It’s a big role looking after somebody with dementia and it can be extremely daunting and lonely without the right support. No one should have to care alone.
Caring for my husband, Eddie
I care for my husband Eddie who is 85 years old and has advanced Alzheimer’s disease. Eddie’s memory loss was first noticeable about ten years ago and has progressed to the point where he now requires full support for all daily activities. For thirteen years, I also cared for my mother who had Alzheimer’s disease, until her death in 2013, aged 102.
I am responsible for the care of my husband round the clock. My ‘job’ involves supporting him and organising his care 24 hours a day, seven days a week. Until recently, I had no support in the home at all but he has now become so dependent that he requires two people for toileting and washing, moving and handling, dressing and more, so an agency care worker comes to our home three-four times a day to work with me to provide this basic care. At night, however, we are on our own and my husband’s care needs result in my hours of sleep being severely curtailed.
Several days of the week, Eddie attends a specialist dementia centre which has been demonstrably beneficial for him over the years of his dementia journey and particularly now that his life at home is so limited by his incapacity. Some days, therefore, I am caring 24 hours round the clock.
You are not alone
Many of the carers who attend a carers’ support group I facilitate also provide care round the clock, but most without any formal support at all. As older carers, if any of us were to apply for a paid job as a ‘carer’ we would not be considered because of our age and if, somehow, a job was offered we would certainly not be allowed to work the long hours that we do, particularly without any breaks, as this would breach employment law. What’s more, the pressure on informal carers, like myself, is increasing. The number of people with dementia is growing markedly and support services for people with dementia and their families are therefore becoming more and more stretched.
Caring can creep up slowly and it can take a while to realise you are a carer. When I became a carer, I already had a fair idea of where to seek support and information, thanks to my long career in the NHS and involvement with the local community and voluntary sector. However, I still went through a steep learning process. If someone with my experience and knowledge found it difficult to get the support needed, how can others expect to manage?
Society is yet to grasp that caring will touch all our lives
A carer still has all the usual responsibilities of life, such as work, raising a family, running a home; but on top of that, they are also coping with a significant caring role. Carers should be able to feel really proud and valued for what they do; essential and valuable members of society. But this is not always the case.
I think there is still a tendency for parts of society to feel somewhat unsympathetic towards carers. People think that if you are a parent, a partner or a brother or sister, then you should be caring for your loved one anyway, so why should you get any special treatment or dispensation? Until you become a carer – which 3 in 5 of us will in our lifetime – it can be difficult to understand how significant an impact caring can have on all aspects of your life.
What being a carer has taught me
What I’ve learnt from being a carer and running a carers’ support group is that every person with dementia is different and every carer is different – we all therefore have different needs, although there are common themes running right the way through the dementia journey. What is often referred to in our carers’ group is the loneliness and isolation of caring for someone with dementia and a feeling of being imprisoned. The individual with dementia becomes so physically and psychologically dependent on the carer that many carers find it almost impossible to organise any respite at all from the continuous responsibility for caring.
It’s a big role looking after somebody with dementia and it can be extremely daunting. Sometimes people are so focused on the person they care for they often lose themselves, and forget their own health and wellbeing. Carers UK helped me and that’s why I am proud to be a volunteer for the charity, to continue to spread the word and reach more carers who might be caring alone.