Guilt. Caregivers will often feel guilty about not being perfect: about losing patience, about feeling resentful, about having to place their loved one in a residential facility, about wanting time for themselves, and on and on. Caregivers also say they feel guilty for “selfishly” taking time for themselves and other such behaviors. This guilt often leads to excessive stress and depression.
Stress appears when you feel overwhelmed by your physical needs, worries, responsibilities or expectations. Symptoms are depression, anxiety, irritability, lack of concentration and social withdrawal. In addition, you may feel anger at your situation or even at your loved one (usually accompanied by guilt!), exhaustion, sleeplessness (from nightly caregiver responsibilities or worries) and a variety of increased health problems. Denial about the disease is also common.
Depression is a major symptom of stress but it often follows loss as well. You feel so low that you lose interest in once pleasurable activities. Depression shares many symptoms with stress, such as feeling sad, anxious, worried, restless, hopeless, helpless, lonely, irritable, guilty, or empty. You may also experience insomnia, fatigue, loss of appetite or overeating, or have problems concentrating, remembering details or making decisions. Although suicide is also a risk, caregivers are less apt to consider this because of their feeling of responsibility towards their loved ones.
The above three often combine in a variety of ways to cause burnout. In fact they go together so much that it is hard to separate them. They are all common with caregivers in general and even more common those that care for someone with dementia. Dementia caregivers also tend to be older than other caregivers and that doesn’t help. We get tired faster and sicker more easily and the dastardly three sneaks in and drives us to burnout.
Burnout is when you feel emotionally and mentally exhausted. A once caring person has little energy left to provide adequate care or often, to even feel concerned anymore. Since stress and depression often lead to burnout, it is no surprise that symptoms include those in both conditions, as well as changes in appetite or weight or both, changes in sleep patterns, increased illness, and even feelings of wanting to hurt yourself or your loved one.
This is a job few people sign up for or train for. However, when it is your loved one, you step up and do your best. It usually involves loss—loss of your way of life, loss of your loved one’s health and even your own, loss of financial security, to name only a few. Family caregiving is usually a 24/7 job, with a growing list of physical, menial and emotional responsibilities that can stress and eventually overwhelm the most dedicated caregiver. When that happens, burnout is present.
Caring for your loved one’s caregiver is your primary job—it must come before caring for your loved one. This idea may sound radical, but it is based on the same principles as the airline steward’s message to don your oxygen mask before you try to help anyone else. Intellectually, most caregivers know this. But we all tend to forget, and to get so involved with caring for our loved one that we forget and let our own self-care go—or we call ourselves selfish when we do something for ourselves when we could be doing something for our loved one. Change “selfish” to self-caring, and let go of that guilt!
Future blogs will discuss ways to avoid burnout.
Read more about these three issues in our books:
A Caregiver's Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders.