Complicated Caregiving: How to Keep Yourself and the Older Adult in Your Care Safe

Do you have a parent, spouse, or another older adult in your life who depends on you for help? If you’ve fallen into a pattern of helping with groceries, cooking, medications, health care, managing bills or other financial matters, transportation, or emotional support, you’re likely a caregiver.

While some people immediately recognize themselves in that role, others may see themselves as simply helping out with a few tasks that someone else can no longer do on their own. This aligns with one national survey that found that 53% of people providing support to older adults in their lives don’t identify themselves as caregivers.

Assuming for a moment that you may be a caregiver, that means you probably are taking on some amount of responsibility for another person’s well-being. In my work as a social worker in the field of aging services and the program director for the Center for the Prevention of Elder Abuse and Neglect, I’ve seen how caregiving without enough support, relief, or resources can become incredibly overwhelming over time. When caregiver stress and burnout reach unmanageable levels, the needs of an older adult in somebody’s care may go unmet. 

Unintentional neglect: When caregiving is unmanageable 

Research has shown that caregiver stress, isolation, relationship conflict, and a lack of support can increase the risk of neglect — especially when caregivers are managing multiple responsibilities or caring for someone with complex needs. 

Neglect is the failure to meet an older adult’s needs, such as food, water, shelter, clothing, hygiene, and essential medical care. It can show up as:  

• Unusual weight loss, dehydration, poor nutrition, or untreated bed sores
• Untreated medical needs or lack of access to health care 
• Poor personal hygiene or unclean living conditions (e.g., dirt, bugs, or soiled bedding and clothing) 
• Home safety hazards (e.g., no heat, lack of running water, or electrical problems) 
• Abandonment of an older person at a medical facility, shopping center, or other public place
• An older adult reporting that they are being neglected

Even when neglect is unintentional, it still affects a care recipient’s health and quality of life. In some situations, well-meaning caregivers and older adults may be contacted by Adult Protective Services or other medical or social service providers because others have become concerned that neglect may be happening.

Why does unintentional neglect happen? 

Neglect can be more likely to occur when caregivers:  

• Don’t fully understand an older adult’s needs
• Lack the capacity to care for someone
• Are experiencing caregiver burnout 
• Disagree with prescribed medical care
• Are unaware of services that could help meet their needs
• Do not believe they need as much assistance as they do 

Relationship dynamics also play a role. Understandably, a difficult or painful history or ongoing conflict may make it feel harder to show up for someone day after day.

Acknowledging such challenges and recognizing early warning signs can help protect both you and the person in your care from reaching a crisis. 

People become caregivers for different reasons

Caregiving is frequently portrayed as a deeply rewarding experience. Many resources for caregivers reference caring for “loved ones.” The reality is, people provide care for many reasons, and “love” may or may not be at the top of your list. Caregiving may make you feel frustrated, sad, guilty, tired, fulfilled — or all of the above, sometimes all within the same day.

That’s nothing to be ashamed of. Family dynamics are complicated. Relationships that last across the lifespan can be meaningful, but they might be just plain difficult. If you are doing your best to help an older adult in your life who may not have provided the care or support you needed earlier, we see and recognize your efforts.

Whether you are motivated to provide care out of a sense of duty, because it aligns with your values, because you feel you have limited options, or because of love, you are in good company.

No matter the reason, caregiving can be hard to manage. You may be balancing work, parenting, finances, your own health issues, and other responsibilities while the older adult in your life develops increasing care needs. Over time, that pressure can build up.  

Support is available for caregivers and older adults 

Asking for support might feel hard. You may feel unsure of where to start or hesitant to acknowledge that caregiving has become difficult to manage on your own. But connecting with the right services can be a great way to ease some of the pressure building in your life and help ensure that the person in your care gets all their needs met.

Some support options available to caregivers and older adults in Massachusetts include: 

• Aging Services Access Points, Councils on Aging, and Area Agencies on Aging coordinate and offer programs and services throughout the state for older adults and caregivers. If you’re unsure where to begin, MassOptions can help connect you with the right services for your needs. You can explore resources online or call their confidential call center at 1-800-243-4636 to speak with a trained specialist. 
• The Family Caregiver Support Program in Massachusetts connects family caregivers of adults aged 60+ or people living with dementia with a specialist at no cost. The program offers referrals to services and resources, counseling and training, and respite care. 
• The Alzheimer’s Association of Massachusetts and New Hampshire offers a 24/7 Helpline, in-person and online support groups, and free educational programs for families and individuals facing Alzheimer’s disease. 
• The Program of All-Inclusive Care for the Elderly, or PACE, is a Medicare and Medicaid program that helps people receive coordinated health care services within the community rather than in a nursing home or other long-term care facility.
• The Deanna and Sidney Wolk Center for Memory Health offers family and caregiver support, including individual and family counseling, memory support groups, caregiver education, and resource coordination for memory loss. 

Reaching out is a sign of strength — it’s one way to protect both yourself and the person in your care.

Learn more about our elder abuse shelter and prevention program

At the Center for the Prevention of Elder Abuse and Neglect, we provide safe transitional shelter and services for seniors suffering from abuse, neglect, or financial exploitation, and we work to prevent elder abuse by increasing awareness and providing education. To make a referral, inquire about services, or explore education opportunities, visit the Center’s website today. 

Rachel Lerner, Esq., also contributed to this blog post.

The Center for the Prevention of Elder Abuse and Neglect is supported in part by a federal grant from the U.S. Department of Health and Human Services, Administration for Community Living (HHS/ACL), and the opinions stated in this blog post are not necessarily those of HHS/ACL.