ARE YOU SUFFERING FROM CAREGIVER BURNOUT?
Is it difficult to see any hope through your tears of frustration, anxiety, worry, fear and sadness?
Are your thoughts so scattered that you have lost clarity in your caregiving role?
Are you so physically worn out that you struggle to accomplish your daily duties?
Are you feeling so exhausted that you have no energy left for your own personal satisfaction?
Are you using food, drugs or alcohol to feel better or to simply not feel?
If you answered yes to any of these questions, then it is very likely that you are feeling overwhelmed by your caregiving role. If you answered yes to several or all of these questions, you need to reach out for professional health advice, help and support.
You are not alone in your feelings as they are a result of a condition that is very real and common for caregivers.
It is commonly known and accepted as Caregiver’s Burnout and occurs when the stresses of caregiving are left unchecked, eventually leading to burnout. This condition is also referred to as Caregiver Syndrome.
INDEX OF CONTENTS
1. Physical, mental and emotional exhaustion.
Caregiver burnout is shorthand for a group of debilitating symptoms caused from being under constant strain and stress. It is usually the result of caring for a vulnerable or chronically ill person for a prolonged period of time.
Exhaustion is so severe that under extreme circumstances you are not able to perform your normal daily activities or function normally, at least temporarily.
This crippling condition is increasingly being referred to as “caregiver syndrome” by the medical community due to its characteristic combination of the signs and symptoms which lead to total physical, mental and emotional exhaustion for the carer.
A syndrome is described as a group of symptoms which consistently occur together, or as a condition characterised by a set of associated symptoms which may result in the production of white blood cells being damaged.
2. Chronic stress.
Chronic stress is stress that has been going on for a long period of time.
Stress is your body’s response to pressure. It causes an overproduction of white blood cells, which defend the body against diseases but can cause problems when produced in excess.
Many different situations or life events can cause stress.
Stress causes your body to trigger a fight or flight response and your immune system is activated when you experience something new, unexpected or threatening to your sense of self, or when you feel you have little control over your situation.
When stress is beneficial it can help you push through fear or pain to outrun an attacker, complete a marathon or provide first aid at an accident scene, for example. Your stress hormones will usually subside back to normal quickly once the stressful event is over, without any lasting effects.
However, too much stress, if not reined in can lead to being in a permanent state of fight or flight. The outcome is that you develop more severe symptoms of stress resulting in you feeling overwhelmed or unable to cope. Long term, this can negatively impact your mental health as well as your physical and emotional health.
When the stress becomes very severe it can mean the end of your caregiving role if swift and immediate intervention does not occur.
3. Neglect of your own social and health needs.
Being an informal or family carer for a loved one is a selfless act of love and is both a privilege and a challenge. It is easy to become entrenched in the caregiving role and to neglect your own physical, emotional, mental and spiritual needs.
When caregiver stress becomes so overwhelming that it results in burnout, it is a struggle to perform the everyday normal activities of caring for yourself.
It should be noted that parenting is also a caregiving role and both new and experienced parents can suffer from caregiver burnout.
Burnout is not solely suffered by carers of the sick, aged, frail or vulnerable population. Occupational burnout can be experienced by people such as health care workers, paramedics, police, veterans and rescue services as their jobs entail dealing with a lot of trauma.
If you have met both your and your patient’s basic needs of safety, food, medications, hygiene and companionship you have done well and this is a good day. It isn’t a terribly exciting day but it isn’t the worst possible day either. Be kind to yourself.
WHAT CAUSES CAREGIVER BURNOUT?
1. Underestimating the Caregiving Role.
Caregiver burnout can happen when family and informal caregivers are unaware or underestimate how much time, energy, skill and discipline is required to perform their caregiver role. They are unsuspecting as to the severity and insidious nature of caregiver burnout and have not been adequately prepared or trained to what it is or how to recognise its signs and symptoms.
This is especially significant if the role of carer has suddenly and unexpectedly been thrust upon them.
