January 3

Friends often ask me how I am getting along in my role as a carer. The following is taken from a Victorian Government website called Better Health Channel. It describes in very accurate detail the emotions I have been through in the last 15 months, and it says it in a much better way that I can.

“Caring for someone with dementia can be very rewarding. It can also be difficult, exhausting, lonely and – at times – overwhelming. Carers may have to deal with many different feelings as the needs of the person with dementia change over time.

Common feelings experienced by carers

As a carer, you are likely to experience a range of very different, and often quite extreme, feelings. This is particularly difficult because, as dementia gradually causes the person’s abilities and personality 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 may help.

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

Guilt

It is quite common to feel guilty. This may include feeling guilty for the way the person with dementia was treated in the past, guilty at feeling embarrassment from the person’s odd behaviour, guilty for losing your temper or guilty for 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, such as ‘I’ll always look after you’, which cannot be met.

Grief and loss

Grief is an emotional response to loss. The loss could be the loss of a relationship, moving house, loss of good health, divorce or death. If someone close to us develops dementia, we are faced with the loss of the person we used to know and the loss of a relationship. People caring for partners are also likely to experience grief at the loss of the future that was planned together. Grief is a very individual feeling and people will feel grief differently at different times.

Anger

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 support services. Sometimes you may feel like shaking, pushing or hitting the person with dementia. Feelings of distress, frustration, guilt, exhaustion and annoyance are quite normal. However, if you feel that you are losing control, it may help to discuss your feelings with your doctor or an Alzheimer’s Australia counsellor.

Things you can try

You may find some of the following ideas helpful when dealing with your feelings of guilt, loss and anger as a carer:

  • Feel the pain – allow yourself to really feel what you are feeling, no matter what that is. Denying the feelings only intensifies and prolongs the pain.
  • Cry – tears can be a therapeutic tool. Let them cleanse and relieve the pain inside.
  • Talk – share the pain. Sharing grief diminishes it. It is important to talk about feelings, even at the most difficult times. It can be helpful to talk to a person outside the family, such as a counsellor.
  • Keep a journal – a journal is 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. Resentment is a heavy load and can only continue the hurt. If there is a source of anger, try to resolve it.
  • Find comfort – different people have different ways to find comfort. For many carers, there can be comfort in rituals, including prayer, meditation or other activities.
  • Hold off – tread carefully before making decisions. Thoroughly explore all options before you make any major steps. Remember that you may be very vulnerable at times.
  • Be kind to yourself – be patient with your feelings. Find a balance between the happy and sad person, the angry and peaceful, and the guilty and glad self. Have patience with yourself.
  • Learn to laugh again – rediscover your sense of humour. Finding joy in life can be one way to honour the happy times that used to be shared with the person you are caring for.

Take a break

Try to make sure that you get adequate breaks from caregiving so that you do not become worn down. Ask other family members and friends for help. Day care centres, in-home respite and regular residential respite are available to provide a much-needed break, so that you can continue in your role.”

I have found these few paragraphs more helpful than anything else. I keep coming back to them and rereading them.

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