If you are caring for someone with dementia you cannot manage alone. You need help. If you are caring for a parent who lives alone it may be tempting to believe them when they say they can manage. It will not be true. If you are caring for a spouse or partner it will be more obvious that they are not managing alone but it may take you a while to realise this.
Spouses and partners who live with someone who has dementia are put under constant stress as they try to carry out their caring role. People who have dementia gradually lose their ability to see the point of view of another person – they lose their ability to empathise, to understand the everyday compromises which kept the partnership going. The non-demented partner is left making all the compromises, possibly without even the satisfaction of a shared sense of humour and certainly without the sense of support which they may have had from their partner.
Children of those who have dementia who may be trying to support a parent from a distance whilst balancing their own life and career and caring for children as well may be put under constant stress.
This is a burden which no one however loving and dedicated should carry alone. I recommend that you build a team to help you.
Your supporting team can consist of anyone who is prepared to give time and support to you and the person you are caring for. Other family members, friends, neighbours, professional carers, staff in a day centre and support workers from organisations such as Alzheimer’s Society may all be part of your team.
Family members -brothers and sisters, children and grandchildren can play a valuable part in the team. Tell family members about the diagnosis and ask them to help.
Good friends who want to help need to be informed how they can continue to be friends and to offer their support. Keep your friends and ask them to help according to their ability.
Your neighbour often knows quite a lot about your life and most people want to be good neighbours. If you explain the situation to neighbours they can be a tower of strength. Tell neighbours about the person with dementia and ask them to help you.
Building your support team is one of the most important things you can do as a carer. You need people who can help you to do the things you cannot do or which you find difficult to do. You need people who are willing to help the person with dementia to do the things that they can no longer manage alone.
You may think that asking people to be on your team is a daunting task. It may seem to you as if no one would want to take on the tasks you envisage. But you will find that the amount of time and effort you ask from each helper is actually comparatively little.
In fact most people will be pleased to help. You don’t have to tell them they are joining your team in so many words. You simply ask them to help.
Building your team will bear fruit and make your life (and the life of the person with dementia) more tolerable and even enjoyable in the long run.
About Mary Jordan
Mary works for a national dementia charity and is an Associate Director of ELM (End of Life Management Ltd). She has had considerable experience of caring for elderly relatives and friends and worked in the NHS for 9 years. Earlier publications include books on Caring and on GP Practice Management, in addition to articles in nursing and social care journals and magazines. Mary has published her new book this month by Hammersmith Books called ‘The Essential Carer’s Guide to Dementia’ and each month she will offer practical advice on how to deal with dementia.
About the Author / Mary Jordan