2. Not recognising the signs and symptoms of Caregiver Burnout.
Many exhausted, ill caregivers today don’t seek help because they don’t realise that they have a recognisable condition. They accept it as the normal stress that goes with caregiving and haven’t realised until they have reached breaking point that their symptoms have escalated into burnout.
Unlike professional caregivers who are trained to recognise the signs and symptoms of burnout in its early stages, informal caregivers don’t receive this level of training or education.
Professional caregivers are in the fortunate position to receive prompt support from their peers and superiors to address and manage burnout when it occurs.
Providing that they recognise they are ill, it often falls on informal caregivers to seek out support and treatment for themselves. They think that how they are feeling is just ‘par for the course’ and not a condition that needs intervention or treatment.
3. Work overload and time poor.
Not enough understanding or support from employers of caregivers who work outside the home. This causes additional anxiety, frustration and stress as you are trying to coordinate the demands of your career with the health care needs of your loved one.
Highly dependent care recipients need a lot of assistance and care and you won’t always be able to meet all of their needs every day. You must be able to prioritise their needs. If you did not complete a smaller task, such as trimming nails or giving a shave, it is not a measure of your failure but simply due to the demands on your time or energy. Let it go.
4. Lack of Support and Training.
Not only are caregivers not trained for the exacting duties and functions that caregiving encompasses but add to this a lack or shortage of volunteer or affordable physical support and you have a very stressful, despairing and isolating situation.
5. High Care Needs.
If your care recipient has a terminal illness, for example cancer or dementia, they are more dependent on you due to the severity of their disease.
If your patient has combative behaviours, you become hypervigilant to what might trigger a certain behaviour thereby increasing your stress level.
6. Unpredictable events.
Caregiving is an emotional roller coaster even if the practical side of caring is currently still manageable.
You can schedule, diarize and prioritise but the unexpected scraped knee, tantrum or unplanned trip to the doctor will intrude on having that extra cup of tea or soak in the bath. Take a deep breath.
If your care receiver is a spouse, parent, sibling or someone else close to you, your relationship has changed. Your life has changed. Your own desires, wants and needs have been banished to the back of your mind.
Their needs have become your goals for the day.
Their emotions have become your emotions.
You cry with them. You laugh with them. You worry with them.
You have morphed into the character of the person you are caring for.
You need to pause, reflect, reframe and reign in.
8. Increased care demands.
As your care receiver’s disease progresses and their health needs increase they will require more and more of your time resulting in less and less time for yourself.
You need more hours in your day. You bargain for more time by giving up more of your needs. You still don’t have enough time so you trade some of your sleep time.
You are now walking a fine line between the healthy stress that keeps you focused on your role and severe stress that will literally knock you off your feet. Review and streamline your schedule. Cut and paste where you can.
You are human not super human. Praise yourself for what you do well. Forgive yourself for what you think you could have done better.
WHAT ARE THE RISK FACTORS FOR CAREGIVER BURNOUT?
1. Being a perfectionist or overachiever.
Ironically, it is the sensitive, responsible and kind hearted people who take a deep satisfaction in doing the right thing by their loved ones who are at the greatest risk of developing caregiver burnout. This is because they also tend to be overachievers or perfectionists in providing a happy, safe, loving and supportive environment for their care receiver at the exclusion of taking care of their own health.
2. Being an older caregiver.
There are many contributing risk factors that fuel and inflame caregiver burnout. Older carers who are over the age of 60 years can be a red flag for caregiver syndrome. They are more vulnerable to stress due to their own emerging illnesses or physical limitations compared to their younger peers.
Women are also more vulnerable to anxiety and depression than men and men are usually harder to care for. Maybe a correlation or assumption can be made here!
3. Other risk factors for caregiver burnout:
- Lack of choice in being a caregiver.
- Living with the person you are caring for can cause boundaries to be crossed and privacy to be lost.
- Social isolation can cause loneliness. Friends and socialising are important for comfort and support.
- If you already have a diagnosis of depression, the expectations of caregiving can exacerbate your depression.
- You have not developed skills of resilience.
- Guilt or worry that you aren’t doing enough or well enough.
