Caregiving Blog: Caregiving Burnout

Caregiving burnout is a condition associated with the amount and type of care provided for an aging parent or loved one. Burnout results from the multiple roles and responsibilities of family caregivers. Consistent effort is needed to support good care. Physical, emotional, and mental exhaustion are signs of caregiving burnout.

Caregiver roles and responsibilities include direct care with activities of daily living, monitoring healthcare, communicating with the healthcare system, advocating with providers, and managing family interactions. These activities require significant effort. Developing new skills that caregivers may not possess is part of gaining confidence in the caregiving process.

Caregiving Burnout Challenges

Caregivers who have too much to do and feel that they lack skills or abilities easily burn out. Caregiving roles and responsibilities can be overwhelming when there is so much to do, so little time, and new worries constantly arising. Trying to get everything done has caregivers feeling like they are constantly running just to keep up and trying to manage a to-do list that seems never-ending.   

Communicating with medical providers can be difficult. Caregivers fear making medical mistakes that may harm a loved.  

As the number of healthcare and service providers caring for an aging parent increases, the likelihood of conflict and disagreement also increases. This is similar to the idea of having too many “cooks in the kitchen.” The difference with caregiving is that a team is beneficial to support the care of a loved one especially if multiple healthcare needs exist. The team might be a physician, other healthcare professionals, a caregiving agency, or a care community like a nursing home or assisted living.

Working with Care Teams

Working with care teams to coordinate care for an aging parent can be exhausting and time-consuming. The responsibility falls on the main caregiver to identify and advocate for the wishes of the aging parent. Coordination and communication with the care team must be ongoing to address health concerns and daily needs  

Methods for organizing details of care, for example, creating to-do lists, calendars, and checklists are helpful. It is easy for important information to become lost or forgotten. Having information documented supports confidence to manage the caregiving situation and reduces feelings of caregiving burnout.   

Aging Parent Attitudes Toward Care

Daily stress for the caregiver or the aging parent results in emotional ups and downs. Individuals with negative attitudes or negative expectations experience more negative life events  

Research confirms that “older adults with negative stereotypes about aging were 50% more likely to experience a stressful event (like a hospitalization) than their counterparts with positive stereotypes about aging.” (1) Similar results are experienced by older adults recovering from illness. Individuals with negative attitudes do not recover as quickly or they fail to recover fully from an illness or an accident.

Aging parents and loved ones who are satisfied with the attention and care received from family and paid caregivers experience higher rates of positivity and lower rates of depression. Satisfaction levels result from a variety of circumstances.

Circumstances that result in satisfaction relate to feeling that concerns and worries are addressed. The main concerns and worries from aging parents and loved ones relate to medication errors, wanting personal care needs to be met, and feeling safe in the home. Just knowing that a caregiver is nearby, should an issue occur, is reassuring. This leads to the thought that greater availability, meaning more time and attention from the caregiver, leads to increased satisfaction and reduced worry by aging parents.   

Identifying Caregiving Burnout Behaviors

For a caregiver, acknowledging burnout is a major step. Caregivers typically do not want anyone to think they are unable to fulfill roles or responsibilities. The typical caregiver neglects her or his needs.

Caregiver self-neglect results in anxiety, overwhelm, lost sleep, and physical illness. Caregivers forget that caregiving burnout may result in a total inability to provide care. Where does this leave a loved one who relies on the caregiver? When caregiving burnout occurs, caregivers can become overbearing and negative. 

Below are Common Experiences of Caregiving Burnout:

  • Tired, exhausted, unable to sleep
  • Constant worry or anxiety; the mind constantly works to track long “to do” lists
  • Feeling hopeless or depressed that the situation will not improve
  • Avoiding medical appointments for health concerns that did not exist before becoming a caregiver
  • Experiencing more days of not feeling well physically or emotionally
  • Losing patience, being unkind to the care recipient and others
  • Mood swings, constant ups, and downs, periods of crying
  • An inability to maintain composure and cope when an unexpected event happens
  • Raising the voice or yelling because of feeling frustrated, angry, or agitated
  • Feeling like there is never a break from caregiving, no “me” time
  • Increasing needs of a family member that takes more time to coordinate
  • Family members unavailable to help; the entire responsibility falls on the caregiver
  • The care recipient is thankless, expects care, and may be demanding
  • Constant interruptions: phone calls, text messages etc.
  • Isolation from friends, social activities, and hobbies
  • Thoughts of suicide

Balancing Caregiving

Because caregivers want to be helpful, conversations are rarely initiated with aging parents or family members about care needs, roles, and responsibilities. Care recipients—aging parents, spouses, etc.—are content to have needs met with little responsibility to participate.

Who wouldn’t want to receive assisted living type care in the home for free and not have to put forth any effort? While this is a pleasing arrangement for the care recipient, this represents a challenging situation for the caregiver that leads to caregiving burnout. Balancing caregiving with help from the care recipient should be 50/50 participation when possible.

Refusals to discuss care needs by aging parents is common. Care recipients find the conversation to be “too much” and use delay tactics. Often heard is, “let’s talk about this at another time.”  Delays in conversations that are important to the caregiver raise levels of frustration and allow the situation to simmer until a boiling point occurs.  

The routine of caregiving and care receiving includes having uncomfortable conversations. When care is needed, delaying care discussions increases feelings of anxiety and anger. The” not talking about it” aspect fuels the fire toward the possibility of an emotional blow-up.

Increased dependence on the caregiver, when the care recipient is able to do more but does not, is another recipe for disaster. Aging does not mean automatic declines in health. Nor does aging mean that one is waited on by others. 

