Worries about dementia

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You may worry that somehow you may have caused the person’s dementia. Doctors and other professionals will be able to reassure you that the dementia was not caused by anything you said or did.

You may also feel it is your fault if the person behaves in certain ways – such as constantly walking about or seeming very agitated or distressed. You need to accept that these types of behavior are associated with the dementia. Do your best to provide a calm, relaxed, routine to help the person feel more secure. But accept that it is impossible to anticipate another person’s behavior all the time.

Accepting help

Many caregivers feel that they should be able to manage without any help. You may worry that the person with dementia will be distressed if you are not there all the time.

Looking after a person with dementia 24 hours per day for 365 days a year is exhausting. Accepting help means that you will have more energy and that you may be able to go on caring for longer. Even if the person with dementia is upset at first about others becoming involved they will eventually get used to the idea and come to accept it.

Respite care, as it is known, comes in the form of help in the home, day care and residential respite care. It is usual for the caregiver to find that the first experience of separation makes them feel guilty and they are unable to relax. But do not be put off. You will both get used to the separation and you will gradually experience the benefits of respite, in whatever form it comes.

Time for yourself

At first you may feel very guilty about having time to yourself. You may feel that you are being disloyal if you are enjoying things that the person can no longer share. But it is important for you to have some life outside caring. You need to recharge your batteries; you matter too.

Conflicting demands

You may feel that you are in a ‘no-win’ situation if you are looking after a person with dementia and a family. You may have job as well. You feel guilty if you are not giving total support to the person with dementia and you feel guilty if you are not giving proper attention to your family or job. Don’t try to meet every demand. You need to work out what are your absolute priorities and how you can meet them. Then see what other forms of support are available.

Feeling trapped

There are some circumstances where people feel particularly trapped. Perhaps their partner developed dementia as they were about to separate. Perhaps the caregiver wants to continue with a full-time career rather than devote themselves to caring. It is often helpful to talk through these sorts of dilemmas with a person outside the situation such as a friend, community nurse or counselor. They should be able to help you to reach a decision that feels right for you.

Residential care

When the time comes for the person to move to residential care it is very common for caregivers to feel guilty. You may feel that you have let the person down. Perhaps you feel that you should have coped for longer. You may have promised them earlier that you would always look after them at home. Now you have been forced to break that promise. It is important to talk this through with someone who understands and who can help you to come to terms with your decision. Remember that any promises were probably made when neither of you foresaw the possibility of dementia and all the strains and stresses it would bring. These feelings can persist for a long time and it is a good idea to find a caregivers support group where you can talk to other people who have shared the same experience.

After the person’s death

At first you may feel relieved that the person is dead. You may then feel ashamed that you have felt this. Relief is a normal reaction. You have probably done a lot of grieving already – as you noticed each small deterioration in the person during their lifetime.

The experience of caring for a person with dementia is a history of many small losses. Each time a loss occurs you have to make an adjustment to your lives together and carry on. To survive the caring process you need to look after yourself.

Guilt can be a very destructive emotion which will consume energy which you need for other things. It is important to understand the reasons why you are feeling this way. You will then be able to make clear decisions about what is right for you and the person with dementia. Try to find someone -a good friend or a professional -to talk to about your feelings.

continue: Getting and Finding Caregiver Help

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Reviewed: 03/2006