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Falling ill with a debilitating disease means you are likely to need ongoing support and care, often around the clock. Caregivers make up a crucial part of the health system that mainly goes unrecognized and unrewarded by the state.
Did you know that in the last year there have been roughly 43.5 million unpaid caregivers?
That is an insane number of people who are doing some very difficult work! So how do we care for the people who care for us? I will show you how.
Because most caregivers are looking after someone very close to them – a family member or close friend, they will pour all the time and energy into helping them, forfeiting their own personal needs. This can easily lead to caregiver burnout.
What is caregiver burnout?
When a caregiver overstretched their physical and/or emotional commitment to the person they are caring for they can reach a breaking point. We call this burnout or caregiver stress syndrome.
Medical staff are detached from the patient but are also trained to know when to step away, so burnout is less likely to happen. Non-professional carers typically get little support. Some state funding may exist, but it rarely covers what is actually needed. Emotional support and training are insufficient too.
Caring is typically a 24/7 role. There is no time out, no weekend, no clocking off at 5pm. This relentlessness is very draining and taxing and leaves no room for personal recuperation.
Burnout and stress damages personal well-being, resulting in short- and long-term harm. As well as hindering effective care, the caregiver can start to display negative emotions to others in their lives too. At the point of exhaustion, the caregiver is no longer able to be there for the patient and requires support themselves.
Practicing self care will help prevent burnout. I’m posting an article soon on Ideas for self care in a busy world – How to look after yourself.
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What are the signs of caregiver burnout?
Someone suffering from burnout is likely to suffer from some, or possibly all, of the following symptoms:
- Emotional and physical fatigue.
- Feelings of desperation, loneliness, and being stuck in a situation you can’t get out of.
- Irritability, being easily emotional, or the opposite, feeling detached, with little emotion at all.
- Anxiety and/or depression.
- A weaker immune system and the accompanying likelihood of more frequent colds and illnesses.
- Losing your empathy for the person you’re caring for and/or feeling resentful towards them.
- Lacking patience and picking fights with your patient and others.
- No longer taking part in or even wanting to enjoy activities you once cherished.
- Physical symptoms, such as increased headaches, ulcers, and stomach aches.
- Having the feeling that everything you do is about the patient, and that you no longer have a life of your own.
- Losing contact with friends and family. Not having enough time to be there for your own family.
- Feel anxious and dread from the moment you wake.
- Fearing you are a burden and not seeking help.
- Unhealthy coping behaviors, such as smoking, eating unhealthy food, and drinking.
- Having feelings of self-harm or harm to the person you are caring for.
- Insomnia, poor sleep quality, and/or using sleep medication as a crutch.
- Losing the desire to eat.
- Losing or gaining weight.
Causes of caregiver burnout
John Hopkins Medicine clearly lays out the causes of caregiver burnout, summarised here below.
- Unrealistic expectations.
The caregiver often has unrealistic expectations as to what they should be doing and how much of their time should be given to caring. Any downtime is seen as wasteful, time that could be given to the patient.
- Role confusion.
As carers are often close family members or friends to the patient, it can become confusing to take the persona of carer one minute and the role of husband/wife/mother/sister/etc a little later.
You are likely to have to perform tasks that make both you and the person you are caring for feel vulnerable and this adds to muddying the emotions.
- Financial concerns.
Specific medicines or equipment can become quite expensive, draining your finances. Added to that, the caregiver may have to stop working to be with the patient full time, further adding to the stressful situation.
- Anxiety and fear.
Worrying about the person you love, how you will get by financially, feeling like things are out of your control can make a situation very stressful and you may start suffering from anxiety.
Without other distractions (your hobbies, time to relax and reflect, being near other family and friends) may cause you to linger on negative thoughts more often, which in turn will affect your mood.
- Lack of control.
When all your time is given to caring for another and you feel incredible guilt for doing anything other than look after them you are likely to start feeling like your world is spiraling out of control.
Degenerative diseases, where there are no cures leave you questioning why and feeling like things are futile.
Guilt can manifest from feeling like you are neglecting your own family. It can come from feeling like you are not spending enough time with the person you are caring for. You may know that you are starting to suffer from burnout but feel guilty about focusing on yourself for a change. You might be doing everything in your power but it still is not enough to halt the disease, so you feel like you are letting people down.
- Social isolation.
You focus on the person you are caring for so much that other aspects of your life fall by the wayside. You don’t socialize anymore, and don’t even have the energy to do so when you have the time. Rather than feel uncomfortable in such situations, with the added guilt of not being there for the person you are caring for, you choose to step away from the outside world instead.
A combination of the above slowly wears a person down. If you get burnout it can be a huge confidence blow, making recovery harder to deal with.
Caregiver burnout statistics
To give you some perspective as to the number of people acting as caregivers in the USA, read some of these statistics from the Family Caregiver Alliance below:
- In the last year there have been roughly 43.5 million unpaid caregivers. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
- 82% of these have been caring for one other adult, 15% have responsibility for two adults, and 3% for three or more adults. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
- At $470 billion in 2013, the value of unpaid caregiving exceeded the value of paid home care and total Medicaid spending in the same year and nearly matched the value of the sales of the world’s largest company, Wal-Mart ($477 billion). [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]
- Females make up ¾ of all caregivers. [Institute on Aging. (2016). Read How IOA Views Aging in America.]
- Approximately 44.6 hours of a family caregiver’s week is spent looking after a spouse or partner in need.
How to prevent caregiver burnout
If you are a caregiver to someone close to you it is likely that you get into the dilemma situation where you have to choose between yourself and the person you are caring for. As you tire your emotional and physical reserves deplete and will come to an end. It is important to understand that if you are burnt out you will no longer be able to help your loved one.
You must learn to be able to take a step back. To say no. To ask others to take the lead for a brief time, while you recuperate and get your energy back. Once you accept that you cannot do it all and be there for the person at all times you feel less guilty and can take a more structured approach to the care. By caring for your own needs you will be a stronger person for the person you are caring for too.
Ensure that you are getting all the support you can from charities, medical bodies, the state and your community to help reduce the burden you are carrying.
If you are struggling financially, consider raising funds through a crowd-sourcing campaign. I can help you navigate how to set this up. Start by reading this article I wrote on How to Set Up a Successful GoFundMe Campaign. If you have any questions, please get in touch and my team and I will do all we can to help.
Another consideration is to use technology to help reduce the number of tasks you might need to perform. Read a little more about the gadgets in my home and how they help me with my day-to-day tasks.
Self care is hugely important in being able to deal with the demanding reality of being a (near) full time caregiver. In a few days, I will launch a series of articles on self care in the coming weeks, beginning with: What is self-care and why should you care? It lays out what this is in detail. In a nutshell, self care ideas help you take a holistic approach to your wellbeing. They ensure that your physical, emotional, mental, spiritual and social needs are being met.
If you are suffering from burnout self care is a good right step to help your recovery.
Caring for another person is an admirable act. Carers selflessly give their time and emotional support to improve the life of someone else. Unfortunately, in doing so they forget to watch out for themselves. Burnout is common and causes harm to the caregiver, as well as taking them out of action for a while, therefore affecting the person they were caring for too. Ensuring burnout does not happen and practicing self care is a reliable way to better manage such situations.
Now, tell me below, how do YOU prevent caregiver burnout?