Challenges as a carer and how to cope

Memory Service: Challenges

Common feelings

Depression

Depression is a treatable condition that has often been found amongst carers. If you suffer from a loss of appetite, poor sleep, low mood, hopelessness or lack of enjoyment, you must speak to your GP. This is particularly important if the depression leads to thoughts of death and self-harm.

Treatment can be effective in bringing relief from these unpleasant symptoms and feelings. The memory teams have specific support /therapeutic groups for carers. These groups offer a chance to share experiences and gain some emotional support. Individual therapy is available for carers to support them through this journey. This support could be accessed through Improving Access to Psychological Therapies (IAPT). You can self-refer or ask your GP to make a referral. The Memory Service can also offer some support to carers. Medication may also be an option in dealing with depressive feelings.

How do you cope with depression? 
You may find that you withdraw from friends and family and reduce your usual daily activities. It is important to keep yourself active. Try to do one small enjoyable activity a day.

Anger

Carers may feel angry about many aspects of their situation - the unfairness, the responsibilities and the change in lifestyle.  Sometimes it feels as if the person with dementia is going out of their way to frustrate you. You tolerate all manner of irritating incidents and then suddenly a minor event can make you snap.
Anger is more likely to appear when you are tired, alone or unwell. The experience can reawaken strong feelings that have their roots in memories buried in the past.

Being a carer can sometimes be a very stressful role. It may not be possible for one person to do it all.

How do you cope with anger?
If it is safe to do so take yourself out of the situation for a period. Why not treat yourself to a regular break? Call a friend or relative who understands - ask them to come and be with you or give you a break. Think about what it is that makes you angry. Writing it all down can be as helpful as having someone to talk to.

Guilt

Being angry with the person you are looking after can make carers feel guilty. You think that you should be able to cope and never get angry with someone who cannot help what they do. 

Some people become carers out of a sense of duty. They may feel guilty because they don’t get any pleasure from their role. Others may have grown to resent the person they are caring for because of their behaviour and the demands that they make. For some, the negative feelings are not new but arise out of a relationship that has been difficult in the past.

Depression, anger and guilt can be very draining – they can take away the humour, erode the enjoyment and make caring much more stressful. Sharing these feelings with other carers can bring some relief as you discover that you are not alone.

Isolation

Caring for someone with dementia can lead to isolation. Your lifestyle, including social contacts, can get lost. Relatives and friends may be too busy to keep in touch. Others may find the dementia too difficult to accept and stay away. Occasionally the carer will try to protect the person with dementia and themselves from embarrassment by keeping out of sight.

You may want to share information about dementia with your family and friends to help them understand. You can show them sheets from the information pack or direct them to resources online. It is important that you talk with people close to you about challenges you face. Share the positives with people too. Joining a network of people in a caring role can be supportive as they can understand some of the struggles you face.

Getting a break

Carers need time for themselves. Sometimes this can be arranged through day care or respite. Alternatively a ‘sitter’, relative or friend may be able to take over the care for a short while.

Use the time to look after yourself. Take up one of your hobbies again. Visit family and friends whose company you enjoy. Take a walk in the garden, make a cup of tea and have five minutes to yourself. Carers’ groups can provide helpful information as well as the opportunity to make new friends who share and understand your situation. It is important to get to know local supports through services like the memory team or the Alzheimer’s Society.

Dementia awareness

We have a much better understanding of dementia these days. People are more tolerant and compassionate than you might expect. Explaining that your loved one has an illness can help to remove any fear and misunderstanding.