AgingInPlace May 2021

Caregiver burnout is a state of physical, mental, and emotional exhaustion. Burnout in this sense may come in a change in attitude – from positive and upbeat to negative or apathetic. Also known as caregiver strain and burden, it can happen when help isn’t available, or if a caregiver tries to do more than he or she has the time, money, or energy to manage.

It is easy to become so engrossed in looking after others that you neglect your own emotional, physical, and spiritual health. The demands on your body, mind, and emotions can take over, leading to fatigue and hopelessness. Many caregivers feel guilty if they spend time on themselves rather than on an ill or elderly loved one.

Sometimes their own children and other home responsibilities fall by the wayside. Overexerting yourself can mar the quality of your sleep and impede your ability to relax and unwind, or effectively care for anyone. Ultimately, you will burn out.

If you are responsible for an aging loved one, it’s normal to want to be there for them and offer the best care possible. It is natural to feel frustrated, sad, lonely, or even angry. But it’s also important to recognize the signs that you are overwhelmed and to find ways of lightening the workload.

Caregiver Burnout Facts

• In the past five years, over 40 million family caregivers provided 37 billion hours of care for loved ones. The value of this care is estimated at $470 billion.
• At least 20% of adult children are taking care of an older parent.
• About 85% of family caregivers in the U.S. do not receive any respite care.
• The last phase of life is generally 4.5 to 5 years.
• Nearly half of family caregivers over age 40 handle medical tasks, from changing bandages to inserting catheters or feedings tubes. Among that group, only 47% say they have received adequate training to perform those tasks. But more than 90% of family caregivers say they value the experience.
• Nearly half of caregivers have trouble balancing work and caregiving.
• Men are more likely to have employers who are not supportive of their caregiving duties.
• Of working caregivers, 8% state that they have been sidelined from job-growth opportunities because of their caregiving responsibilities.
• Alzheimer’s disease and other mental-health conditions are more stressful on caregivers than dealing with physical ailments.
• Half of adult caregivers say it’s moderately or very difficult to balance work and caregiving.
• Three-quarters of the respondents found it to be stressful, and more than half found it to be overwhelming.
• Depression affects 20 to 40% of all caregivers.
• In the U.S., most caregivers are female and the patient receiving home care is the caregiver’s mother.
• Women have been found to be more susceptible to caregiver burnout than men. Those who are responsible for helping someone with Alzheimer’s disease, dementia or a debilitating illness are also at a high risk of developing their own medical issues.
• Nine out of 10 caregivers surveyed said that even with all the burdens, caring for their loved one is worthwhile.

Signs of Caregiver Burnout

The early signs of burning out are when you find yourself becoming irritable and strained. You might start to feel angry. If you aren’t working because of your caregiving duties, you might worry about money and how you’ll manage everything. You may also experience:

• Emotional and physical exhaustion
• Feeling pulled in two directions
• Withdrawal from friends, family, and other loved ones
• Loss of interest in activities which you previously enjoyed
• Changes in appetite, weight, or both
• Changes in sleep patterns
• Getting sick more often
• Feelings of alienation, helplessness, or hopelessness
• Lack of energy to do new things
• Feelings of wanting to hurt yourself or the person for whom you are caring
• Excessive use of alcohol, medications or sleeping pills
• Losing control physically or emotionally
• Feeling stressed in the patient’s presence
• Difficulty concentrating
• Missing appointments

If you recognize the warning signs of burnout, it will only get worse if you ignore them or keep them to yourself. Take steps to get your life back into balance. There is a point at which you must communicate your feelings to your family and doctor.

Root Causes for Caregiver Burnout

It doesn’t take a psychology degree to understand that caring for someone else can involve high amounts of stress. But it helps to identify common threads in most burnout situations:

Expectations of oneself – This can take many forms. Many caregivers expect their participation in the patient’s care to have a positive effect on his or her health and happiness. This is unrealistic for patients with dementia or a progressive disease like Parkinson’s. Others must divide their time between caregiving and working at their jobs.

Still others place unreasonable burdens upon themselves by viewing caregiving as their exclusive responsibility: only they know how a husband likes his clothes folded or how Dad likes his ham sandwiches. If no one else seems to know the patient so intimately, they could grow accustomed to refusing help.

