Caring for the carer
Often, especially during the later stages of the disease, around-the-clock care is required for people with dementia and often the person providing the care is a spouse or partner, child, friend, sibling or other family or whānau member.
But who cares for the carer?
Caring for someone with dementia can be an intensive, challenging and demanding experience which requires time, patience and energy. It can also be a rewarding. But if you are a carer, you need to know how to care for yourself.
What to do when a loved-one is diagnosed with dementia
When you find out a loved-one has dementia, the first thing you need to do is prepare yourself with as much information as possible. Knowledge removes fear of the unknown and will help you face reality. Click here for more information about dementia and Alzheimer's disease. (link)
The resources section (link) of this website also provides information sheets on nutrition, driving, legal matters, grief and residential care.
You don't have to manage alone. Help is available from your local Alzheimers organisation, health professionals, social services and your GP.
Local Alzheimers organisations provide information, support groups, resources and day-care programmes for people with dementia and their families. Many of the larger Alzheimers organisations around New Zealand offer education and training programmes for carers which help boost self-esteem reduce stress levels and offer coping strategies. There are also regular support, networking and friendship groups for carers.
Look after yourself.
Stress is a normal part of the demanding role of a dementia caregiver, but extreme stress can seriously threaten your health. Make sure you monitor your stress levels.
Recognise your limits. How much care are you personally able to provide?
Write down all the things that are worrying you: the practical difficulties of managing physical care, your feelings and emotions, the lack of space or time out for yourself and ideas about what would help. Be specific, even if the things on your list seem impossible. Identify who you could talk to in order to get support and help, for example, family members, friends, a doctor, a district nurse, a community worker at your local Alzheimers organisation, a minister of religion or social services.
Eat a healthy, balanced diet with plenty of fresh vegetables and fruit. Avoid large amounts of highly processed or high calorie food and only drink alcohol in moderation. Try to get enough rest. If your sleep is disturbed at night, take opportunities to sleep whenever you can. Keep in touch with family and friends. You deserve and need a social life outside your carer role. Take time out to maintain your interests and hobbies. It is important you continue with the activities you enjoy. You have a right to follow your own interests outside of the caring role, and it is important that you do so.
Daily routine
Establish a basic daily routine in the household and try to stick to it to keep things as normal as possible. Try not to treat the person with dementia like an invalid; it is important for a person with dementia to carry on independently for as long as possible. This will help retain dignity and usefulness. Encourage the person to use remaining skills to carry on with tasks they are still able to achieve.
Care-giving feelings
You may experience a range of different and often extreme feelings. These can be particularly difficult because dementia causes gradual changes in a person's abilities and personality and therefore the nature of your relationship with the person with dementia will also change. Anger, resentment, guilt, embarrassment, loneliness and grief are very common among carers. It is important to be aware that these feelings are all normal. Keep in touch with family and friends and discuss what is going on.
Don't feel guilty about taking time off. Looking after someone with dementia 24 hours a day is exhausting. Plan to take regular breaks from the caring role. Ask friends, family or outside agencies to allow you a rest for a few hours. The first few times may be difficult for both you and your loved-one but it is often found that after a few times you will both becomes used to the routine. You may be able to organise respite care through your local Alzheimer's organisation.
One step at a time
You might find it easier to cope once you have adapted to taking one step at a time. Try to focus on what you are doing right now and don't worry about what has been or what will be. Don't worry about what has been yesterday. Yesterday has gone. You can't change it. Try also not to worry about tomorrow. Tomorrow will come anyway. You can deal with it later.
Don't let caring become your whole life. Accept the need to care for yourself.
