When caregiving becomes complex

By Linda Pellegrini, M.S., G.N.P.

People often think of caregiving as helping a friend or family member by running errands, cooking meals, attending medical appointments or helping with bathing. Those are just a few of the tasks you may find yourself doing as a caregiver early on.

Your role may gradually—or suddenly—become much more complex if your loved one’s health declines. Sometimes families have nurses come in to assist, but that usually only lasts for a short period of time. For other families, home nursing care isn’t available at all.

That means that, these days, family caregivers are often taking responsibility for complicated, difficult tasks that used to fall to medical professionals.

What caregiving tasks are complex?

According to the National Alliance for Caregiving/AARP Public Policy Institute report “Caregiving in the U.S. 2020,” 58% of caregivers are helping with complex medical or nursing tasks like:

• Caring for wounds
• Managing a feeding tube
• Giving oral, intramuscular or intravenous medications
• Tending to a catheter
• Preparing special diets that require specific measurements, guidelines, constant monitoring and equipment for preparation or feeding
• Helping with toileting and incontinence issues
• Managing colostomy care
• Operating hospital beds, wheelchairs, oxygen tanks, nebulizers or suctioning tubes
• Coordinating care by scheduling medical appointments and arranging in-home care and services like physical, occupational and speech therapy

If your love one is living with dementia, you may find it even more challenging to manage complicated care like this.

Ask for help

If you’re doing any of these complex tasks and have anxiety about it, you’re not alone—it’s not unusual for caregivers to feel overwhelmed. About half of family caregivers responsible for medical/complex tasks worry about making a mistake that could have a negative effect on their loved one, according to a 2020 report by the Home Alone Alliance. It’s important to know where to turn for technical help, especially about medical or nursing tasks like these. The work being required of you is difficult.

Whenever you have questions or concerns, your first step should be calling your loved one’s medical provider or, if you have one, the visiting nurse service that provides care. Ask them for the advice and help you need. Also ask them to recommend any community resources that may be able to help you and your loved one.

Complex tasks without intuitive answers

Many people become caregivers—or go from simpler to more complex caregiving—when the person they care for is being discharged from the hospital or a rehabilitation facility. Maybe they had surgery and go home with a wound that requires a complex dressing or a surgical drain that needs to be maintained. Or perhaps they have a catheter that needs to be managed correctly to avoid infection and observed carefully for signs that an infection is developing.

Some patients move from one care setting to another with an overwhelming medication list. When do you give the medications? How do you give them? What side effects can there be? What are the signs that it’s working as expected? After hip surgery, it’s common to need blood thinners injected twice a day for four to six weeks. How would any layperson know how to handle these situations?

If family caregivers are expected to do complex tasks, they must be taught how to do them and how to get answers to any questions that come up. These are not simple tasks with intuitive answers.

Learn about the CARE Act

The need for family caregiver training—while their loved one is still in the hospital or rehab facility—is finally being recognized. The Caregiver Advise, Record, Enable (CARE) Act requires hospitals—in most states and including Massachusetts—to facilitate communication between health care professionals and family caregivers. Hospital staff must:

• Advise the patient that they can identify a family caregiver
• Record the caregiver’s name and contact information in the patient’s health record (with the patient’s permission)
• Enable family caregivers by providing as much notice as possible about discharge timing, consulting with them about the discharge plan, discussing their role in carrying out that plan, and teaching them about the medical and nursing tasks needed at home

With training on relevant medical tasks and written instructions for continuing them at home, family caregivers can provide effective care for their loved ones at home. While I always advise calling your loved one’s medical provider when you have concerns, it’s amazing what you can learn from YouTube videos made by reputable sources, such as hospitals, universities and professional nursing and home care organizations.

To move someone who can’t move independently, for example, you benefit from learning how to use a gait belt to provide stability. The Family Caregiver Alliance’s “Caregiver College Video Series” has helpful instructions for transferring someone, tips for managing toileting and incontinence and much more.

Other good resources for information that can help with complex caregiving include:

• UCLA Alzheimer’s and Dementia Care Program’s Caregiver Training Videos
• Alzheimer’s Association
• Physical or occupational therapy websites and nursing organizations
• Aging Services Access Points in Massachusetts
• National Association of Area Agencies on Aging

Take care of yourself

Caregivers of all types tend to put off taking care of their own health while working to take care of a loved one’s needs. If you’re managing complex caregiving situations, this lack of self-care—and its negative long-term effects—are even more common. You’re completely caught up in the day-to-day of caregiving, and you simply don’t have time for yourself.

But that’s exactly when and why you need to make the time. If you don’t replenish yourself, you’ll feel burned out eventually. With complex caregiving, it’s essential to create opportunities for respite. In addition to asking family and friends for help, consider hiring professional caregiving help, if it’s available for you. Your local Area Agency on Aging can help you find resources, including some that may be free. Having help and respite can make a big difference in your ability to continue to care for your loved one.

Linda Pellegrini is a Gerontological Nurse Practitioner in the Division of Geriatrics at UMass Memorial Medical Center. She is also a member of the “Are you a caregiver” Project, which includes faculty, graduate students, health care providers and elder care advocates from UMass Worcester’s Graduate School of Nursing, UMass Memorial Medical Center’s Division of Geriatrics and Elder Services of Worcester Area. The Project aims to help people self-identify as caregivers and gain better access to resources and services.