Expectations from others – Sometimes the patient or other family members may place unreasonable demands on the primary caregiver. If any relatives neglect their own responsibilities, this shifts even more burdens onto the primary caregiver. Some caregivers also feel societal pressure that they aren’t doing enough. While friends and neighbors are quick to praise a “long-suffering” son, daughter, or spouse who stays at home and puts his or her life on hold for their loved one, they may not understand or sympathize with anyone who cannot make such a “noble” sacrifice.

Loss of control – It is frustrating not to have enough resources or skills to effectively manage someone’s care. Caregivers are taken for granted, and they are invisible in the system. Most are not specially trained for their demanding responsibilities. This breeds uncertainty, and uncertainty often sets the wheels of burnout in motion as an aging parent grows more helpless.

Role confusion – Being thrust into the role of caregiver can be hard to process. It can be difficult to separate your new role as caregiver from your role as spouse or child.

Many caregivers cannot recognize when they are suffering the early signs of burnout and eventually get to the point where they cannot function effectively.

Triggers

Triggers happen in different ways. One common burnout trigger amongst caregivers is fecal incontinence. Or it could be another event the patient cannot control, like a fall. With dementia patients, a breaking point creeps up on even the most committed caregiver, especially as the nights grow more and more sleepless. Individuals with Alzheimer’s, for example, may wake a spouse every few minutes, become violent, cause a public disturbance, or wander away from home. All these things can trigger burnout.

If you don’t recognize or prepare for potential triggers, you could snap or blow up at things you know your loved one cannot control. Extreme burnout is very dangerous. That’s why it is important to know and take stock of its signs. Being aware of symptoms of burnout – and preparing for stress-inducing events that can happen to your loved one due to his or her condition – can help you properly manage stress and protect yourself.

Caregiver Burnout vs. Depression

Sometimes burnout manifests as depression. If this happens, a caregiver might turn to escapist behaviors like drinking, drugs, sex, or compulsive behaviors. It might also indicate depression if you want to sleep all of the time. As with normal burnout, depression may make you feel too tired to socialize or engage in your favorite pastimes.

The caregiver burden does progress over time.  You may feel fine in the beginning and confident that the situation is under control, only to have trouble as the patient’s condition worsens, neglecting things like exercise and self-care. As the burden of caring for your loved one increases, the depression generally gets worse. That’s a huge risk. If you do not address your depression, the quality of your care goes down as well. This calls for a critical doctor’s appointment. You might need medication or counseling. Most of all, it is important to recognize that this is a very common scenario.  Even if you don’t have time for everything, you must make time for your emotional well-being.

Coping – Or Preventing – Caregiver Burnout

Get help. If you aren’t able or willing to upgrade the level of care, make sure that someone else is close by. Recruit other family members to pitch in, but if that doesn’t work out, consider hiring an aide to help with daily living activities. They can remind patients to take their medications and help coordinate medical checkups. Look into adult day services in your community, which sometimes provide care in a group setting for older people who need supervision.

A licensed therapist can help you find coping strategies for dealing with your mounting pressure of being a caregiver. Talk therapy and relaxation techniques can help curb stress. Also look into online and offline support. Online resources may work the best because of your caregiving demands, but local support groups – especially disease-specific organizations – can be exceptionally helpful and worth putting in face time.

Be realistic. Sit down with your loved one – or family members if the patient’s cognitive abilities are compromised – and draw up a list of what you think you can do and what you may need to hire help for as time goes on. Make a plan, with everyone’s involvement, so that you are aware of your limits. The time could come when you must limit your caregiving to being a patient advocate rather than providing hands-on care. Setting boundaries from the outset will ease your burden in the long run and help you accept change without guilt.

Consider watchdog technology. Smart home devices have enabled remote control of many household systems. This allows you to monitor thermostat temperature, water leaks or floods, appliance and light usage, and much more. Video and sound surveillance can offer peace of mind to those who cannot be with their loved ones constantly. A digital tool can provide medicine reminders, health coaching, automated alerts, and an interactive avatar that can offer psychological and comforting support.

Make full use of community resources. Seniors might be eligible for low- or no-cost services, such as visiting nurses, meal delivery and adult day programs. This network of support further can alleviate caregiver stress.

Find ways to mass communicate. Of course everyone wants to know how your dad’s surgery went, but it can be exhausting trying to inform people individually over the phone or by email. Sites like CaringBridge and MyLifeLine allow you to send messages to everyone all at once. You can also write a blog post or social media post. These platforms allow you to adjust your privacy settings accordingly if you don’t want it appearing to the general public.

