Caring and feeling out of control? Welcome to the club! When we’re new to caring (or been at it a while!), many of us can feel overwhelmed, confused and out of our depth at times.
A whole cast of professionals may now be in our life – and making sense of who does what, or keeping up with appointments, food diaries or medication are just some of the many things to get our head around and keep up with
Many caring situations come about with little notice – sometimes coming from a place of trauma, whether a life-changing diagnosis or an accident. Sometimes caring can creep up on us, starting small and growing to take over our life.
Often we can find ourselves caring for someone close to us because it feels like the right thing to do, or because it was assumed that we would take on the role. So caring may not be a conscious decision. One thing is certain – we won’t have been given an instruction manual on how to care for someone.
All of this, whilst juggling our own life, and coming to terms with progressive new normals as a diagnosis continues to unfold over time. Soon enough we come across situations that we just can’t fix, and knowing what to do or finding someone to help, can feel impossible.
No wonder we can feel out of control.
Typical emotional challenges when caring
Why do I feel out of my depth and overwhelmed with my feelings?
We may find that having taken on the caring role we expect to take responsibility for everything that goes with it. As well as this being overwhelming physically, sometimes the mental and emotional overwhelm is even worse.
It is very common (especially when new to caring) to try and “fix it” by getting control over a situation which we just don’t recognise or fully understand. This soon begins to feel like trying to hold back the ocean with a broom!
Beyond the day-to-day caring, coming to terms with the changes and making choices to accommodate the new and evolving situation take time. There are decisions affecting our own and our family’s life – what does the “new normal” look like? Much of it seems out of our control.
Why do I feel I am entirely responsible for the person I care for, with a need to control what happens to them?
A lot of our responses are due to a deep emotional response to the situation. We may be in shock and fear over what will happen to the person we care for – whatever their diagnosis and prognosis.
Fear often drives a need for control, and to take on more responsibility than needed, to try and prevent any further harm. Caring for someone close to us impacts on our relationship with them. We will have become used to our relationship and it’s quite an adjustment to make, when seeing how that relationship and the dynamic between us changes.
The love we may feel for that person also influences our wish to do our best for them, to try and cling on to them, when we might otherwise choose to let others take the strain sometimes. The need to control and take on too much responsibility can lead to increased pressure and resentment, as we are impacted by the intensity of the caring role.
On the other hand, it may be that we have historically had a difficult relationship with the person we are caring for – and this can lead to mixed feelings. Perhaps we feel that by caring for them we can mend some of the past difficulties; or we may not feel happy to take on the role but feel obliged to. (This may be a good point to gently remind ourselves that there is no legal obligation to be a carer).
It might be helpful to look at some caring situations which demonstrate these issues. All these are real situations with names changed for privacy.
Mavis cares for her adult son who has autism and learning difficulties. Her love for him and the fear of something happening to him means that she doesn’t trust anyone else to take care of him. She also fears what will happen as she gets older and won’t be there for him in the same way.
Joan moved in with her estranged husband when he had a stroke out of a sense of duty to care for him. He is a very demanding man, and she feels run ragged doing every little thing for him – a lot of which he could do for himself. To compensate for her difficult feelings, she takes on more responsibility than she needs to. She feels resentful of the time spent, as she can’t do things she enjoys and needs to do. Joan’s situation of caring for someone we don’t always like, is not uncommon.
Frank cares for his mother who has dementia. He is of working age but stopped work as he feels no-one else is there for her. He has siblings, but they refuse to get involved. As well as impacting on Frank’s ability to work, it has also meant his relationship with his girlfriend has broken down, as he is just not available for her. He often finds himself out of his depth with the changes his mother is going through but finds it difficult to let go of any responsibility for her.
Caring and the need to control
When we are feeling fearful, overwhelmed or under pressure, we naturally want to try and control what is happening. However, often that adds more pressure, as it becomes clear that there are things that are beyond our control.
For example, someone with dementia may experience better or worse days, or there may be triggers to certain behaviours which are not obvious – as their carer we wouldn’t be able to control this and trying to will lead to more frustration and distress for everyone.
Often letting go of control – or the need to control – can have a good outcome, because the pressure is relaxed. It also allows us to respond effectively, rather than simply react to situations.
There will be some things that perhaps don’t have to happen right now (or at all), and with practice we may feel comfortable to start asking other friends and family for help.
Carers and feelings of responsibility
As carers we often need to take responsibility for someone because they lack mental capacity - in dementia, learning disabilities and some mental health conditions for example.
