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Thinking about when caring changes

One of the most emotional parts of the caring journey is when your caring role changes. Most carers think about these changes at the start of caring when someone falls ill or has an accident. Or you may be thinking about it at the end 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 where 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 cannot stop your emotions or choose which emotions you feel at different points. You cannot control who these emotions are aimed at. You are going to feel what you feel.

“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)

What you can do is accept that you will feel emotional and, when caring changes, it may feel difficult. This small step is important as many carers have spoken about denying their feelings and them building into something bigger that was accidentally directed at someone or something else. This created further feelings of guilt or sadness and, in some cases, made the situation more difficult.  iStock 1201091115 min

You can also prepare by building relationships with people so that you can share your feelings in a safe place. Carers have given multiple examples of how they do this. Some share a bond with a close family member or friend. Others seek professional support talking to counsellors or therapists and many have spoken about online support groups on social media or the Carers UK forum.

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

Delayed reaction

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 does not mean you care any more or any less than someone else. Everyone processes information differently and has a different response to difficult information.

Forgiving yourself

“I went on Amazon and loaded up the credit card on stuff for myself. I could not believe I was so selfish” (anon carer)

It is important to forgive yourself if you do something that you regret. This is particularly important at a time of high emotion like when your caring role changes.

Several carers spoke to us confidentially about the actions they have 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 many of their, and their partners, friends and family after their child was confirmed to be autistic. They did not 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.

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. This can happen in many ways. The person’s condition may require medical treatment you cannot provide yourself or you have had an injury or become older, and no longer be able to carry out the physical element of your caring role. It could even be a work opportunity that means you are no longer going to be living close enough to provide the care you currently are.

Hearing from carers who have faced this issue, the majority spoke of guilt being the overriding emotion. Often phrases like ‘am I abandoning them’ or ‘will they no longer feel loved’ were at the forefront of these carers’ minds. Others described feelings of anger towards being in this situation and great sadness at being forced into a situation where this decision had to be made.

Perhaps surprisingly to many, the most common emotion spoken about was fear. Fear of what would happen to the person they care for. Fear of what it would do to their relationship and fear about what their identity would be if they were no longer caring on a day-to-day basis.

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.  iStock 1201491934 min

What complicates this situation further is separating these emotions from the practical elements that have brought you to this point of deciding what is best for you and the person you care for. Sometimes practical elements simply mean you cannot listen to your emotional response and sometimes your emotional response is based on unfounded fears.

Of these carers, there was a relatively even split between those who chose to continue their caring role and those who chose to use supported living facilities, care homes, or hospice care. All still question their decision and all saw positives and negatives in the decision they made. However, the vast majority believe they made the right decision for them and their loved one.

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 leads to the most positive feelings after the fact. By being open and honest with everyone on 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.  

Practical support

When caring for someone changes, you have a legal right to choose whether you can continue caring and to get more information and support to continue doing so.

Information, Advice and Assessments

The first place to go is to contact your local council, request information on their services, and ask for advice. You can also ask for a carer’s needs assessment. This is when someone from the council talks to you about your caring role and sees if you qualify for more paid-for support. The person you care for can also have a disability needs assessment to see if they qualify for more support.

You can find more about assessments by clicking here.

Supported Living and Care Homes

To make the decision whether the person you care for needs to be in a professional care environment requires gathering information on what it means for you practically and financially.

Our guide on when caring ends or changes which contains practical information can be found here.

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