In recent years, the National Alliance for Caregiving estimates almost 40 million people in the U.S. care for a disabled or chronically-ill adult family member (aged 50 years-old or more). These numbers have grown and continue to grow as Americans are living longer, but also living with more disease, such as Alzheimer’s and other chronic illnesses. It’s no wonder we are hearing the terms caregiver stress, caregiver burnout and caregiver depression more in society, as well as in clinical practice.
People often ask me if these are the same things and I usually respond by saying no, but there is quite a bit of overlap in the three terms and while they are common experiences among caregivers, they are all treatable with a number of coping skills, resources, and sometimes when necessary, medication and/or psychotherapy. I also try to help people understand that the stress of the caregiver role affects different people differently.
In practice, I often use the terms caregiver stress, caregiver burnout and caregiver depression on somewhat of a continuum:
Caregiver stress – is characterized by symptoms of denial, anger, some withdrawal, worry, exhaustion, sleeplessness, irritability, poor concentration and sometimes an increase in health problems. Often, several focused changes in daily living practices on the part of the caregiver can help improve their emotional state. Here, increasing use of coping skills (like meditation, relaxation, exercise, balanced diet), educating yourself about your loved one’s illness and resources for help or additional care, and finding support outlets to share feelings (either in friends, loved ones or in virtual or live support communities) are what the caregiver needs to start feeling more like themselves again.
Caregiver burnout – is similar to caregiver stress, but I see it as a little more complex and debilitating than caregiver stress. So, if seen on a continuum, caregiver burnout could be viewed as a little more “severe” than caregiver stress and is often from a longer amount of time caregiving or a situation of more caregiving demands or complications (additional financial burdens, needing to care for more than one ill individual, transportation issues, etc.) In addition to these symptoms, the individual experiencing caregiver burnout might also be experiencing overwhelming fatigue, increased social withdrawal, feelings of being controlled by the caregiving responsibilities, difficulty coping with everyday tasks, lowered resistance to illness, and changes in eating and sleeping habits. Again, the coping skills above can be useful here. Additionally, professionals and caregivers who have been there recommend:
- Giving yourself permission to take breaks from caregiving
- Taking care of yourself and your own doctor’s appointments
- Making time for yourself each day (even if only 15 minutes for mediation or a cup of tea)
- “Say yes” to offers of help and try to schedule them ongoing (e.g. if someone offers to take your husband to his haircut, see if they can commit to doing it once a month)
- Make a consistent effort to do something social that you used to enjoy (it may mean being open to having another relative or respite care worker care for your loved one for a few hours a week)
- Caregiver support groups online or in-person are a good way to get recognition for common feelings and frustrations. The demands of caregiving can be overwhelming and others going through it often understand this best. They can also sometimes give good suggestions for how to cope with certain situations and emotions they have already had to manage themselves.
Caregiver Depression – again might be characterized by symptoms already described above for caregiver stress and burnout, but also by possible significant feelings of guilt and worthlessness, hopelessness, thoughts of death (i.e. dying or suicide), loss of interest in previously pleasurable activities and difficulty concentrating. Often these symptoms are very debilitating to the caregiver and despite attempts to use the coping skills already discussed, they do not improve. In all of these situations, the caregiver should try to openly communicate their experiences and symptoms to their physician and in the case of caregiver depression, the use of medication should be considered in addition to some psychotherapy and/or support groups.
Here are some additional coping skills that have come up in my work with caregivers, especially spouses. Sometimes “real-world advice” that comes from someone who has “been there” is very helpful:
- Do things to feel empowered (like embracing your choice to be a caregiver)
- Recognize guilt and let it go (try using mantras like “I love my spouse, I’m doing the best I can.”)
- Make a list of ways you are helping your loved one (to look at when it does not feel that way or they try to tell you differently)
- Try to focus on things that are within your control and let go of the ones that you can’t
- Remember that you can’t provide good care to your loved one if you do not take care of any physical or mental health problems of your own that need treatment
- Do everything you can to avoid being alone or isolated with your caregiving frustrations
- Remember the importance of sleep and get some whenever you can!
Remember you are not alone! Reach out to professionals, friends and loves ones, and visit the following sites for additional resources and support for caregivers.