When caring changes

Thinking about when caring changes

One of the most emotional parts of the caring journey is when your caring role changes. Many carers think about these changes at the start of caring when someone falls ill or has an accident. Or you may consider caring changes when the person you care for recovers, needs more support than you can provide or when they pass away.

However, caring roles are continuously evolving throughout the journey. There are times when high emotion is involved such as when different diagnoses are given, when the person you care for has to give up something that they could previously do, or when you have to give up something. In each instance, you may experience strong feelings of anger, regret and unfairness for yourself and the person you care for.

 

“I was so angry when my husband was told he could no longer drive. [It] meant that I had to do all the practical things and left even less time for me” (anon carer)

Preparing for change

Caring is unpredictable. Therefore, preparing for change is not something that can be simply worked out on a schedule. You can't stop your emotions or choose which emotions you feel at different points. 

“A few days after being told [about the person’s illness], I yelled at them for not putting their cup on a coaster. I felt terrible for days. I was just so angry they would be leaving me” (anon carer)

Your experience will be unique. You may find you experience strong emotions when caring changes. It's important to reach out for support and discuss how you're feeling. 

Many carers speak about being completely in the moment when something changes and not feeling any negative emotions at the time. Their thoughts are with the person they are with and doing everything in their power to provide support for them.

It is often later, anywhere between hours to weeks, that the flood of emotions affects them.

There is nothing you can do to stop this, but it is not unusual either. It doesn't mean you care any more or any less than someone else. Everyone processes information differently and has a different response to difficult information.

Knowing that you are likely to experience a range of emotions as caring changes means it can be helpful to build support networks so you can share your feelings in a safe place. 

Some carers share with a close family member or friend. Others seek professional support by talking to counsellors or therapists and many join support groups on social media or talk to other carers via the Carers UK forum.

Whatever this outlet is, knowing you have a place where you can experience emotions in a safe environment can be incredibly supportive and even allow you to process your emotions more quickly.

 

Forgiving yourself

“I went on Amazon and loaded up the credit card on stuff for myself. It felt selfish.” (anon carer)

 

It's important to forgive yourself if you experience strong and negative emotions. Several carers spoke to us confidentially about actions they regretted at different stages of their caring journey changing. One carer admitted to becoming ‘obsessive’ about her family doing the washing up properly and getting ‘excessively angry at anyone who made the smallest error’.

Another spoke about cutting off contact with others after their child was confirmed to be autistic. They didn't know how to talk about the subject with anyone and the ‘complete sadness’ prevented her from ‘knowing what to say, how to say it, and how to get sympathy from them’. This made everyone ‘…so angry at me. They thought I was so selfish’.

All the carers asked had their own stories. They all talked about them as acts of rebellion or self-preservation. Little ways that they could find to emote the negative feelings they had or protect themselves from the overwhelming feelings they were experiencing.

Everyone experiences difficult emotions. When your caring role changes this becomes more likely. It is okay to forgive yourself.

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When a caring change becomes too difficult

Sadly, there are times when a caring role changes and becomes too difficult for you to do yourself. The person’s condition may require medical treatment you can't provide yourself. You may have had an injury or become older, and are no longer able to carry out the physical element of your caring role. A new work or other opportunities may mean you have less time to care. 

Carers often experience guilt and fear when they consider ending their caring role. This can include fears of how the person might manage or guilt about changing the caring role.

These emotions are valid and connected to the life-changing decision in front of you as a carer. Listening to these emotions is difficult but they are there to guide you on the decisions that are important to you.  

Some carers chose to continue their caring role and some chose to use supported living facilities, care homes, or hospice care. Many carers have told us they questioned their decision and all saw positives and negatives in the decision they made. However, the vast majority believe they made the right decision for themselves and their loved ones.

Whatever the decision, you will still feel negative emotions. However, a decision that is made between you, as a carer, and the person you care for is important. By being open and honest with everyone about what you can and cannot do is the best way to support your emotional health in this situation.

For more information on talking, see the Being Heard section of our wellbeing hub.