Many of us have heard the term “caregiver burnout” – a term that refers to a state of physical, emotional, and mental exhaustion. A condition in which we become wholly depleted by our caring role.
Although we may accept the trials and tribulations of caring for our loved ones, many of us will deny the possibility of burnout. However, it’s important to recognise that this denial can often allow health and emotional difficulties to creep in without us even noticing.
In automatic pilot mode, we often overlook our own needs, not realising the stress we are under. And so, we can end up running on empty until it is too late, and stress has taken its toll on our health and well-being. Stress can arise if things are not going well because we often feel powerless to change things. However, this need not be the case.
In this series of articles on self-care for family carers, we touch on many areas that can help reduce feelings of stress and hence burnout, such as getting a good night’s sleep, eating correctly, practising meditation, mindfulness, and yoga. This article considers an often-overlooked risk factor for burnout in carers: feelings of lack of control.
First, we look at burnout and why taking control can help. We then consider steps to become more capable and empowered, helping to reduce stress, supporting ourselves, and our loved ones.
What is Caregiver Burnout?
Caregiver burden is a term that describes the cumulative effects of the physical, emotional, social, and financial impact of providing care at home for a family member. Carers of people with dementia experience more stress than other conditions. Over the past few decades, research has shown that certain factors increase a person’s caregiver challenges, including social isolation, financial anxiety, spending more hours providing care, and depression. Feeling as if we have no control is now recognised as a critical factor in building feelings of stress, frustration, and helplessness in carers.
Why is control important and yet underestimated?
Many carers at home start with purpose and conviction to help those in their care. They strongly believe in what they do and are fully committed to it. They want to keep family members at home for as long as possible, and they start by putting in place the necessary steps to support them. Researchers at the University of Stirling in Scotland describe this activity as “scaffolding”, whereby family members go to great lengths to support their loved ones to continue to live well at home for as long as possible.
However, with time, the trials and tribulations of everyday life can begin to take their toll. Other life events creep in. We have family commitments. We end up with a “to-do list” that doesn’t even bear thinking about. Formal care support we have brought to help us just isn’t working as we had hoped. Things just aren’t going according to plan. We feel out of control without the resources or skills to help.
Research shows that feeling powerless can have a detrimental effect on our well-being and adversely affect how we respond to challenges. Feeling as if nothing is within our control can lead to enormous stress. Often, this can be further augmented by financial constraints, impacting our ability to take care of our loved ones adequately and not having the time to take care of ourselves.
The Problems We Face
Although our intentions are honourable, often difficulties begin to mount, and we can be left feeling lost and incapable of the task at hand. Some of the problems that can arise are:
- We end up feeling wholly inadequate and incapable of facing the journey ahead.
- We depend on others for help and support, and nothing is within our control.
- We are still trying to deal with the new diagnosis in our family and are frightened for the future.
- We depend wholly on formal care, and it isn’t working well.
- We are in danger of giving up or burning o
So how do we overcome this and become empowered?
Being empowered is having the knowledge, confidence, means, or ability to do things or make decisions. As a result of taking control, we transform from being overwhelmed to capable and purposefully overcoming everyday challenges. Every family living at home with dementia is different. Most importantly, and in all cases, by taking control, we understand what works best for ourselves and our family at home.
As with any problem in life, it’s best to face it straight on. Easier said than done, I hear you say! However, recognising the maze we are in is the first step in moving forward positively. We can then make an active, conscious decision to take control of the situation, set goals, and put achievable steps to change things.
Some steps you may want to consider include:
- Develop a Positive Mindset
Developing a positive mindset is critical in moving forward. A positive mindset (or an optimistic attitude) is the practice of focusing on the good in any given situation. We can build a positive outlook and outcome by focusing on our strengths and abilities. This will make it easier for us to have the confidence to take control of dementia care routines in our own house. We can make a concerted effort to reduce complete dependency on formal care and empower ourselves by building expertise as the primary family carer.
- Become Knowledgeable
By becoming more informed, we gain the inspiration to build the confidence, knowledge, and resources needed. We acknowledge any possible weaknesses and take steps to overcome these, whether that means learning more about the condition we are dealing with, bringing on board the help of other family members, taking respite, and putting in place practical adaptations at home to lighten the load. We emerge from our maze to have a clear path of what we, as family members, have to do to be the champions of dementia care in our own homes. Accept support from family, friends, and other carers. This can be carer support groups or networking with other carers online or in person. Link up with like-minded people who understand each other. Learn from others. Give and take advice.
- Set Reasonable Goals
Small, achievable, actionable steps are the way forward. If it’s learning new information, there are many resources out there. If you need help, identify who can help, and don’t be afraid to ask for support. Tick off each goal, no matter how small, as you move forward. Pay attention to what you can do and not what you can’t. Starting to care for a family member with dementia can be daunting. Everyone with dementia is unique. Our family situations are also unique. No blueprint will correlate precisely to your own individual situation. Accept that we may not do everything ourselves and accept help and support when needed. It’s a case of building one step at a time.
- Focus on Positive Self Talk
Recognise your worth. Applaud successes throughout your day, no matter how small. Find ways to acknowledge and reward yourself. Remind yourself of how much you are doing and the importance of your role. If you need something more concrete, sit down and mull over all the ways your caregiving is making a difference. Recognise the skills you are building. Recognise your expertise.
- Build a Reliable Team of Support
You will come into contact with many people as a carer at home. Many will make up your support team. Talk together. Give your views and seek the views of others within your team. Share information. Help each other understand what works best in your home and implement it.
- Make Use of Available Resources
There’s a lot of help out there. Don’t be afraid to take advantage of it. Many national and international charitable organisations also have online resources offering advice and support. If you require one-to-one support, please get in touch with me.
Thank you for reading. Please like, share, and comment if this article is helpful. Please also check out our other articles on self-care for family carers and therapeutic interventions for people with dementia.