Suzy Webster shares her experiences of caring for her mum, Barbara, 69, who was diagnosed with Alzheimer’s and hydrocephalus in 2012.
How was your loved one diagnosed?
Mum had been having problems for a long time, at least 12 or 13 years, but she was diagnosed with stress and anxiety and told to ‘keep calm’, rather than it being recognised as the early stages of dementia. However, she kept having falls, and she had to quit her job at the bakery. Eventually, her GP referred her to the hospital for a brain scan and the memory clinic diagnosed her with Alzheimer’s and hydrocephalus (excess fluid on the brain).
It was almost a relief when we got the diagnosis as we knew how to care for her better, but I did feel guilty about her problems initially being dismissed as anxiety and depression, as if we’d known earlier, we might have been able to support her better.
Were there any signs that, looking back now, you recognise as the early stages of dementia?
Definitely but I suppose because Mum was so young the last thing we thought of was dementia. I guess the main ones were that she kept having falls. People make an assumption that dementia is all about memory, but for mum, it really affected her mobility. She was in her 50s at the time, so of course you don’t immediately suspect dementia. But I also remember one occassion when she was trying to remember where to plug in the vacuum cleaner in a house that she’d lived in for years.
What happened after diagnosis?
Soon after Mum had her diagnosis we made a decision as a family to all live together, Mum, Dad, my husband and two children. We knew we needed to take a team approach to caring for Mum.
How did you tell people and what was their reaction?
Mum had lived with dementia (we believe) for a long time. The diagnosis did not come as a surprise to anyone apart from the fact that she was so young and some people thought of dementia as an older person’s disease.
What challenges did you face and when did they happen?
Our main challenges have come from the lack of understanding and lack of joined up care from Mum’s 12 different health and social care professionals. We try to cope alone as much as possible due to this! We also feel confident to raise awareness as a family hoping to effect some change. A student from Bournemouth University made a video of what life is like as an inter-generational family where someone has dementia and all living under one roof [you can watch the video below]. I also do some public speaking, campaigning and Tweet a bit.
Have any particular products helped?
Mum has a day clock and calendar which helps orientate her to the day and time. As Mum’s mobility reduces, we are using more aids around the home like a stair lift and adaptions to the bathroom such as grab rails by the toilet and in the bath, and a raised toilet seat.
Have any services made a difference?
I run a Singing for the Brain group, and Mum comes along to that, which she absolutely loves. She also sees a support worker from Crossroads Care (part of Carers Trust), who is almost like a member of the family now.
We take the whole family to The Mede in Topsham, Devon, which is a specialist family holiday home for people with dementia. They link up with a local care agency and GP to provide a supportive environment for someone with dementia while you’re away on your break. We’ve got some lovely memories from spending time there and I think that’s so important for my children as they’re growing up.
I remember one time when we were all sat out along the sea front with ice-creams feeling on top of the world. My daughter turned to me and said, ‘Grandma won’t remember this tomorrow will she?’ and I said, ‘No, but you will, and that’s just as important.’
Has your experience of living with someone with dementia changed your perceptions of it?
It cannot be underestimated how loving someone with dementia is an emotional journey, and you cannot prepare for it or know what is around the corner. Our family’s lives changed forever when Mum was diagnosed. We live with loss but are closer than ever.
What lessons have you learnt since becoming a carer and what advice would you pass on to other carers?
I think it’s important not to judge anyone who’s in the same position. What works for some won’t work for others. Some people have thought we’re mad having Mum come to live with us, but it works for her and it works for me and the family.
Try to get your ‘homework’ done as soon as possible and find out what services are available in your area. For example, in Wales, they have a free 24 hour dementia helpline you can call (0808 808 2235).
It’s really important to give yourself some time away. I always try to have an event – a gig or concert – booked so I have something to look forward to. Of course, I have to be organised so I can fit it in alongside everything else, but it’s worth it.
Finally, try to be ‘in the moment’ as much as possible. Really appreciate those ‘ice-cream moments’. When I’m getting stressed or flustered, I (or my girls) try to remind me that it’s only the ‘now’ that’s important.
Watch Suzy’s video below.