Help Yourself

People with a dementia disease will always need help from the people around them. But it can be hard to accept help, especially when you cannot tell what is needed and why it is necessary.

For many people it will be a challenge to ask others for help with something they used to be able to do easily. Most relatives would like to help, yet are unsure about how to help you and when. The result may be that they do not offer their help.

Therefore, it is best if you tell the people around you how you would like them to help. From the beginning of your disease, be proactive in determining and telling when and how you would like help. Be proactive in making arrangements for how you would like to be helped later on in course of the disease. The "arrangements" may fall by the wayside, but it is nice for your relatives to know your wishes and to think ahead.

Your closest relatives will be the people you will need as carers. Most are happy to take on that role, but you have to remember and take care of them. It can be hard to be a carer. Carers can become exhausted, and thus it is good to have a back-up plan so there are options (whether this be other family members or paid carers) should you need them.

• Make a list of what you would like help with and how.
• Make a list of your carers.
• Write down what each person can do for you.

You can, for example, make an outline showing what you would like help with and by whom.

Example:

Later on in the course of the disease, it will become hard for you to accept help because you may be afraid of losing your identity. You may need to adjust your perceptions of your capabilities as well as your attitude towards offers for help. For example:

Help with personal care

If you are offered help with bathing and personal hygiene, you might think: "That's because 'they' don't think I'm clean enough, or that I can't remember the last time I took a bath." Turn the offer of help into something positive. "It's nice that I can get help with bathing and clothing myself, so I can feel fresh and at ease."

Help handling finances

"I've always been able to handle my money, why are they interfering? Are they afraid there won't be anything left for the heirs?" Turn it into something positive: "It's nice that someone is making sure I'm not losing my money. Or using it on things I don't need. It's nice that somebody is making sure that I still get something new once in a while."

Help stopping driving

"I've driven a car my entire adult life, why am I not allowed to drive anymore? I haven't been in any accidents. It's none of their business if I drive." Turn it into something positive: "Driving a car when the brain no longer functions optimally can be catastrophic. It is good to have someone tell me when it's time to give up my drivers' license. I don't want to cause traffic accidents and hurt other people."