Recognizing Caregiver Burnout
By Rev Debbie Mechley, Minnesota Hospice
Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude – from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able – either physically or financially. Caregivers who are “burned out” may experience fatigue, stress, anxiety and depression. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones.
What are the Symptoms of Caregiver Burnout?
The symptoms of caregiver burnout are similar to the symptoms of stress and depression including:
- Withdrawal from friends and family
- Loss of interest in activities previously enjoyed; emotional and physical exhaustion
- Feeling blue, irritable, hopeless and helpless
- Changes in appetite, weight and sleep patterns or all of these
- Getting sick more often
- Feelings of wanting to hurt yourself or the person for whom you are caring
- Excessive use of alcohol and/or sleep medications
What Causes Caregiver Burnout?
Caregivers often are so busy caring for others that they tend to neglect their own emotional, physical and spiritual health. The demands on a caregiver’s body, mind and emotions can easily seem overwhelming, leading to fatigue and hopelessness – and, ultimately, burnout. Other factors that can lead to caregiver burnout include:
Role confusion – Many people are confused when thrust into the role of caregiver. It can be difficult for a person to separate their role as a caregiver from their role as a spouse, lover, child, friend, etc.
Unrealistic expectations – Many caregivers expect their involvement to have a positive effect on the health and happiness of the patient. This may be unrealistic for patients suffering from a progressive disease, such as Parkinson’s or Alzheimer’s.
Lack of control – Many caregivers become frustrated by a lack of money, resources and skills to effectively plan, manage and organize their loved one’s care.
Unreasonable demands – Some caregivers place unreasonable burdens upon themselves, in part because they see providing care as their exclusive responsibility.
Of the many challenges affecting today’s 65 million volunteer caregivers, one issue seems to loom over them all: boundaries. In a short-term event such as trauma, surgery, or recoverable illness, the immediate needs of the afflicted usually eclipse the needs of others—and boundaries often go out the window. With a chronic or permanent malady or disability, however, balance regarding the ongoing needs is required. Even with ample funds and support help, the caregiver/patient relationship must incorporate healthy boundaries that allow all parties to live as individuals.
Isolation, lost independence, and loss of identity (what I call the three “I’s”) affect virtually every caregiver. That loss of identity is where the boundary issues often grow to critical levels. Caregivers often struggle in speaking in the first person singular. When asked how he/she is doing, the reply often sounds like “We just got home from the hospital. Our situation is not improving. We’re getting over an episode.” We experience this in the Hospice Care situation often.
An illness or disability can debilitate more than one life if allowed to, and caregivers need to separate themselves from the loved one’s condition. It takes a while for some caregivers to realize that they didn’t cause it, can’t cure it, and can’t control the disease or circumstances their loved one faces. When someone we love suffers, we often throw good sense to the wind— and rush in to return normalcy to that which can no longer be normal. It is unsustainable, but our emotions are involved and that usually means we have yet to discover our own powerlessness—while also failing to see things as clearly as we would like. Throw in an ample supply of guilt, obligation, and resentment, and we have a swirling cauldron of dysfunction.
One simple word launches a path toward a healthy identity and boundaries: “NO.”
Saying “no” to the constant demands and often craziness involved in a caregiving scenario is hard work and unpleasant—and there will be blow back. Nevertheless, standing your ground as a caregiver and not capitulating to every request is necessary for the caregiver’s own survival. The neediness of the patient will drown out the cries of the caregiver—and dementia, personality issues, and/or pharmaceuticals exacerbate that neediness. It is unwise to expect a sick, elderly or medicated individual to show leadership in this area, and so that burden falls on the part of the caregiver. The patient often only feels and sees an immediate need—and cannot always recognize the fatigue, stress and dangerous health patterns of the caregivers. Moreover, even if they do see them, patients may be unable to process how those warning signs can detrimentally affect their situation long term.
Usually armed only with love and a sense of responsibility, caregivers recklessly deplete themselves in trying to care for a vulnerable loved one. The love and responsibility are admirable traits, but how long can the patient “feel better” at the caregiver’s expense? Caregivers must direct that love and responsibility to their own well being first.
“In the unlikely event of the loss of cabin pressure, oxygen masks will drop from the ceiling. Securely place your mask on first, before helping anyone next to you who may need assistance.”
That small directive contains applicable wisdom for so many life circumstances – but probably none as poignant as for those of us serving as a caregiver for a chronically ill/disabled loved one.
Compassion and love often mistakenly lead us to hold our own breath—while trying to help someone else breathe, but once we make that decision, it is only a matter of time before we find ourselves gasping for air. If we are unable to breathe, how can we help anyone else?
In order to put the mask on yourself, you must often tell someone else who is struggling: “No.” Truly loving that person means you will look to your safety first so that you can better care for them. They may not understand this, and may even castigate you for it—but it is the right thing to do.
If your loved one wants you to stay at the hospital around the clock, you can choose to say, “No,” and go home and get some rest while allowing the hospital staff to care for them. Going without proper rest will only weaken your ability to care for your loved one. You are not abandoning them. You are caring for them better by strengthening their main support system—yourself. Again, this is a discussion about long-term issues, not isolated, short-term medical events.
If your loved one wants you to let them drive, and you know that they are not able to, you can choose to say, “No.” They may see that decision as limiting their freedom, but you can stand firm knowing you are protecting their safety (and the safety of others). The list goes on, but the point stands.
Saying “no” isn’t cruel; rather it implements healthy boundaries. Although your loved one may not respond positively to those boundaries — living without enmeshment while maintaining your own identity will most certainly allow you peace of mind, strength for today and bright hope for tomorrow.
All people deserve love, compassion, and dignity at end-of-life. At Minnesota Hospice, we strive to empower people to live life as fully as possible on their terms. Our team is filled with experienced professionals dedicated to walking with you during this part of life’s sacred journey. We provide the highest level of hospice care possible to help people find meaning, purpose, love, and beauty in living before departing life peacefully.