- Financial difficulties that prohibit you from hiring extra help so that you can have a break or to lighten your workload.
- The long hours that come with caregiving.
- Lack of work-life balance.
- You have your own health issues.
- Lack of training to acquire coping and problem solving strategies.
It is not possible to eliminate all the risk factors for caregiver burnout. The very nature of caregiving is a stressful role. Address the risk factors that you can and acknowledge the ones that you can’t change without feeling guilty. Speak out and reach out for help.
WHAT ARE THE SIGNS AND SYMPTOMS OF CAREGIVER
The severity and collection of symptoms that you are suffering from will depend on how quickly you recognise that you are not coping.
Early recognition of the signs of stress and appropriate intervention will make managing and healing much easier and may prevent the extreme condition of 'burnout'.
If, however, you have fought a long battle before raising the white flag you will have manifested more symptoms and they will be more entrenched resulting in higher stress levels and depression and a slower recovery time.
1. Physical Symptoms of Caregiver Stress.
- Body aches and pains
- Frequent headaches
- Muscle tension
- Weakened immune system
- Feeling tired and run down
- Shallow, rapid breathing. Sighing is a sign that you have unconsciously held your breath.
- Changes in appetite or weight
- Abusing alcohol or drugs, including prescription medications
2. Behavioural Symptoms of Caregiver Stress
- Easily agitated, irritated or angry
- Constantly feeling worried and frustrated
- Difficulty in relaxing
- Difficulty concentrating
- Sleeping too much or too little, disturbed sleep
- Lack of motivation
- Lack of interest in activities you enjoyed
- A tendency to get lost in thought (rumination)
- Isolating from friends and family
- Neglecting responsibilities
3. Emotional Symptoms of Caregiver Stress
- Feeling hopeless
- Feeling overwhelmed and a loss of control over your life
- Denial about loved one’s condition
- Grief caused by your loved one’s deterioration
- Feeling sad and easily brought to tears
- Low self-esteem and self-worth
- Becoming angry or argumentative
Early intervention is key to preventing severe caregiver stress.
WHY IS CAREGIVER BURNOUT A PROBLEM?
Caregiver burnout negatively impacts relationships with your family and friends due to you feeling too exhausted and unmotivated to maintain and nurture these relationships. You also could be harbouring feelings of resentment and anger if you feel you are not being supported enough.
Depending on the severity of your stress you may not be functioning optimally, compassionately or cheerfully and this will have an adverse effect on your care receiver’s moods and behaviours.
They are dependent on you to be treated with compassion and respect and to feel happy, safe, reassured and comfortable.
2. It affects your care recipient.
If your physical, mental and emotional health is suffering it only stands to reason that it will have a flow on effect on the quality of care you are providing.
Being overly tired could lead to impatience and frustration which may cause you to become angry or irritable with your care receiver.
It becomes a real concern if you can no longer provide focused and responsible care to your care recipient. For example you may forget to give a medication or mix up medications.
If left untreated, caregiver stress can lead to ‘compassion fatigue’ causing you to withdraw from your caregiver responsibilities. This withdrawal may lead to premature admission into residential aged care for your loved one
3. It affects your own physical health.
For you, the carer, caregiver burnout can literally be a deadly problem due to prolonged periods of elevated stress hormones circulating in your body which can result in serious physical health issues such as high blood pressure, heart disease, diabetes, cancer and much more. This puts you at an increased risk of death.
As stress compromises your immune system you are also at risk of frequent illnesses such as infections, colds and flus. Your impaired immune system can make it harder and slower to recover from these less serious illnesses.
4. It affects your emotional and psychological health.
There are connections between stress and mental health conditions including depression, anxiety, psychosis and post-traumatic stress disorder (PTSD).
Recent studies have shown that long-term stress can change the structure of the brain, especially in areas supporting learning, memory and regulating emotions. It can affect both nerve cells (grey matter) and the connections between them (white matter). It is possible these changes, along with other factors, can increase the likelihood of developing mental illness.
