Coping with feelings of guilt as a carer of someone living with dementia

Caring for a person with dementia can be challenging and many people will feel a range of emotions as a carer. One of the most common feelings is of guilt. On this page, our dementia specialist Admiral Nurses explore why carers might feel guilty, how to manage these feelings and how to get support.

Is it normal to feel guilty as a carer?

When you are a carer, it’s normal to experience a range of emotions, guilt being one of them. Whether you feel that you’re not the best person to do the job or are struggling to cope, it’s important to remember that you are human and your feelings are valid. 

Why do I feel guilty?

There are a number of reasons that someone may feel guilty as a carer and each of them deserves talking about and understanding so that you can get support and relieve feelings of guilt. 

Caregiver burnout

All of us can face burnout if we are physically, emotionally and mentally exhausted. When you are caring for someone with dementia, it is understandable if you become overwhelmed at times. It’s important to recognise how you’re feeling and talk to someone about it to start to tackle burnout. 

Not feeling like you’re doing enough

When you are caring for someone with dementia, it is easy to feel that you could be doing more, especially if you have a close relationship with that person. Remind yourself that it is not possible to care for someone on your own 24 hours a day – and that you are doing your best.  

Feeling like you are neglecting other areas of your life

It may feel like other areas of your life are being neglected because of your caring duties, such as time with other family members, your friendships, social life or work. We are often our own harshest critics, and talking openly about the situation with the people you feel you’re neglecting may help you feel better understood. 

Relationship difficulties

There are many reasons a relationship may struggle when someone takes on a caring role. In romantic relationships, it can be challenging to spend quality, one-to-one time with your partner around your caring responsibilities, while children and young people may struggle to understand the challenges of being a caregiver and why you have less time and energy to devote all your energy to them, leading to feelings of guilt. Try to be as open with them as possible to help them understand. 

Your relationship with the person you are caring for may have also become more difficult, particularly if they cared for you at one point in your life – for example, if you care for a parent. 

Missing life before being a carer

It is normal if you sometimes miss your life before you were a carer and the freedom that came with it. This is common and something that many people feel at times; it doesn’t mean you don’t want to care for the person you are supporting.

Feeling frustrated

The symptoms of dementia can be challenging and complex, and it’s understandable if you sometimes become frustrated with the person, particularly if you don’t know how to help them or they are resisting your support. It’s important that if you feel frustrated, you give yourself a few minutes to take a deep breath and feel calmer – this might involve going into another room, if it’s safe to leave the person briefly. 

If the person you are caring for is displaying more challenging behaviour or struggling more than they did before, it’s important to talk to their GP about any changes so you can find out about whether any treatments or support may be available. 

Wanting a break

While you might feel guilty for wanting to take a break from your caring role, having some time away may allow you to rest and recharge and feel more able to cope with your responsibilities. Respite care or professional home carer could provide the break you need. 

Unequal distribution of caring responsibilities

If you are taking on the majority of caring responsibilities and you feel other family members are not pulling their weight, it can feel unfair and lead to feelings of resentment or overwhelm. If this is the case, try talking to others who may be able to help with tasks and calmly explain how you’re feeling, as well as what you need help with.  

Feelings of guilt about moving your loved one into a care home

It is natural to feel guilty about moving someone into a care home, especially if you have been caring for them up until that point, but it is important to remember that: 

• It is not a failure on your part – as dementia progresses, many people will need more specialist care from trained professionals in a safe environment
• Care homes not only specialise in supporting the person’s health and wellbeing, but can also help give a sense of community, as well as activities and companionship
• With some of the caring responsibilities relieved, you can go back to focusing on the relationship between yourself and the person you’ve been caring for, and enjoying your time with them

How to manage feelings of guilt

As previously mentioned, feelings of guilt are understandable and perfectly normal. These emotions can be difficult to acknowledge and accept, but there are ways to manage guilt and take care of yourself and the person you are caring for. 

Acknowledge where the feelings come from

Acknowledging your feelings and where they come from is an important step in managing them and making a plan of action to help you feel better. Ask yourself why you feel guilty and when the feelings started to pinpoint what has caused you to feel this way. 

Speak to loved ones about your feelings

Opening up to those who love you can bring feelings of relief and comfort. It is also worth nothing that unless you are honest, they may not know how you are feeling or how to help you, whether that be by sharing caring duties or providing emotional and practical support. 

Setting expectations

It’s important to remember that you are human and can’t do everything yourself. Having clear boundaries and setting expectations means that you can get support and look after your own mental health. If you are splitting caring responsibilities with another person, discuss who is responsible for what and make sure to keep communication open and honest. 

Looking after yourself

It can be easy to overlook your own needs if you are caring for someone else, but it’s important to ensure you are healthy to be able to give them the best support.

Exercise

It’s recommended that adults get 150 minutes of exercise per week to stay physically and mentally healthy. Physical activity like walking, exercise classes, going to the gym or out for a run can also give you a break from caring duties. If you request a carer’s assessment, you might be eligible for some assistance to help you access exercise to support your mental and physical health.

Diet

We all need healthy, balanced meals to give us fuel. While it’s understandable you may not have much time to cook – or even eat regularly –  there are ways that you can eat healthily without too much preparation. Batch-cooking healthy meals that can be put in the freezer and warmed up later is a great way to make sure you eat well if you don’t have time to cook every day. You can also prepare healthy snacks to keep in the fridge or carry around with you, such as fruit or vegetables like carrot sticks.

Therapy

Sometimes talking to someone outside your family and friends can be helpful, particularly to process any difficult emotions or situations you are facing as a carer. Your GP can direct you to therapy services in your local area.

Focus on the positive impact you’ve had

When you think about what you’re doing for the person you’re caring for, focus on the positive impact that you’ve had on them and their life. If you’re having a tough time, consider what you would say to someone close to you who is experiencing the same feelings while caring for someone else.

Let’s talk about guilt – Susan’s experience