ALS Caregiver Burnout

Providing care for someone can be very challenging but many people do it with little or no thought for their own well-being.

There are thousands and thousands of unsung heroes across the world who take on the mantel of improving the quality of life for loved ones who have conditions including cancer, heart disease, Alzheimer’s and ALS.

Caregivers can manage to provide a lot of support for those with physical as well as mental health problems. Being positive and providing care, however, comes with plenty of challenges.

Here we take a closer look at the prospect of caregiver burnout, what causes it and how to avoid it if you are currently providing care.

What is Caregiver Burnout?

Caregiver burnout is more common than many may think. It is often described as a change in attitude and temperament as someone may become unable to cope with their caregiving role.

A caregiver might feel so overwhelmed they even start to neglect the care they give and may even seem unconcerned with the health of the person they are supposed to be helping.

With burnout, caregivers often begin to feel anxious. They could start to become depressed, especially if there seems to be no support or alleviation of the pressures they are under.

Causes of Caregiver Burnout

Most caregivers start out with a clear sense of duty and with the intention of doing the right thing for the individual they are providing care for. It may be a voluntary decision to care for someone, others do it because they have no other choice.

A caregiver might not understand the demands on their mental and physical health and that this can be quite draining over time.

Causes of burnout include:

• Being thrown into a sudden caregiving role that wasn’t expected and one which the individual isn’t prepared for.
• Not understanding the implications and reality of the caregiving role. For instance, many believe they can have a positive influence on someone’s health. Whilst this may be the case, in a lot of instances the condition of the individual being cared for may continue to deteriorate, especially if they have been diagnosed with a progressive disease such as ALS.
• There is sometimes a sense of loss of control that builds up over time and causes caregiver burnout. This might be because of lack of money, resources or just the support to give proper care or a combination of all three.

Many caregivers put unreasonable demands on themselves. Shouldering that kind of responsibility can gradually weaken their spirit and even affect mental and physical health.

Caregiver Burnout Symptoms

Many of the symptoms of caregiver burnout are shared with mental health conditions such as anxiety or depression. They often develop gradually over time so that an individual barely notices something is wrong.

Symptoms may include:

• Disrupted sleep such as insomnia with caregivers feeling they are never properly rested.
• The use of drugs or alcohol to cope with everyday life.
• Poor eating habits that may cause weight loss or gain.
• Impatience, especially when dealing with a care issue.
• Overreacting in general, in response to everyday hurdles and little accidents or friends and family who criticize.
• Feelings of hopelessness and the sense that the individual is alone.

Burnout tends to occur in three distinct stages. The caregiver will first feel frustration, especially if the person being cared for is deteriorating despite the help they are being given.

The next stage involves isolation, where the caregiver works so hard to provide their care that it subsumes everything else and cuts them off from the rest of the world.

Finally, the caregiver feels despair. They have a sense that there is no way out and they are helpless. They will start to neglect both themselves and the recipient of their care.

Preventing Caregiver Burnout

Caregiver burnout can happen to anyone. The caregiver may start off with the best of intentions, but time and lack of support will often erode their sense of self-worth and their effectiveness as a caregiver.

It’s important to put in certain safeguards before becoming a caregiver:

• It’s vital to have someone to confide in from the start, a person you are able to talk openly and frankly with. That may be a friend or family member. It can even be someone from a support group associated with the condition you are caring for.
• Set realistic goals and understand the condition. If someone has ALS, for example, understanding more about the disease and its progression will prepare you for what comes next. It can also help you set strong goals that you can achieve.
• Take care yourself and have some ‘me time’. That may be difficult depending on your personal situation but stepping back and having a rest from giving care is vital. Respite care services, are there to help give individuals caring a break and you should take advantage of them.
• Understand that you are only human and negative feelings are not uncommon when caring for someone. Don’t bottle these feelings up but talk to someone about how you are feeling.
• Maintain a healthy lifestyle when it comes to food, drink and exercise.

Caregiver Burnout Recap

Caregiver burnout happens when an individual is no longer able to cope with their role. Understanding what that role is and managing expectations whilst maintaining a support network can all be integral to help prevent issues from arising.