5. It ages your appearance.
Stress is also aging to your appearance giving you more wrinkles, skin breakouts, hair loss and decreased muscle strength. It can also cause weight gain or weight loss.
6. It has long lasting health issues.
Even after your caregiving role has ended you can still be prone to developing diseases and premature death due to the chemical responses from stress causing long lasting effects on your immune system. If you are middle-age or older you are more vulnerable to these immune alterations.
7. Recovery can take a long time.
Now that you know how serious a health problem Caregiver burnout is it should not be a surprise to learn that recovery can take weeks, months or years.
It will depend on the severity of your symptoms, what symptoms you are experiencing, how long you have been suffering as well as the support and treatment you receive as to how long it will take for you to recover.
Each person is different. What works for one may not work for someone else. Some individuals are naturally more resilient so they will be more committed in their approach to a recovery plan so they may receive positive outcomes in just a few weeks.
Other people are not so blessed and may need professional help over a long period of time.
Caregivers are the second silent patient. It is not uncommon for caregivers to die before the person they are caring for.
HOW TO PREVENT CAREGIVER BURNOUT.
1. Be attentive to self-care.
To stave off caregiver burnout you need to become self-aware and attentive to your own self-care. This involves education, dedication, persistence and ingenuity to balance your caring role with your own self-care needs so as to avoid being swallowed up by this distressing and debilitating condition.
2. Know your resilience factor.
If you are able to act promptly at the first signs of distress you will be successful in preventing yourself from spiraling into anxiety, despair and depression.
Some people are intrinsically more resilient in stressful situations and are able to bounce back quickly after difficulties. They have learned from past experiences and have developed better coping mechanisms. But even resilient people will experience some level of caregiver stress.
Others feel helpless to take action to avoid or correct a difficult situation. This can be due to a variety of reasons, including organic, but it is not a weakness or failure. It just means that you might have to be at the top of your game and recognise the signs and symptoms of caregiver stress as soon as they occur.
Look back into your past for clues on how you coped with other stressful life situations such as weddings, exams, a new job or a relationship breakup. Did you take flight or did you face the fight?
Use those past experiences as a guide to how you coped. Does this give you an idea of your coping skills or stress tolerance? You need to know this about yourself so as to be better prepared to deal with the stressors that come with caregiving.
These are important insights about yourself because they prepare you for what lies ahead and being forewarned is being forearmed.
3. Be self-reliant and seek out resources to educate and prepare yourself against caregiver stress and burnout.
No one can predict how far we will need to stretch ourselves as the caregiving role is very diverse and caregivers are individuals with varying coping limits. It isn’t a ‘one size fits all’ situation so prevention, symptoms and treatments will be different for each caregiver.
Whilst there are many resources available that have suggestions on how to cope, where to go to get help, and the signs and symptoms of caregiver burnout I feel there isn’t enough practical hands-on help addressing how to prevent or decrease the symptoms of caregiver’s syndrome.
Unless you, the caregiver, is financially well off or live in an area that has adequate government or privately funded agencies and services appropriate for your situation, regrettably you will find that you have to rely mostly on yourself for developing and implementing coping mechanisms essential to your survival as a caregiver.
4. Strategies to help caregivers to prevent or decrease burnout.
- Make sure that every day you eat a healthy diet, do some exercise, take time out for yourself and get a good night’s sleep.
- Educate and familiarise yourself with the signs and symptoms of caregiver burnout so that you can take action to remedy them as they arise.
- Investigate what help is available in your local area and make an appointment to discuss how they can support you.
- Educate yourself about your care receiver’s condition so that you won’t receive any unexpected shocks or surprises that their condition or personality may present over time. I can't emphasise this important factor enough. Question, question and question.
Despite the many dementia workshops I attended I was not prepared for the sudden and unexpected turn of events that my partner's dementia took.
Later on when I asked the question why we were not told of the possibility of experiencing our particular situation, I was told that if we knew in advance, it would have 'scared the pants off of us'.
I don't agree with this approach as I was suddenly separated from my long-term partner by way of him being admitted to residential care following his traumatic 18 week hospital stay.
