Caring for Carers

Carer Facts

1. If the carer is tired or stressed, it can become harder to care for a person with dementia;
2. It is important for carers to continue activities they enjoy;
3. For some men, taking responsibility for household jobs and being a carer may mean learning new skills;
4. Carers may experience feelings of guilt, loss or anger;
5. Carers should take a break from caregiving to avoid becoming worn down;
6. Support and respite care are available for carers and can provide comfort and practical assistance.

Carers of people with dementia are not alone

A large number of carer support group exist throughout Australia. Many people find comfort and practical assistance by attending meetings with others who know what it is like to care for a person with dementia. Support groups bring together families, carers and friends of people with dementia. 

The physical and emotional demands of caring for someone with dementia can be high. As the amount of care that is needed increases, more time and energy is required from the carer. If you are caring for a person with dementia, you need to look after yourself or the demands may wear you down. 

If you are worn down, caring will become even more difficult and it will not be easy to continue balancing your own needs as a carer with those of family and the person with dementia. 

You need support and assistance to care for someone with dementia.

Asking for help

As a carer, you can take care of yourself by being open about what help you need now and planning ahead for what help you may need in the future. Help often, but not always, comes from relatives, friends and neighbours. Seeking outside help is also important for many carers. Doctors, psychologists, social workers and counsellors all have experience helping people who are caring for others.

Some suggestions for reaching out to others include:

• Aim to share the care of the person with dementia;
• Don’t hesitate to ask for help;
• Suggest specific ways that friends and relatives can help, such as bringing a meal, helping with the housework or shopping;
• Organised regular breaks – this is very important. Some friends and relatives may be able to care for the person with dementia on a regular basis. Local day centres can also offer suitable programs for people with dementia and respite for carers. 

Common feelings experienced by carers

As a carer, you are likely to experience a range of difference, and often quite extreme, feelings. This is particularly difficult because, as dementia gradually causes the person’s abilities and personality begin to change, the nature of relationships will also change. 

There is no simple way to deal with these feelings, but it may help to understand that the complex and changeable emotions you feel are completely normal. 

Some feelings commonly experienced by carers of people with dementia include distress, frustration, guilt, grief and loss, exhaustion, annoyance and anger.

Guilt experienced by carers

It is quite common to feel guilty about things such as:

• The way the person with dementia was treated in the past;
• Feelings of embarrassment about the person’s off behaviour;
• Losing your temper;
• Not wanting the responsibility of caring.

If the person with dementia goes into hospital or residential care, carers may feel guilty that they have not kept them at home for longer, even though everything that could be done has been done. 

You may feel guilty about past promises that cannot be met, such as “I’ll always look after you.”

Anger experienced by carers

It is natural to feel frustrated and angry. You may be angry at having to be the caregiver, angry with others who do not seem to be helping out, angry at the person with dementia for difficult behaviour and angry at health providers and support services for not having answers.

Coping with feelings as a carer

If you are a carer, some helpful tips for dealing with feelings of guilt, loss and anger include:

• Feel the pain – allow yourself to really feel what you are feeling. Denying the feelings only intensified and prolongs the pain.

• Cry – tears can be therapeutic.

• Talk – Share the pain to help diminish grief. It can be helpful to talk to a person outside the family, such as a counsellor.

• Keep a journal – a private place where anything can be written, including unfulfilled wishes, guilt, anger or other thoughts and feelings.

• Let go – try not to be engulfed by bitterness.

• Find comfort – Different people have different ways to find comfort, including rituals like prayer, meditation or other activities.

• Hold off on decisions – tread carefully before making decisions and thoroughly explore all options before you take any major steps.

• Be kind to yourself – be patient with your feelings, and find a balance between the happy and sad person, the angry and peaceful, the guilty and glad.

• Learn to laugh again and rediscover your sense of humour – finding joy in life can be one way to honour the happy times that you used to share with the person you are caring for.