Educate yourself about your loved one’s condition. It’s likely that your loved one faces several health issues, takes multiple medications, and has multiple healthcare providers. Look for ways you can build your care skills – some organizations and local hospitals may even offer classes specific to your loved one’s disease that can aid you in the process. You can also learn about safety considerations, behaviors and tips on how to manage daily living activities like dressing and bathing.

Respite Care

If you frequently bristle from a lack of privacy or feel you just can’t manage any more, take time off to recharge your batteries.  A weekend is not always sufficient, but a week’s break can make a big difference. Studies have shown that respite care at least once or twice a year improves a caregiver’s resiliency.

There are different ways to approach respite. Another family member can fill in for you for a week, or the patient can go into respite care. You could arrange for brief, periodic respite hours while someone else cares for your loved one. If you don’t have the funds for adult day care, look into services through your house of worship or your area’s aging office. 

Many rehabilitation, assisted living, and nursing facilities offer short-term respite care so caregivers can go on vacation or enjoy a day or two without having to physically check on an elderly parent. More communities are starting to offer nightly or weekend respite care, and a few even offer 30-day stays. Some localities offer respite camps, where patients are cared for at a peaceful wooded retreat or similar relaxing setting.

Respite facilities generally have 24-hour staff to monitor residents and provide meals and entertainment. The change of pace can also be stimulating for the senior. If long-term care is in the future, respite care can be a gradual introduction to a new life. Be aware that Medicare’s hospice benefit may cover some respite services.

Self-Care

Self-care is critical. Taking care of your physical health is a good way to stay emotionally healthy. Plan health goals and work toward achieving them – this should include a good sleep routine and exercise a few hours every week. Be sure to eat healthily and drink plenty of water, even if traveling to your loved one’s house limits your time. Avoid tobacco and alcohol and choose good nutrition. Let your doctor know that you are caregiver and ask about recommended immunizations and screenings. Daily relaxation and meditation practice can also be beneficial.

Advance Care Planning

With today’s medical advancements, patients live longer. This means that you must think in terms of resiliency and multi-year endurance. But if you think long-term, you will consider what you will do if something happens and plan for it.

Think through how you can respond to a possible crisis – if you or a helping family member gets sick or in an accident, or if the patient becomes unable to walk or has a stroke. Determine how you can adjust to that situation and still keep him or her comfortable. If you don’t plan for emergencies and something happens, your stress will go through the roof. But with a solid Plan B in place, the situation will feel like less of a setback.

Ideally, the entire family should be involved in making these plans and dividing the responsibilities.  But in practice, one relative often does it all and the others informally come in. Have an open discussion about the patient’s non-negotiable needs.

Take care of financial, legal and long-term care planning issues early on to help reduce stress later. Involve your loved one in making decisions if at all possible, and know his or her personal wishes regarding medical directives, nursing care, and end-of-life issues. Find out the location of certain documents: insurance and bank records, Social Security cards, marriage and birth certificates, a will or trust, property deeds, and safety deposit box keys. Organization will give you peace of mind and leave you better prepared down the road.

Remember, what you do is worthwhile in more ways than one. The best way you can care for your loved one – and anyone else in your life – is to take care of yourself. At times you will likely want to do more for your loved one than is reasonable. Try to accept your limits as part of being human. Do what you can and accept that your efforts are enough.

Sources:

my.clevelandclinic.org/health/diseases/9225-caregiving-recognizing-burnout
www.aarp.org/caregiving/life-balance/info-2017/avoid-caregiver-fatigue-fd.html
www.heart.org/idc/groups/heart-public/@wcm/@hcm/documents/downloadable/ucm_300657.pdf
www.southeastsun.com/online_features/family_living/article_299bf21a-0a4e-5724-85da-d506705f130d.html
www.philly.com/philly/health/health-news/caregiver-burnout-is-real-but-not-inevitable-if-you-heed-these-warning-signs-20171124.html
dglobe.com/lifestyle/health/4448063-setting-rules-can-prevent-caregiver-burnout
www.chicagotribune.com/business/sns-201806070026–tms–kplngmpctnkm-a20180627-20180627-story.html
www.courant.com/prime/hc-fea-prime-support-alzheimers-caregivers-20180716-story.html
buffaloreflex.com/home/caregivers-can-find-different-ways-to-meet-responsibilities/article_da0f8f92-78be-11e8-95e8-470f8f3254f2.html