However, we often take on more responsibility than we need to. In Joan’s case above, she was doing everything for her husband, when he was still capable of doing many things for himself. Her caring role improved significantly when she stopped reacting to his demands and encouraged him to do things for himself.
Taking on more responsibility than we need to, may further disable the person we care for and may not allow them the dignity of taking care of things for themselves.
Responding versus reacting
Learning to respond rather than to react is a way to begin to let go. Here is the difference:
When we react to a situation it is usually without conscious thought – a knee-jerk reaction to a demand, need, etc. It can drain our energy, as stress hormones - adrenaline and cortisol – flood our system and is often not effective.
Responding to a situation means stopping, taking a few deep breaths to steady the adrenaline, and consciously considering what to do – it is a more measured way of dealing with the demands of caring – even in emergency situations.
Allowing time to respond rather than react is more effective and gives us space – we may even choose not to respond and let go of the need to react. This takes practice!
Asking for help as a carer!
In law, if we choose to be a carer for someone, we are entitled to protection and we have carers’ rights. The most important of these rights, is the right to support with our caring role and protection from the impact of caring – this is a legal duty on Local Authorities.
The support might come through a local carers’ service. This would be the first place to go to seek help to make sense of what is going on for us and the person we care for. Navigating all the different services that are involved.
We are entitled to a Carer’s Assessment, which helps us to identify what we are doing as well as how it affects us and what we need to be able to continue caring in a sustainable, healthy way. We may be eligible for extra help to remain in employment for example, or even financial support for ourselves as a carer to access something we need.
The important thing is, despite how we might feel, we cannot be expected to meet all of someone’s care needs all the time. It’s not healthy or sustainable. If we think of caring as a role, it can be helpful to draw up a job description – this is something that a Carer’s
Assessment or someone at our local Carers’ Service can help us with. Once we see all that needs to be done, we have an opportunity to look at what we are willing and able to do, to make appropriate choices and ask for help with the care.
Three key areas of help for carers are Information, Advice and Guidance
1. Information for Carers
Information on the condition and prognosis of the person we care for
Information on Carers’ Rights and support we can get
Information about Carers’ Assessments
Information about support for carers and who does what
2. Advice for Carers
Advice on making sense of our caring role and taking care of ourselves
Advice on managing our time and prioritising tasks
Advice on how to speak up for ourselves or find an advocate
3. Guidance for Carers
Guidance on what is fixable and what is not – and how to cope
Guidance on accepting our limitations and setting boundaries
Guidance on how much responsibility to take
Simple tools to manage what we can/can’t control
1. Start off with a simple list
Identify and accept what we can and can’t control and capture this as a list. Make it as personal as possible.
Here are a few examples, shared by other carers to get us thinking:
Things we can control:
what we say (or choose not to say)
what we look at online
who we choose to spend time with
what we eat
our self-care
how we chose to respond (taking a pause or a long breath, can really help here!)
our boundaries
Things we can’t control:
the weather!
how long we’re put on-hold for
paid carers who don’t turn up
what other people say
how the person we care for responds to us
how long the Carers’ Allowance department take to respond
other people’s feelings
2. Build awareness of unacceptable expectations
Sometimes we often set ourselves unrealistic expectations - but are they really achievable? Or are we setting ourselves up for disappointment? Perhaps to overcome this, we can try challenging our own expectations. Ask ourselves - if our best friend was in this situation, would we expect them to be able to do 'all of this' - or would we be telling them to 'cut themselves some slack'? We don't often offer the same level of kindness and realism to ourselves.
3. Accept that it’s OK to ask for help
And this includes our friends and family for help too. One thing we can control is our actions and who we ask for help. Our Facebook group for unpaid carers is also another good starting point to asking questions, and connecting with other carers who also understand.
4. Prioritise what is actually important
This is ‘easier said than done’. As carers, we may find that our daily priorities consists of chasing up different people for payments, appointments, or medication. And this strips off our time with the person we care for.
Perhaps we can delegate some of these tasks to other people. Perhaps, some things can wait so we can enjoy being with the person we care for. Check out our creative Carers’ Priority Matrix tool which helps us categorise our tasks.
And finally, a word about Carer Perfection!
We can easily get caught up in the need to be the “perfect” carer. Seeking perfection is also a form of control and perfection is an illusion. Aim to be good enough. It has been proven time and again that good enough works!
This blog was written with Jill Pay. "Jill has many years of caring experience, caring for her daughter for over 20 years, who is now in residential care. Jill worked at Camden Carers for 15 years until her retirement in 2021. She now works as an independent trainer and writer, as well as enjoying more time for her art."
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