I lost my home and was displaced. My home became motels and airbnb's and I couched surfed where I could. I am still being treated for PTSD and resultant health issues nearly two years after the event.
My severe stress came from this single event which may have been prevented if I was warned of this possibility as I would have been better prepared.
Prior to this event, I had accepted my partner's dementia diagnosis and that both of our lives as we knew it would never be the same again. I had found ways to manage and settle into my caregiving role so that my partner was living well with his dementia, but due to not being fully enlightened I feel that we were both robbed of time together.Visit my post "Introducing Coverley" to know more about our story.
- Set realistic goals and expectations. Accept that you don't have professional training.
- Practice mindfulness to reduce stress and anxiety.
- Develop routines and use a diary or journal to schedule in time for hobbies, socialising, napping, exercising or anything that is pleasurable for you.
- Choose some self-care practices to incorporate into your day. Start small and choose something easy to perform and if you consciously repeat it often enough it will soon become a habit and part of your daily routine.
- Learn how to strengthen your resilience to get you through difficult times by reframing the situation, leaning on your social network, cultivating positive thinking, laughing more and being optimistic.
- Commit to Writing Therapy. It works! There are no rules: just sit down and write. It is an activity that brings pleasure and takes your mind away from your problems which always has a positive impact on mental health. Writing or journaling about what disturbs/hurts you will help you to process and understand it, and after that to deal with it by taking considered action.
- Make a regular commitment to participate in a Virtual Happy Hour to maintain connections with friends and family via Skype, Zoom, Chat, Facetime etc. This could be once a week. Of course, it could be whenever you need a dose of laughter or encouragement.
- Join a carer's support social group in your area.
- Mindfully take slow and deep breaths often. If you do nothing else, do this one thing. It takes no effort and only requires 30 seconds for 5 breaths. It is cleansing. It is calming and peaceful. It replenishes energy and promotes clarity. Start with 5 deep breaths and if you do it every hour it will soon be a habit that you won’t want to break. Don’t tackle this too ambitiously or you might get light headed.
5. Involvement of GPs.
Caregiver syndrome is not widely recognised by the medical profession so physicians are not always certain how to approach the issues of long term caregiving. Addressing the issue early could alert caregivers to the potentially harmful health effects that they could encounter.
For example, physicians could get involved at the point of diagnosing a patient with a condition that will lead to that person needing constant care and help. The identified caregiver should also be included as the second patient and their emotional and physical health should be evaluated.
There needs to be more involvement with caregivers by GPs and Geriatricians in making carers aware of the seriousness of potential caregiver burnout. Physicians need to be more proactive by making it a priority in suggesting strategies or recommending resources to help prevent caregivers from becoming unduly stressed.
If GPs were to screen their patient’s caregiver for potential or current stress and depression, early diagnosis and treatment could be implemented to meet the health needs of the carer.
Treatment could be given by the caregiver’s own GP, but that initial observation is the first step for intervention and it is often the care receiver’s GP that has first contact with the caregiver.
6. Strengthen and expand the caregiver support system.
- Provision and awareness of regular and accessible training courses for caregivers to develop active coping skills in stress management, relaxation training, coping effectiveness training and mindfulness-based stress reduction would help empower confidence in carers.
- Availability and delivery of on-line courses would encourage rural, remote and busy carers to participate. Internet access needs to reliable and free.
- Respite services need to be accessible on-demand instead of having to book weeks or months in advance.
- Hospitalisation for care recipients to address the shortage of respite care is unacceptable as it often leads to delirium followed by a deterioration in the patient’s condition, especially in the case of dementia or elderly patients.
- The caregiver support system needs more financial support so that they can provide more physical and affordable sources of help for caregiver tasks.
If more resources were available to educate informal and family carers as to the seriousness of the health effects of caregiver’s stress it may significantly decrease, if not prevent, the occurrence of this syndrome.
7. Government advertising campaigns.
There have been many campaigns and millions of dollars spent over the years educating and advertising the harmful effects of tobacco smoking, drinking, diabetes, obesity, drug use and mental health.
