Laura Bridgeman (pictured as a baby) shares her experience of caring for her mum Ruth, 79, who has Alzheimer’s disease
How was your mum diagnosed?
Mum was sent repeatedly to the Memory Clinic in Bath. She was given a 20 minute test which included maths and general knowledge questions and counting backwards from 50. Mum performed well in these tests – it was like school for her – and the only conclusion they reached was that she was terrible at her times tables. Mum’s mental arithmetic had always been poor so that didn’t prove anything, but eventually they told us she suffered from Mild Cognitive Impairment (MCI). About one year later, in 2014, that was changed to Alzheimer’s.
Looking back, were there any signs before that she was in the early stages of dementia?
I knew something was wrong for about five years before diagnosis. Mum was forgetful, erratic and argumentative. She would cancel plans suddenly, lose things and her driving became dangerous. When we eventually got the diagnosis, it was a relief. It helped us a lot as a family to actually name it.
What happened after diagnosis?
Mum’s life was just as full as before, but with some adjustments. She started writing things down on sheets of paper – copious notes, diaries, lists and bullet points. We got in carers to supervise meals and bath times. We applied for the Independent Living Allowance and were awarded the lowest rate – we weren’t eligible for more funding because of Mum’s pensions. The Alzheimer’s Society also visited. But it was when my father passed away two years ago that Mum went downhill.
How did you tell other people and what was their reaction?
As a family, we were used to having diagnoses. Both my brothers have mental health issues schizophrenia and bipolar, so I told people upfront. Some of my friends had direct experience of Alzheimer’s in their families, while other people had standard reactions such as “Does she know who you are?” Or they kept telling me Alzheimer’s stories about people they knew or had heard about. It was a bit relentless.
What were the main challenges you faced and when did they happen?
Because I teach in universities, and I’m also parent, I’m used to being task-orientated, and to people retaining information. But Mum couldn’t retain information and having to repeat stuff was the biggest challenge for me. I lost patience a few times and snapped at her – my brother had more patience initially. I phoned the Alzheimer’s Society Helpline and they told me to
a) Lower my expectations
b) Stay in the moment
This helped a lot. I was also given Power of Attorney which was quite a challenge because I didn’t want the responsibility, it felt so weird. However, we recently registered the Power of Attorney and I’ve started paying Mum’s bills which is unsettling, though I suppose I will get used to it.
Taking care of Mum is gruelling. She’s living in a nursing home now but it’s still a constant worry. I know she’s only going to get worse. The experience keeps on unfolding and we’re now approaching all the difficult stuff, such as Mum not eating, not swallowing and not recognising us.
Have any services made a difference?
Not really. The carers were okay when Mum was living at home but her needs became too great to live independently. When Mum moved to the nursing home they were also good and helped with funding applications.
Have any products or gadgets made life a bit easier?
Only pens and paper for Mum’s obsessive writing! We also got her a phone with big numbers but she forgot how to use it and then said it didn’t work. We set her digital radio and her TV stations, but nothing additional.
Any tips for other families or advice you’d like to pass on?
– Read stuff and then forget it – every person is different.
– Make sure that your loved one isn’t vulnerable. Mum got a new boiler and ran up some bad debts on the phone before I intercepted. This is common because some people take advantage.
– Try not to be frightened of Alzheimer’s – it’s not just a maudlin, depressing, degenerative illness. You can kick at it, hold it back to some extent and have some laughs. There is still dignity to be found in the awfulness of it.
– There can also be some positives. I’m much closer to Mum now and more intimate. She was a tough Mother and very demanding but this has changed as she’s become more absent, but also more loving. When I speak to her on the phone she says: “Help yourself to supper when you come in,” as if I’m coming home. I know her better than I ever did and I never expected this closeness. I’m thankful for that; it’s a gift.
Has your experience of dementia changed your perception of it?
I didn’t think about it much before. I’d seen films and read books and knew the clichés. But the anti-social aspects of Alzheimer’s such as the lack of etiquette, the loss of words, or the random logic never startled us as a family, perhaps because we were already used to unusual ways of being and behaving because of the mental health issues.
What lessons have you learnt?
To listen. To parent a parent. To be charmed in the face of adversity and try and stay creative in approaching this disease. Try not to hang on to what was possible or impossible yesterday and stay in the moment. Don’t focus too much on a thought or feeling but move through them like wading through emotional waters, that will dry off.
I’m a writer and it also helped me to write about Mum and me. I started a blog as a way to get through it, and my blog grew into a book which spans just over a year of living with Alzheimer’s. It’s been very well received – which is amazing.
Laura’s book How Was The Party? is available to download on Kindle or from her website www.laurabridgeman.com