On ‘Contented Dementia’ by Oliver James

I started reading this after a recommendation from a friend after I ‘went public’ with this blog. It’s exactly the approach I want to take with my husband, that is, how can I ensure the best standard of living for him? However, I have a few problems with it

First it is culturally in dramatically Daily Telegraph world. I’m a white middle-class cis het woman and I find the examples almost exotically middle-England. Maybe there’s another book with a more inclusive set of stories. In the meantime we’re left with men, on both sides of the ‘client’/ ‘carer’ divide who come across as self-entitled gits.

Secondly, it is aimed at older people’s experience of dementia. The principal advice in the book is: don’t upset your loved one with new information, find a theme from their active memory for them to cotton on to, with a supplementary ‘health theme’ to explain why they shouldn’t do certain things. We’re advised to start as early as possible but my husband is still capable of absorbing some new information and creating new memories. And he still has some independence. I’m not in a position to protect him from new information, even where he can’t deal with it.

Thirdly, many of the successful examples are women of an age and background where they were not primary wage earners. The book discusses dealing with the fear experienced by people disabled by dementia. But a man (who has grown up fundamentally knowing that he is In Charge must be Right) angrily insisting something is the case when it’s not is hard to deal with even when you know where it comes from. The advice is to avoid the person reaching the point that they become angry, but taking over every life decision for an active person doesn’t happen in a day. And frankly my husband doesn’t believe me most of the time when I say ‘x is all sorted out’.

The book is also very dismissive of the effort needed to support your loved one’s view of reality. I stepped aside from many futile arguments long before diagnosis, but it takes a lot of effort to nod along when your loved one says things (especially to other people) that are not the case. I understand the need not to insist on the truth when it supports his happiness, but it’s just as exhausting.

I think it’s clear this book isn’t for my specific circumstances. At one point they advise the Carer to acquire a ‘New Project’ to give themselves something else to focus on and the picture is very much of a single person doing all the caring. Of course I don’t know what is going to happen in the future but I very much hope I will be one among several helping my husband live the best life he can. And I expect to be working full time for many years to come.

However, there was useful stuff here. ‘Feelings are more important than facts’ needs to be embroidered on my pillow. I am reminded I need to listen more and do my best not to correct or disagree. And getting other people to think like this is also a task for the future. This was my first proper bit of reading post-diagnosis. There will be better books but learning more is always good.

On diagnosis

We had a few hiccups before diagnosis. I had noticed problems around 2013 but hoped they weren’t significant. Things became noticeably worse after my husband was made redundant in 2017and there’s no doubt in my mind that he was also depressed at this point, although he didn’t accept it himself.

In 2018 I took him to the GP and he was referred for an MRI and extensive tests in a specialist clinic. Nothing was picked up in the MRI and the clinic’s diagnosis was Mild Cognitive Impairment – ‘he just needs to get about more and drink less’. In 2019 I went back to the GP, and he had another MRI and a referral back to the local clinic. Thanks to the suggestion of a friend, I also found out about the Cognitive Disorders Clinic at the National Hospital for Neurology. I asked for a referral there (his GP hadn’t heard of it) and thanks to an administrative error, this actually came before the local referral.

This was where the actual diagnosis happened. I don’t blame anyone at the general hospital where he had his MRIs for missing shrinking in his hippocampus – it’s on the small side, I believe. And at the National Hospital they specialise in this type of diagnosis. But it’s worth bearing in mind that even a specialist clinic can get it wrong.

My husband has been amazingly brave since his diagnosis, proactively telling people, but there’s no way it isn’t hard for him and he’s still on the road to acceptance. I had already come a long way through it by then – the grief engendered by his symptoms started long ago. What it has meant is access to help, support and services has begun. Just as importantly, I can try and learn what will make me a better partner and carer.

On presents

My husband is perfectly well aware of when Christmas and my birthday are and always wants to buy me presents. I’d be happy without them, but I appreciate why he wants to, particularly when he has lost so much agency otherwise.

Leaving aside the appropriateness of the presents themselves, we now have a problem, as generally I’m the only person who can find anything. In the run-up to my last birthday, he kept losing them. I ventured ‘I didn’t see them properly, but there was something in your sock drawer’. Him: ‘Oh you’ve seen them now, that’s the surprise spoilt’. And of course they moved again so that neither of us knew where they were.

The day after my birthday I found them in a bag on the kitchen table. I brought them to him to give to me. At Christmas I asked a friend to help him wrap them but I had to tell her where they were. I still appreciated the effort he took to choose them.

As I say, I don’t need any presents from him. But I don’t know how to give him back the moment of ceremony and satisfaction he had before.

On music

My husband is a talented musician and songwriter and it’s been hard watching his capacity deteriorate over the last few years. I don’t know if his actual musicality is affected or if it’s just his concentration, memory and (when it comes to playing) motor skills. Loss of confidence, which became serious after redundancy three years ago, is definitely a factor. He still sings in two choirs, where his diagnosis is known, but it’s fair to say that he doesn’t always keep up.

Last week we attended a Burns Supper at which it’s customary to perform musical or literary numbers. He hadn’t performed since the time he made several false starts and broke off unable to sing or recite his own work from memory. I opened up some sheet music on the bus over and he started singing it. I joined in and we performed it together at the Supper. It was so lovely to hear him sing again and made me want to find more opportunities which could support him in music. He was insulted at the thought of the local dementia-friendly choir so it’s a search for the right niche

Why this blog

My husband was diagnosed with Alzheimer’s last year. He’s currently 61, I’m 47. I first noticed things weren’t right about five years previously and it took a few false starts to get the diagnosis. He’s told a lot of people himself and this year he said he was happy for me to talk about our experiences openly online

Early onset Alzheimer’s with your partner has peculiar aspects of its own (not downplaying the impact of any form on sufferers and their carers). He’s a young 61. I’m younger. We’re put into a mother-child relationship I loathe (I’ve never wanted children) and which is complicated by the fact that he knows perfectly well he’s an adult, nobody tells him what to do. Plus he’s an ex-punk and old enough to have imbued certain alpha-male attitudes. We still love each other like we always have.

So I’ll be adding thoughts as I have time, will try and maintain our dignity and not turn it into a moan-fest. Hope it’s useful.