Supporting aging parents and loved ones to remain as independent as long as possible is important. While assistance may be required with daily tasks, the idea of “being waited on” has no place in a caregiving relationship that hopes to remain on positive footing.

Developing Coping Strategies

Learning to adapt to change is possible for everyone. Negative events happen daily. As we age, life events present more opportunities to learn to respond to change.

Positive responses to change include coping and being resilient. Coping means identifying options to solve problems that result in stress and anxiety. Being resilient means bouncing back from situations that are unexpected or unpleasant and creating positive ways to move forward. Coping and becoming resilient are two positive response to decrease feelings of caregiving burnout. 

For aging parents, coping and being resilient means finding new ways to complete activities that have become difficult. For example, giving up the car keys. Driving is viewed as independence by older adults. Giving up the car keys and selling a car may feel like the world has narrowed to the confines of the home.

Other options exist for transportation like Uber, Access-A-Ride, and other types of local transportation options targeted for older adults. Friends and family who drive are options. How many of us remember the time before we had a vehicle? We found ways to get around.

Walking is an undervalued ability and one of the main predictors of health and longevity. Physical ability means walking, balance, and gait. Poor physical ability and weakness results in earlier disability and increased ongoing needs for care.  

An example that may be relevant for younger adults is changing from downhill skiing to cross-country skiing. Skiing remains an enjoyable activity. The terrain changes from steep hills to surfaces that are generally flat when one participates in cross-country skiing.

Seeking Outside Solutions

Having a single caregiver responsible for the total needs of another person may only be possible for a limited period of time until another type of support is needed. Eventually, outside solutions for care must be discussed. Time constraints and limitations in the caregiver’s schedule are other reasons to consider outside solutions for care.

The three main options for outside solutions are 1) bringing care into the home, 2) investigating day programs, or 3) exploring options for a move to a care community.

Friends, volunteers, other family members, or paid caregivers, able to provide help in the home, are options to allow a loved one to remain at home with support. Discussing these caregiver options is practical. Discussions about bringing help into the home are practical and should occur early in the caregiving situation and on an ongoing basis.

While aging parents may initially resist the idea of outside caregivers coming into the home, when care is established, the level of acceptance increases. Aging parents learn to rely on outside caregivers as much as family caregivers.

Now About You – Solutions for Caregiving Burnout

1 Involve Others in the Caregiving Situation In the Home

Removing yourself from a high level of involvement in a caregiving situation can be difficult. Caregivers experience guilt about stepping back, doubt that anyone will provide the same level of care, and worry that others involved will not follow through.

Create a caregiving calendar with the involvement of others. The calendar makes it easier to schedule helpers to meet care needs. The main caregiver must stop being the individual who provides the majority of care. It’s time to step back and manage care instead of providing all of the direct 1:1 care for an aging parent.  

After creating the calendar, create a list of tasks to be accomplished during each visit. The task list should include routine tasks for every day. Other preparatory tasks like preparing meals to be used over a span of several days can be included on the task list.

The goal of task scheduling is “time relief” for the main caregiver. If calendaring and scheduling is completed with the right recipe, caregiving burnout may be reduced.  

2 The Caregiving Bridge – Day Programs

If a loved one can be at home alone during evening and overnight periods, it may be possible to identify a day program for support during the day. A day program for older adults is like a day program for young children. The older adult attends the program from 8 am to 5 pm.

Many day programs include meals, medication management, activities, and other care support. Depending on needs, the cost of a day program may be more reasonable than the cost of paid in-home caregivers. A daycare program may be a great option for an aging parent who is on the border of needing to move to a care community but who wants to remain at home as long as possible. 

3 Consider the Option of a Care Community

In some situations, the limitation of involving others to provide help and support in the home may be impractical. If all options have been exhausted for investigating other family, friends, volunteer caregivers, and a day program, the discussion about the care situation must advance to talking about community options.

In some situations, the aging parent may be able to increase the level of participation in care in the home. Increased participation, rather than reliance, is an option to avoiding a move to a are community. In other family care situations where the diagnosis may be dementia or another serious chronic illness, the only option may be a move to a care community.

Taking Action Relieves Caregiving Burnout

Caregiving burnout results from not having a plan and allowing the responsibilities of the caregiving situation to become overwhelming. Working through the steps above to investigate options for outside support confirms that options exist and that situations are not hopeless. It is possible to say no and to set healthy boundaries as a caregiver. 

More time for the caregiver allows more time for self-care. Even a ½ weekend day window of time for the caregiver to pursue hobbies or interests that did not previously exist is a positive step ahead. Regaining control of life and moving past caregiving burnout takes time. Small daily steps toward this goal equal progress for the burned out caregiver.

It is important to realize that you are not alone. Sharing with other caregivers has positive benefits. Caregiving support programs are positive outlets for the stresses resulting from caregiving. 

Support is here!

Sources:

(1) Belligntier, Jennifer A., and Shevaun D. Neupert. Negative Aging Attitudes Predict Greater Reactivity to Daily Stressors in Older Adults. J Gerontol B Psychol Sci Soc Sci, 2018, Vol. 73, No. 7, 1155-1159 doi:10:1093/geronb/bgw086

Pamela D. Wilson, MS, BS/BA, CG, CSA is a national caregiving expert, advocate and speaker who solves caregiving problems. Since 1999, she has been a direct service provider as a court-appointed guardian, power of attorney, and care manager. In response to the need for accessible, accurate, reliable, and trustworthy information Pamela offers on-line caregiving support and programming to solve caregiving problems, advance healthcare literacy, and promote self-advocacy. She collaborates with professionals in the areas of estate planning, elder law, and probate, financial planning, and healthcare to raise awareness of and sensitivity to family caregiving and healthcare issues.

 

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