These tips have been suggested by carers and professionals attending the Unpaid Carers Support Dementia events. The professionals are from Southampton’s Admiral Nurse team and the Alzheimer’s Society. We hope that you find these suggestions useful.
• Talk to people who have been in the same situation – give yourself permission to talk about how you feel.
• Don’t beat yourself up – you are doing your best.
• Accept support – however hard you find it.
• Ask for support before crisis.
• Accept that this is a living grief.
• Acknowledge that it is hard to hand over control.
• It is OK to not be OK.
• Acknowledge disappointment in lost opportunities to share problems and good times with the person – it is natural to feel this loss.
• You may feel frustrated – try and accept that you can let things go. Where you can safely do it – vent your feelings.
• Remember it is the illness changing their behaviour and it is ok to feel fed up. It is hard.
• Men can find it harder to talk to others – try a Memory Café for support (Run by Admiral Nurses).
• As soon as you realise there are changes – seek support. Guilt often holds us back from doing this.
• You may feel cross with yourself if you are not always patient – accept that this is a difficult situation and it is natural to feel this way. Be kind to yourself.
• People can find it harder as they age themselves – what happens if you die first? Put a back up plan in place – Unpaid Carers can support with this.
• This is a journey with a process before peace, you will experience shock, denial, guilt – try and talk it through with people who have been there or professionals.
• Talk to others who will let you chat without judging.
• Not all family members will cope in the same way. Some will be better at the emotional side and others at the more practical (perhaps financial) issues. Try to accept this and don’t be swayed by people who comment that you seem to do more.
• Try to not look too far forward – not all dementias progress in the same way – don’t be panicked by hearing ‘horror’ stories – everyone is different.
• Accept that it can be two steps forward and one back at times. It can be hard when one day they seem more like they used to be and the next more confused.
• If the person lives alone try and persuade them to have the TV on as it helps to keep them distracted and can lift from low mood.
• Make others aware of what is happening.
• Be very patient if taking someone with dementia out – allow extra time for them to get ready to avoid rushing them and causing stress.
• Where possible have continuity of (paid) carers to avoid more confusion.
• Try not to argue with them – it is hard to bring them back to your world. For example, they may think their parents are picking them up (who may well have passed away) – suggest you make them a drink, as their parents may be a little late and discuss what would be their favourite food for their evening meal. This will lead on to a different conversation hopefully. Maybe about food! It is hard to keep telling them that people have passed away as it may seem like the first time they have heard that. Distraction can be useful.
