When her mum June was diagnosed with dementia six years ago Julia Jones was determined she would continue to live a full life – even if that meant taking a few risks.
How was your mum diagnosed?
Mum’s formal diagnosis came at the memory clinic of her local hospital. It was the culmination of a long period of assessment that involved a series of tests managed by a consultant geriatrician. Afterwards however, she and I were, in effect, tipped out into the snow to get on with it. I remember that someone from the Alzheimer’s Society visited us and I remember talking to her GP about whether she should be prescribed Aricept, but that was that.
Looking back, were there any signs before that she was in the early stage of dementia?
Yes, for what seemed like a long time she was becoming increasingly unstable and often horrible to be with. It was like living beside a volcano. Suddenly, out of nowhere, there would be a stream of anger and abuse. I began to keep my children and my partner away from her. She became politically militant, which was out of character – her causes were good but her expression of them was irrational and she couldn’t tolerate the slightest hesitation or dissent.
I could see, also, that she was finding herself pretty horrible too. She was lonely and unhappy. She would go outside early in the morning and howl. She herself initiated one GP consultation because she couldn’t understand why she was shouting at people like my brother, who she loves. Shouting at anyone else didn’t bother her so much: she just thought they were wrong. This was a pity when many of them were neighbours, relatives or family friends of long standing – just the sort of people one would be glad to have around to sweeten the last years of life.
What happened after diagnosis?
Very little. We were so ignorant about what lay ahead and it would have been so helpful to have someone interested, knowledgeable and professional to talk to from the moment of diagnosis. From then onwards, it was self-help and crisis management. When things got appalling she would be referred to the community mental health team (if we were lucky), an appointment would come through several months later, by which time I would have found some strategy to cope and she’d be discharged again – until the next crisis. I don’t blame the personnel involved; I blame a system which can allow such variation between health trusts. There’s a post code lottery in dementia care and there shouldn’t be. The fragmentation of services in the otherwise lovely small town to which Mum had moved was shocking – and was therefore wasteful as well as ineffective.
How did you tell other people and what was their reaction?
Initially I was deeply distressed, almost entirely for her but a little bit for me as well. I didn’t want to be Mum’s primary carer and felt somehow as if I’d been standing in the wrong place when the music stopped. My partner and my children were wonderfully kind and supportive however and I think I can honestly say that almost all my distress was for Mum. The formal diagnosis began to focus our minds and this was a good thing as I could begin to think constructively and stop blaming Mum for behaviour that was beyond her control. Other people have almost invariably been understanding and helpful.
What were the main challenges you faced and when did they happen?
Too many to list. I can’t bear the thought of Mum being admitted to hospital and to be separated from the support and care around her (family can be excluded by the visiting hours system). That’s why I joined my friend Nicci Gerrard in running John’s Campaign which fights to allow carers to stay with their loved one when they go into hospital, even outside of visiting hours. Caring is hard enough without an institution putting barriers in the way of its continuance through times of medical crisis.
Apart from that, the constant challenge is to understand how the world appears to Mum and respond appropriately. My role is to organise whatever support is needed to enable her to have as good a quality of life as possible, even as she is increasingly restricted by the progression of the illness and advancing age (she’s currently 92).
I am frequently wrong-footed by the unpredictability of Mum’s moods and sudden changes in her overall capability. I’m the sort of person who makes a plan and sticks to it so I’ve had to learn to become much more flexible. I also need to learn to not take everything to heart. Mum can be charming, loving, sensitive and appreciative, or hurtful, manipulative, angry, jealous. I don’t always cope well with this and if I am not coping well, then it’s also likely to be tough on the other people in my life.
Have any services made a difference?
Mum is reaching the later stages of her illness now and has recently moved into a dementia specialist nursing home near me. This has been traumatic but is basically good (unavoidable really – the alternative would be that she would have been sectioned). The home provides her with 24-hour care. I am there for 4-5 hours every day and it’s such a relief to know there’s somebody sympathetic and understanding on hand that I can talk to. I feel that we are working as partners to try to help Mum.
Earlier this year, I did finally get help from a dementia specialist nurse and then the community psychiatric services and this was very welcome – I would have liked it earlier. Usually, however, it has been a particular individual within a service rather than the service itself that has made a positive difference. I’ll always bless the social worker who took time to understand Mum and who then supported her in “positive risk-taking”. But she soon moved on. I usually felt I was fighting the social workers rather than being supported by them.
The main source of tension was my determination that Mum should retain her freedom to roam even when she sometimes got lost and upset. A named, contactable and understanding GP was a great support even though, again, there was little she could actually do.
Have any particular products or gadgets made life a bit easier?
A big-button phone and multiple easy-to-read lists of key numbers was a help when Mum could still make calls. It would have been even better if the phone had been sufficiently resilient to withstand being regularly chucked on the floor in frustration! If someone could invent a hearing-aid finder, that would be worth much fine gold to me.
An utterly simple, completely indestructible bedside lamp would also have been a lovely thing for her. I was slow to see the point of the GPS tracker and couldn’t really get it to work in an area with poor mobile reception. I do however think that could have been potentially a game-changer in Mum’s adventurous days.
A friend made Mum a personal song book and I’d like to have done the same selecting personal favourite poetry. However, the best thing, above all, that Mum has ever been given is a bright pink teddy bear from her great grandchildren last Christmas. That teddy is my best friend as well!
As for me, books have been essential to my understanding of Mum’s illness. Contented Dementia by Oliver James was my initial break-through and Sally Magnusson’s Where Memories Go took me further, sometimes painfully. Teepa Snow’s videos are brilliant though I can see that her mode of presentation might not be to everyone’s taste. And I always have a notebook and pencil in my bag or by my bed so that I can write down what is happening, partly to get it out of my system but also to reflect on it.
Has your experience of living with someone with dementia changed your perception of it?
How could it not?! It has also changed my understanding of big things such as the nature of identity, the workings of the brain, the power of emotions. And other matters, such as my own limitations, and the strengths and weaknesses of relationships.
What lessons have you learnt and what advice would you pass on to other families?
Mainly that you can’t do the caring all yourself (and shouldn’t even try) but also that no one else is going to do it all for you, certainly not in the individualised way that is so important to such an intensely personal illness. When someone living with dementia moves into a care home or similar, they need their family and closest friends even more than ever.
I’d also like to say that Mum and I have had lots of fun, especially when I used to take her horse riding or out on the boat. Dementia needn’t stop anyone doing anything if their body can still manage it and if they have the necessary personal support. People living with dementia should be encouraged to do as much as possible – though I have found that getting Mum over-tired is a very bad idea and I have to keep remembering that her mental processing speed is slow and can easily get over-loaded. Probably the most useful piece of advice the community psychiatrist ever gave us (and I’m not being sarcastic) was drink lots of water, actual plain water – like children should do in a well-run primary classroom.
Beloved Old Age by Margery Allingham and Julia Jones, published by Golden Duck, is on sale now £9.99.