Could this be YOU?
You cope fairly well day to day, but if you start to think about the future you can’t help feeling really scared about what might happen. Sometimes, those horrible ‘what if’ thoughts creep up on you and can keep you awake at night, feeling anxious and worried about how you will manage.
3 reasons dementia can be frightening:
1 – There’s so much to learn
You may not know anything about dementia when you start caring, but most carers find they learn pretty fast…and then realise how much more there is to learn! Absorbing lots of new information, separating the facts from the fiction (there’s still a lot of fear and ignorance around dementia) and trying to familiarise yourself with all the practical, financial and legal issues that might occur, can be frightening and – at times – overwhelming.
2 – Dementia is unpredictable
No matter how many books you read, or how much information you’ve absorbed about dementia you can never be fully prepared for what’s going to happen next. Each dementia journey is unique; predicting what’s going to happen next month, next week or even tomorrow, is virtually impossible. If you’re the sort of person who craves certainty, this can be a frightening prospect.
3 – Symptoms can be distressing
There’s no doubt it can be really scary and unsettling to watch someone you love behave aggressively, or experience hallucinations and memory lapses. They can leave you feeling bewildered and unsure how to respond.
What are you most scared about?
* A specific issue or event
Look your fear in the face: If your fear is tangible, try to unpick it and work out why it’s quite so scary. For example, are you scared of what might happen the next time your loved one gets upset? If so, can you work out a few strategies in advance that might help you cope? Could you share your fear with someone else or could you ask an expert for advice? You could start by calling the Admiral Nurse Dementia Helpline on 0800 888 6678.
* The next stage of the illness
Whilst you can’t know for sure how your loved one’s dementia will progress, learning more about the dementia journey can help you to prepare, and this can ease your fears. After all, forewarned is forearmed.
Warning: Some people find it reassuring to learn everything they can about dementia as soon as they can. Others may find this a frightening prospect and prefer to learn bit by bit. There’s no right and wrong, do whatever feels right for you, and helps to lessen your fear.
What if there’s a sudden crisis:
Have a plan: If you or the person you care for suddenly becomes ill or has an accident, make sure you have an emergency plan in place.
Tip: Do you know about The Herbert Protocol? If one of your biggest fears is that your loved one with dementia might go missing, go here to find out about a unique scheme that could really help.
If you fear a sudden medical emergency, it might be useful to learn more about what’s likely to happen if your loved one is admitted to hospital. Start by reading our special e-Book Going into hospital when you have dementia. We’ll send it to you free of charge if you join our Caregivers’ Club.
If your main fear is about becoming ill yourself and being unable to cope, make sure you have created an emergency plan. If you’ve had a carer’s assessment you should already have been offered help to plan for an emergency. If not, consider who might be able to step in and help. For example, could a friend, neighbour or family member help out in an emergency? Have you asked them and explained what they might need to do? What information would they need? For example, contact details of professionals and information about medication.
Did you know?
Some areas of the UK have an emergency ‘carer card’ scheme where carers can register and draw up emergency plans with the help of skilled workers. Go here to see if you have one in your area.
Learning to live with uncertainty
If you’re the sort of person who always likes to be prepared, this can be really difficult. But look at it this way; nothing in life is ever completely certain, is it? Many carers find that once they’ve learnt to accept a degree of uncertainty on the dementia journey, they feel more able to cope – and less scared about what might happen.