency, submit your documentation of work,” explains Wilson, who adds: “Most importantly, make sure to find support for yourself.”
