How often have people said to you, ‘You must make time for yourself’?
And how often have you thought to yourself, ‘How can I? It’s impossible!’
It’s a common scenario: as the person you care for needs increasing amounts of help, you, as their primary source of support, become ever more absorbed in providing care. Over time, caregiving responsibilities take up more and more time, at the expense of your own interests and activities, the things that you enjoy and give you fulfilment. Carers can become so immersed in the demands of caring that their own mental and physical health is affected. It can feel like a never ending circle, with no time or space to breathe and relax.
Time is something that we are all short of nowadays. Everyone is ‘busy’, and this certainly applies to family carers. Caring can be a 24/7 commitment. There are rewards, but there are also many challenges. Carers can become very tired: being forever available, and constantly responsive to someone’s physical and emotional needs, is exhausting. The unpredictable nature of dementia makes it extremely difficult for a carer to take a break. Sleep disturbance is common and any sense of routine is hard to maintain. Time-out for yourself is snatched in moments. Very little in the way of day-to-day activity can be reliably planned.
Carers often speak about having to give up their hobbies and pastimes, in some cases too, their jobs and careers. It can be hard to maintain contact with friends, difficult to free-up time for children and grandchildren. The demands of caring for a spouse or partner, or a parent, can be all consuming; even when you do get time off, your mind is still occupied, worrying about what Is happening in your absence, what you might have to deal with when you get back, how you will cope in the future.
Caring responsibilities within families may be unevenly shared. Disagreements between siblings, and with in-laws and other relatives, can lead to resentment and feelings of anger, isolation and loneliness.
Is this a familiar picture? Perhaps you have found ways to relax and switch off that have worked for you? We would be pleased to hear from you, and many other carers would too.
During stressful times in my life, and especially when I was caring for my husband, I found swimming very relaxing and therapeutic. Swimming gives me time alone, allowing space in my mind to clarify thoughts and make decisions. The rhythm of the swim strokes helps my body to relax and being able to power through the water creates a feeling of freedom and exhilaration. Plus, of course, it’s physical exercise, and we all know that is good for us!
One carer I know, Simon, who looks after his wife, Christine (with young onset Alzheimer’s) was referred by his GP to a mindfulness course: six sessions delivered by a psychologist in the NHS and free to attend. Simon found the course very helpful and now uses the techniques he learnt in his every day life, especially at moments of tension and when he feels himself becoming overly anxious about a new problem that he cannot immediately resolve.
Caroline, who cares for her husband, Malcolm, takes time out every week to participate in a dance class for ‘older women’. She loves it, she says that it makes her feel alive and like her ‘old self’ again.
Avril has joined a walking group. She finds the weekly walks very relaxing, and enjoys being with people who are not connected to the world of dementia. Crossroads looks after her husband while she is away, and when she gets home, she feels refreshed and more able to cope.
Brian and Paul, both in their 70s with wives who have dementia, go to a weekly cooking class. They are learning a new skill which they feel will stand them in good stead for the future. It’s a social outlet for them; and it’s fun, they laugh a lot as they learn. It’s also an opportunity to share experiences of caring, helping them feel less alone and able to speak about sadness and loss.
If you find it helpful to talk to other carers facing similar problems as yourself, there are many support groups available, provided by he NHS, carers organisations and charities such as Age UK and Alzheimer’s Society. In some area, small groups of carers get together for informal meet-ups in a local pub, coffee shop or each others’ homes.
It’s all easier said than done, I know, but it really is important for you to find an outlet that works for you. Everyone copes differently: some people find that sharing experiences with other carers is the best support, whilst others prefer to do something completely different and ‘get away’ from dementia for an hour or two, enabling them to return with renewed energy and a fresh perspective.
Frequently I hear carers say, ‘My life is on hold’. Living with dementia is ‘life’. Dementia can last for many years. Holding on to your life and continuing to invest in your own interests and aspirations really is vital.
Next time you have an opportunity to do something for yourself, take that step, try saying ‘yes’ instead of ‘I can’t’, see what it feels like. Your life is important, you do not have to stop living it because you are a carer.