Date: 04 June 2016
I felt very much on my own. I cared for my mother at home for more than six years and continued to be her carer and advocate for four further years when she went into residential care. I was the co-ordinator of my mother’s care and there was no obvious guidance as to how to go about this or what help was available.
I wish now that I had felt able to seek out more support and that it had been more obvious how to access it. What I really needed was a lot more care for my mother at home and some respite care to give me a break but as this wasn’t offered, I struggled on, as many carers do.
Initially, Mum was well supported, in particular by the people who ran the memory clinic that she attended. They also gave me emotional support, even when Mum no longer attended the clinic but otherwise I didn’t feel there was any support. The clinic staff were very good to me but everything else felt like a struggle.
I don’t think I fully exploited the support that social services may have been able to give – I believe I should have explored that sooner.
I did discover that you had to fight for any sort of support from them. But there’s also no getting away from the fact that it is hard to ask for help. I suppose this is what the researchers mean by ‘the hidden needs of carers’. It certainly would have been good if there had been some routine system for the people who were caring for Mum to also check out my needs.
I would also advise people to talk to at least one of the charities that support people in this situation: the Alzheimer’s Society or perhaps Dementia UK or the Stroke Association. They have a range of information resources for people caring at home and - if you are able to get to them – local support groups may prove useful.
As I was Mum’s sole carer and working full time eventually it became unrealistic to continue to care for her at home. Regrettably, I didn’t see her transition into residential care as a positive move, largely because the quality of what was available was generally poor and indeed in one place actually unsafe because of the mix of the residents, the staffing ratios and the skills of the staff. So I would advise anyone looking for residential care for someone with dementia: look very carefully and critically at the care facility; take someone with you who knows how these places work; ask searching questions about the way the facility is staffed and managed, especially as the staff’s skills are so crucial; be prepared to be a strong advocate for your person’s needs. When it comes to care, nothing is volunteered, you have to ask.
Don’t forget, too, that your needs as a carer don’t stop once your loved one has died. You may be left with feelings of guilt and anger and you may even feel anxious that some form of dementia may affect you later in your life. Though health and care services see the case as closed once the person with dementia has passed on, you still need to take care of yourself, so seek out the support you need.
Jenny shares her experience of caring for her mother and offers advice for other carers.