Leukaemia Foundation

Leukaemia, Lymphoma, Myeloma & Related Blood Disorders.

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Coping as a Carer

All carers respond to the demands of caring in their own way. Feelings are always individual and everyone will react differently. Regard your feelings as signposts. They will tell you when things are not going well and need your attention.

Some of the feelings that carers often say that they experience are feeling overwhelmed, confused and shocked by the diagnosis, or realising the changes that caring will being into their lives.

“I never expected this to happen. I didn’t know what had hit me.”

Guilt 

Guilt can be a common feeling. Carers may feel responsible for the illness occurring, not wanting to be a carer, losing their temper or being embarrassed by the person being cared for. Carers may particularly feel guilty about taking a break from caring or placing the person in residential care.

Anger 

Carers may become resentful if they are the sole carer or others in the family don’t do their fair share. They may become frustrated with the person they are caring for if they regularly face challenging behaviours, angry outbursts, self-centredness or many of the other issues that can arise.

Carers will often become angry from lack of support when friends don’t make contact anymore, support services don’t provide enough help and the focus always is on the person with the illness.

“As much as I love him and care for him, sometimes I feel physically run down myself.”

Sadness 

Concerns about the future can result in fear, wondering what will happen if you don’t cope or who will take up the caring role if you can no longer do so. 

A sense of loss is often pervasive after a family member is diagnosed with a serious illness. There is a sense of loss of a relationship – the parent, husband or wife, or child you once new. There is the loss of the life you used to know and the sense of who you are, the loss of the life ahead you had planned.

Grief is the emotional pain that comes about as a result of a loss, or a number of losses. It can be one of the strongest feelings experienced by carers and often causes great distress. Grief can go unrecognised because there has been no death.

Recognising your grief, and talking to someone about how you are feeling can help. If feelings of sadness persist for a long time, or affect your life to a great extent, contact your family doctor or community health centre, or the Leukaemia Foundation.

“You have grief all your life whether you recognise it or not. All the expectations you have for your loved one have to be adjusted.”

Feeling stressed

Stress is a part of our daily lives, but too much stress can lead to physical and emotional exhaustion. Caring can mean being cut off from others and facing high stress over a very long period of time. Carers are very vulnerable to stress because of the demands of caring. Stress may bring physical symptoms such as headaches, or difficulty sleeping. Some people become very emotional or anxious. Others report feeling persistently tired and chronically unwell.

Because we can’t always do something about the causes of stress in our lives, it’s important to learn to recognise stress and to try new ways of coping with it.

Feeling depressed

Sometimes being a carer can feel like an endless grind. Over time, you can stop feeling angry or sad about your situation and instead just feel numb. Even happy times don’t seem to lift you, and the simplest tasks seem to take too much energy. You may find you are sleeping too much, or waking early or during the night. You might feel worthless or agitated most of the time, and have difficulty making decisions.

These changes may be signs that you are suffering from depression. Depression is a serious illness but is often overlooked. It is common and it is treatable. Talk to your doctor who will help you find the treatment that works best for you.

leukaemia-foundation-support-group-women-389x292.jpgHow can I deal with difficult feelings? 

Feelings can sometimes become overwhelming and lead you to act in ways you don’t like. It can become hard to think clearly about important decisions.

Just as feelings are individual, so are ways of dealing with them. However, there is a way to deal with difficult feelings that many carers say is extremely helpful – talking to others in a similar position, have a break, get information and get support from others who know what your situation is like. 

Sharing ideas, feelings, worries, information and problems can help you feel less isolated. Sometimes family and friends don’t understand the condition of the person you are caring for. People in the support group will understand.

Support groups bring together carers in local areas, sometimes under the guidance of a facilitator who is experienced in supporting carers. Often other carers or works are invited to present information and training. Click here for details of support programs offered by the Leukaemia Foundation throughout Australia, including online and telephone forums where you can be heard and supported by others who understand. 

Counselling 

Counselling involves talking to someone who understands and can work with you to give you the encouragement, support and ideas to improve your situation. It can be a way to assist with the many changes in your relationships and roles, as well as dealing with the strong feelings associated with caring.

Counselling can involve just you and the counsellor, either face-to-face or over the telephone, so it’s important that you feel comfortable with the counsellor you choose. Anything that is said is completely confidential, so it’s a good chance to talk about those things that you may feel you can’t raise with family or friends.

Counselling usually involves a limited number of sessions but can vary according to your needs. Some counselling services are free. Private counsellors charge a fee, although many are willing to negotiate their costs. 

Planning for breaks 

You cannot care constantly without a break. It can be difficult, but ask for help. Ask family and friends and respite care services, but make sure the breaks are regular and frequent. 

Planning for health 

Regular exercise, rest and nutritious food are all necessary to withstand stress. Try to plan your day so you get all three.

Walking, swimming, yoga, gardening or dancing are good ways to get some gentle exercise. Learning to relax, listening to pleasant music, meditation or doing specific relaxation exercises can help you sleep better.

Trying new vegetables or fruit, eating at regular times and looking for new recipes are good ways to make eating healthy easier.

You need a sense of humour. Sometimes a laugh helps relieve the stress. 

Planning to keep friendships and interests

Try to relax and enjoy yourself. Maintain an identify of your own separate from the person you care for.

Keep your links to the world outside caring. Absorbing interests, having fun and relaxation are all good for our physical and mental health.

We can help

You can contact us direct, anytime to talk about the issues you are facing or just to let your feelings out in a safe and supportive environment. To speak with an experienced member of our support services team in your area, call 1800 620 420.