My loved one might need more care than I can provide. What do I do?

By, Nancy Kusmaul, PhD, MSW

Caring for another person can be rewarding, challenging, and overwhelming . Many caregivers choose to care for family members and friends out of a sense of love, or paying someone back for care they have received earlier in life.  But what happens when you can no longer provide that care?
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There are many reasons that you might not be able to continue caring at home. Family leave in the United States is limited, and you may not be able to take any more time off from work. Certain diagnoses, like dementia, can make it hard to provide care, especially if the person needs supervision around the clock for their own safety. Caregivers need to eat and sleep too, and it can be difficult to be “always on” to make sure that someone with dementia does not get hurt. And sometimes someone’s physical needs are just too much, and the caregiver cannot lift, or move, or provide care without great risk to both the caregiver and the person in need of care.
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If this sounds familiar, you have not failed. However, when we care for those we love, we also need to deal with their, and our, emotions and expectations. It is very common for loved ones to have asked to “never put me in a nursing home” or for family members to have promised not to do so. But sometimes that is just not possible. 

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What kind of care do nursing homes provide?

​In general, two types of care are provided in nursing homes. Short term (also called sub-acute or rehab) care, and long term (custodial care). Short term care might be provided for a few days to a few weeks after a hospital stay to help someone regain strength or heal from an illness or injury so that they can return home.  Long term care is for people who need regular daily help with activities of daily living (such as toileting, bathing, grooming, dressing, and so on), and/or supervision and support due to Alzheimer’s disease or other dementias.

If you think your family member needs long term care, what do you do? 

It can be overwhelming to be a caregiver so step back, take a breath, and consider exactly what it is that your loved one needs help with. Make lists- lists of diagnoses, lists of doctors, lists of medications, and lists of what kinds of care you provide throughout the day. This will help you determine what type of care they need. If the things you do are mostly supervisory and related to dementia, then an assisted living with a dementia unit might be your best bet. If the things you do are a combination of physical and supervisory, or mostly physical you may be leaning more towards a nursing home. A person who needs nursing home care may need a nursing assessment so talk to their doctor or a local area agency on aging if you think this is what they need.

What should I look for? 

The best plan is to go and look at places yourself, if you have time to do this. It helps to start early, even if you don’t really want your loved one to go to a nursing home, so you have the information in case something happens and you need to make a decision quickly.

First consider how important distance is to you. If you are planning to visit often, it may be more important to have the person closer than to choose the perfect place that is many miles away. Visits from family can be an important part of quality of life and quality of care. 

Once you have mapped out your geographic area, look for what is there, considering the types of care you identified that your family member needs. Look at websites and take virtual tours. When you have it narrowed down, find someone to help with your family member and take some in-person tours. If your family member is able to take part in their own decision making, include them in all phases of this process. 

How do I pay for it? 

​In general, assisted living is not covered by any insurance, and the resident is responsible for the entire fee.  Short term nursing home care may be covered by Medicare, after a hospital stay. Long term care in a nursing home is either paid for by the resident or by Medicaid.  If your loved one has long term care insurance call their carrier to find out what their benefits are and how to access it. Long term care insurance might also cover help at home so this is important to explore. 

Where can I find good information about nursing homes?

The Centers for Medicare and Medicaid Services is the federal agency that regulates nursing homes. They provide a nursing home locator where you can find and compare nursing homes in your area on their Medicare website. You can search by state, zip code, city, or even by individual nursing homes. Their ratings are based on three factors: the most recent inspection survey, staffing ratios, and a set of quality measures.

Inspection surveys are conducted about once a year by the state health department on behalf of the federal government. They look for violations of regulations and issue a statement of deficiency.  Their full report is available on the care compare website, as is more general information about the number and severity of the deficiencies.
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Staffing that is reported on the care compare website is the “hours per resident day” of different types of nursing staff (registered nurses, licensed nurses, and nursing assistants), and physical therapy. In these measures, higher is better, because it means that type of staff has more time to devote to each resident. While the numbers themselves may not mean very much to you, they can help you compare one nursing home to another. 
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Quality measures are based on reports that the nursing homes fill out on each of their residents. Quality measures are separated into those for long stay residents and those for short stay residents. If you are looking for long term care, you should focus on the long stay resident ones. An example of a quality measure is “Percentage of long-stay residents with a urinary tract infection”.  For each quality measure the website will tell you whether lower or higher is better (in this case, lower is better), what the home’s percentage is, and how that compares to national and state averages. 

Want to learn more?

Centers for Medicare and Medicaid Nursing Home Locator
​Alabama Department of Public Health Website on Nursing Homes
​Alabama Nursing Home Association

About the Author

Dr. Nancy Kusmaul  is an Associate Professor in the Baccalaureate Social Work program at the University of Maryland, Baltimore County.  She received her PhD from the University at Buffalo and her Master’s in Social Work from the University of Michigan.  She was a nursing home social worker for more than a decade. 
 
Dr. Kusmaul's research focuses on organizational culture, trauma informed care, and the impact of trauma experiences on workers and care recipients.  She is particularly interested in direct care workers, such as Certified Nursing Assistants in nursing homes.  She is co-chair of the NASW-Maryland Committee on Aging and is a fellow of the Gerontological Society of America.  Dr. Kusmaul was a 2019-2020 Health and Aging Policy Fellow.  She has done several podcasts on aging, trauma, and nursing homes on various platforms.  

Dr. Kusmaul is the author of the recently-published book, Aging and Social Policy in the United States. 

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