There are 2.8 million informal carers in Australia caring for the sick, aged and disabled so more strong and targeted campaigns to guide and support caregivers would help caregivers to be aware of the mental, emotional and physical health challenges that they are susceptible to.
Caregiving is viewed largely as a burden by our society instead of being viewed as more of a societal expectation. If governments, organisations, and individuals were willing to offer more support, fewer caregivers would suffer in isolation.
HOW TO RECOVER FROM CAREGIVER BURN-OUT
The first step to overcoming caregiver burnout is accepting that your situation needs to change.
Caregiving is enshrouded in nobility and portrayed as rewarding and a privilege. I whole heartedly agree with this sentiment but it can make us feel guilty when we need to put up the white flag.
You may have had self-doubts about your abilities for caregiving but the real reason is that you did not realise that you were suffering from a recognisable condition.
You are doing yourself and your care recipient a favour when you seek help as you need to be healthy yourself to be able to care for someone else.
2. Recovery from caregiver burnout is a slow journey.
If your caregiver burnout has sunk to the depths of depression and despair it will take time and space to recover so don’t rush the healing process.
If left untreated it will only get worse if you don’t address the underlying causes.
You first need to identify why you've experienced burnout. Some of your symptoms may be due to obvious reasons but it may take introspection to uncover why you are experiencing other symptoms.
You need to do this so that you can choose the right strategies and course of action for you and your care receiver.
3. Strategies to recover from caregiver burnout.
There are various recovery strategies to help decrease the severity of caregiver burnout. It will take trial and error to work out which strategies will or won’t work for you.
Balance strategies and self-care practices that feel comfortable and achievable for you. If something isn't working, don't be afraid to try something new. Results will take time so be patient with yourself.
Some recovery strategies won’t be easy due to having to make some tough decisions that may affect your loved ones for a period of time. If left untreated, caregiver burnout can lead to hospitalisation for the carer or the care receiver.
Make Lifestyle Changes
- Connect with caregiver support agencies to see what is available in the way of respite care, home help, financial assistance or counselling.
- It may be hard to imagine leaving your loved one in someone else's care, but taking a break can be one of the best things you can do for yourself — as well as the person you're caring for. Consider in-home respite, adult day care centres or short-term nursing homes that offer respite care so that you get time to rest and heal.
- Make sure you are eating nutritious meals. Enquire about services that supply and deliver meals.
- Practice positive thinking - use positive affirmations, quotes, mantras. Think of something positive before you get out of bed each morning.
- Relaxation techniques such as music therapy, writing therapy and breathing practices.
- Implement self-care practices such as meditation, gentle exercise or some time spent in nature.
- Set boundaries and say ‘no’ to any new responsibilities or commitments while you're recovering from burnout.
- Create a schedule and try to reduce your number of daily obligations.
- Reassess and change your expectations of yourself. Be kind to yourself and don’t demand perfection from yourself.
See your GP
Your GP may prescribe antidepressants or anti-anxiety medication for a short time to help with the symptoms of depression or anxiety.
If your stress is causing insomnia, you may be prescribed a sleep aid. Disruptions in sleep can worsen stress and anxiety, which only worsen your insomnia. Sleep aids can help to break the sleeplessness cycle and reduce your stress.
Counselling, psychology or psychiatric sessions can help you with stress management. You will learn skills to process your thoughts and create solutions to alleviate your stress and anxiety.
Therapeutic self-care practices contribute greatly to recovery and prevention but psychological therapy is the game changer for mental and emotional health.
Your GP can refer you to someone of your choosing or recommend someone for you. Ask your GP if you are eligible for subsidised or free treatment on a Health Care Plan.
4. How Long Does it Take to Recover from Caregiver Burnout?
Recovery times vary for each individual and is dependent on the severity of the illness, what help is available and the personality of the person. It can take weeks to years.
If we have been standing strong through tough storms for too long, sometimes it is the lightest feather that finally knocks us over. Be as compassionate with yourself as you are with your loved one.
For medical advice please seek professional help from a qualified and licensed health care practitioner.