My name is Claire and I am a carer for my Mum who has Alzheimer’s disease. I also work 4 days a week which I juggle around my caring responsibilities.
My caring journey began about six years ago, when I realised that mum wasn’t able to do some of the things she would normally do, such as housework, she also seemed to lose her confidence and retreated into herself. I tried to get her to join local groups but without success. But I did not see myself as a carer until about two years ago when I began to provide practical support such as shopping and housework as well as personal care. Once the diagnosis of dementia was made, I became very aware that I had become responsible for her emotional, as well as physical wellbeing and I was able to find a fantastic day centre nearby which she really enjoyed. Mum went twice a week and she made friends had a lovely lunch and came home tired from all the activities she took part in over the day! Unfortunately, as with lots of areas of life, the day centre closed in March due to COVID-19 and shows no sign as yet of restarting.
As with lots of dementia carers my experience of being a carer is overwhelming at times. Being asked the same questions over and over again can become very draining and it can be hard at times not to become impatient when you keep answering them; no matter how many times you remind yourself that at that moment Mum does not remember asking the question before.
Being a dementia carer also requires you to be constantly alert, at any point in the day Mum could become anxious and worried, forget where she is, who I am, where I am, if I am at work or what day/time it is. This is especially true in the late afternoon and night when sundowning means Mum’s confusion and anxiety is heightened which means that Mum, and therefore me, has broken and disturbed sleep every night.
Being a carer has been very difficult for me at times. It was hard to adjust to being responsible for providing personal care for Mum, but I was quite surprised at how quickly I was able to adjust. However, the most difficult aspect of caring for me is definitely the chronic lack of sleep which I find impacts on all areas of my life and makes it hard for me to get enough exercise which I know I need to do to keep myself healthy.
When Mum was first diagnosed, I gave up work for about a year and a half to look after her, she had lost a lot of weight because she was forgetting to eat and drink when she was home alone during the day, which was not helping the dementia. Having someone with her all day was really beneficial for her, however, it was difficult for me as I felt like I had lost my identity. I had become just a ‘carer’ which was a hard adjustment to make. Once Mum joined the day centre though this freed up some time for me and I decided to gain some volunteer experience which was a great experience and once a care plan had been put in place via social services, I was able to return to paid employment.
Despite the difficulties though I have been surprised that I have been able to maintain my resilience, adapting to Mum’s changing needs. As well as communicating with social services to ensure that she has the necessary equipment in place to help her keep as mobile as possible even as her physical needs have increased. We also receive care visits each day, however the quality of care received varies between the different carers.
The COVID-19 pandemic has made my caring role more challenging. The loss of the day centre and resulting enforced isolation as caused Mum’s dementia to progress but it has also made me think more about the future. I have begun to shift my thinking and I now realise that I need to prioritise my own needs more, which will help me in my caring role as it evolves over time. As well as making sure that Mum gets the care support she needs and deserves in the future.
The most important piece of advice I would give to other carers would be to make sure you have a support network of family, friends and professionals around you. This can include support groups on social media because during difficult or challenging times they can offer advice and support which is invaluable. Also make contact with social services or any local charities in your area which can offer care packages and/or befriending services which can provide you with a break, even if it is just for a couple of hours which makes such a big difference.