When providing care for a terminally ill loved one, caregivers can often neglect their own needs. This neglect, over time, can exact a heavy toll on the overall well-being of a caregiver. Judy Waechter, Community Educator for Crossroads Hospice, sat down with Steve Kuker of the Senior Care Live radio show to discuss the definition of a caregiver, the costs of caregiving, and tips for caregivers to provide themselves with the care necessary to give more richly to their loved one.

By recognizing the toll of caregiving, and the need to provide themselves with care first, caregivers can reliably give their loved ones the high level of care that facilitates a dignified and comfortable end of life

Who Is a Caregiver?

Caregivers often view the tasks they perform as simply giving their loved one a little help. “And when you look at that little help, it’s full-time help,” states Judy Waechter. Though caregivers are performing, in most cases, full-time help, they are often reluctant to define themselves as a caregiver. “The healthcare community will say that you’re a caregiver if you’re providing emotional or physical support or care to someone else, but the reality is that that is so obscure. We have to look at what the actual day-to-day details are,” shares Waechter. Common caregiving tasks include:

Cooking meals for a loved one

Caring for the housekeeping duties in a loved one’s home

Providing transportation to a loved one unable to transport themselves

Paying bills and handling other financial matters

Caring for the lawn and other outdoor maintenance for a loved one’s home

Providing companionship to a loved one who has lost social connection

Getting prescriptions filled and picked up for a loved one

Providing a loved one with reminders for medication and other tasks throughout the day

How Caregivers Come into Their Role

When a terminal diagnosis, sudden accident, or another life-changing event befalls a loved one, caregivers step forward in recognition of their loved one’s need for care, compassion, and support. The transition to the caregiver role often occurs naturally over time. “... frequently what we see is that someone has adapted to the role over a long period of time because someone is declining very, very gradually, ” shares Waechter. Waechter, however, reveals that caregivers more commonly come into their role suddenly, often as a result of:

A loved one’s medical emergency

A sudden accident involving a loved one

A loved one’s wandering off away from home

When suddenly placed in this new role, caregivers often reach out to family, friends, and neighbors who have personal experience in caregiving. However, “that’s an expert of one,” Waechter stresses, “which is why we really want people to reach out to those of us that are doing this every day so that we can share with them the advantages that we have available to us through community resources and different pieces of the healthcare system.”

Profile of the Average Caregiver

Statistically, women often fill the caregiving role, comprising nearly 70% of United States family caregivers. “A lot of it has to do with gender roles and cultural roles...” shares Waechter. “It also has to do with the fact that there’s more women and that we live longer.” The majority of female caregivers are also working caregivers -- caregivers who are balancing a job away from home in addition to their caregiving responsibilities -- and are commonly 45 to 49 years of age.

The Costs of Caregiving

Caregivers devote a large amount of time, energy, focus, and financial resources in providing care for their loved ones. This provision of care, however, can exact a toll on the overall well-being of a caregiver over time.

The Time Cost of Caregiving

The time involved in performing caregiving tasks can quickly add up. According to a joint study performed by The National Alliance for Caregiving and AARP, caregivers, who comprise nearly 25% of the adult population, devote an average of over 20 hours per week to their caregiving duties. “That’s huge,” states Waechter. “There’s very few other roles, or hobbies, or people in our lives that get 20 hours of one-on-one time.”

The Financial Cost of Caregiving

“It’s not only a time cost. It’s a financial cost,” shares Waechter, “because, typically, we are doing this without being paid, but we’re also spending additional funds to help out these individuals.” Additional financial costs that can befall caregivers include:

Purchasing prescription medication

Buying groceries for the loved one’s home

Transportation costs involved in providing care

Some financial costs may not be directly linked to the care of a loved one, but are present due to caregivers being exhausted or not having enough time to devote to the tasks in their households. Examples of these costs include:

Frequently buying take-out meals due to lack of time and energy

Hiring lawn care maintenance for the caregiver’s home

Hiring housekeeping assistance to maintain the caregiver’s home

The Cost of Focus for Caregivers

Nearly 1/6th of caregivers work outside of the home at a full-time or part-time position in addition to their caregiving duties. Caregivers’ focus at work can suffer as their mind is focused on their loved one’s needs even while at work. “We’re physically present, but we’re not always 100% mentally engaged in the work that we’re doing, and that is an impact to people’s quality of job performance,” states Waechter.

Caring for the Caregiver

Taking Inventory and Planning Ahead

Though the role of caregiver can be thrust upon someone suddenly, it is important for caregivers to take the time to analyze their caregiving responsibilities and understand potential resources that may be available. “One of the first things we really have to do is early self-identification when we’re in a caregiver role,” urges Waechter. “Take an inventory of what you’re really doing, and be realistic about it, and plan ahead.” Helpful preparatory steps can include:

Gaining an understanding of the terminally ill loved one’s diagnosis and symptoms

Obtaining the loved one’s important legal and financial documentation

Understanding the insurance coverage that the loved one may have

Caregivers Are Not Alone

After caregivers gain an understanding of their loved one’s needs and the potential caregiving resources available, Waechter suggests that caregivers incorporate this information alongside their available community and familial resources. Understanding and leveraging these caregiving resources help ensure that caregivers are not assuming all of the caregiving responsibilities alone. “We can’t do it all ourselves,” notes Waechter, ”so we don’t encourage anyone to try to.”

Reaching out to family, friends, and professional caregiving services for help can allow caregivers time to relax and recharge. “...with hospice, Medicare actually has a respite benefit where the individual who is receiving care can be placed in a facility for up to 5 days to allow recovery and rest for the caregiver,” reminds Waechter. By using available resources and understanding that no caregiver needs to provide care alone, caregivers can give quality care to their loved one while being able to take time for themselves.

Tips for Caregiver Well-Being

Many caregivers often forego their personal wellness when seeking to provide their loved one with care; however, caregivers neglecting their own needs can quickly become burned out or sick. Illness and caregiver burnout can greatly inhibit a caregiver’s ability to provide care. “We have to remember that to care for others, you have to be in good enough shape to be able to take care of them,” reminds Waechter, “so you have to take care of you first, and that charity begins at home...” For caregivers to continue providing quality care for their loved one, Judy Waechter recommends:

Getting enough restful sleep at night.

Maintaining a balanced diet to provide energy throughout the day

Relaxing in creative ways that reinvigorate and reenergize

It is also important to set boundaries as a caregiver. Though it can be difficult to refuse others’ requests, it is important that caregivers do not overcommit to others. Overcommitment can add additional stress and responsibilities to an already full schedule. “If you are very uncomfortable setting boundaries and saying ‘no,’ then practice saying it in nice ways,” suggests Waechter, and recommends the use of a few helpful phrases when learning to not overcommit:

“I wish I could, but I can’t this time…”

“Thank you for asking. I’m sorry I won’t be able to…”

“I can’t do this, but I can do this for you…”

Caregivers are driven by their heart of compassion and the desire to support their terminally ill loved one on the end-of-life journey. From this desire to care and support others, caregivers can, at times, neglect their needs. By recognizing the toll of caregiving, and the need to provide themselves with care first, caregivers can reliably give their loved ones the high level of care that facilitates a dignified and comfortable end of life.