David’s Story

My story so far – David Marshall (April 2025)

One of the cruellest diseases we can experience is Dementia. Unlike other diseases it takes away the very soul of a person. They can become almost if not unrecognisable. This is not to take away from other diseases that have dramatic effects on the body some of which can also take away abilities and personality.

Dementia is an umbrella term for progressive conditions affecting the brain, the most common being Alzheimer’s, vascular Dementia, Lewry body Dementia, Frontotemporal Dementia, mixed Dementia and some rare forms of the disease.

What is it like to live with someone with the disease? Difficult to answer due to the variations of both the illness and its progress. Since my wife’s diagnosis I have met several people caring for their partner or relative and each one is different and at different stages so there is no single answer.

In my case, my wife has been diagnosed with a rare form of Alzheimer’s, Logopenic progressive aphasia. While she can manage her daily personal care, her speech, language, short/long term memory and abilities are affected.

It’s difficult to know when she started. I think it was around 2021 following the end of lockdowns. Prior to this we spent a lot of our leisure time both playing instruments and performing to groups. After lockdown, I noticed her inability to remember words of songs, that we had sung at our gigs as regular numbers, without the words and chords in front of her. I then noticed that she wasn’t reading books which was odd as she had always had a book on the go. Gradually her speech became odd, and she incorrectly named things. I went into denial and assumed it was just a transient issue. After a while our children and friends started asking me if there was anything wrong with her and I had to face up to the inevitable.

The first hurdle was to get her to accept she had a problem, after all, until you recognise a problem, you can’t do anything about it. Once we overcame this the first call was to our GP who arranged blood tests, MRI brain scan, followed by a memory test. The tests indicated the early stages of the disease, but this was just the start, we needed to see a neurologist. Impossible; the wait time was incredible.

Eventually we had an appointment with the NHS psychiatrist. He arranged for her scans to be evaluated and identified her condition as Alzheimer’s Logopenic variant.

Being a progressive disease, she gradually became unable to take on tasks such as cooking from scratch and we were beginning to live on ready meals so I took over the cooking, and although she continued shopping with a list, gradually couldn’t identify items. I became the domestic part of the household.

Her condition has steadily declined and although she continues to look after herself her memory and speech has deteriorated. She asks the same questions repeatedly.

To simplify our daily lives, I keep things as routine as possible as outside this she becomes anxious. Activities that are not undertaken on a regular basis can become an issue with her constantly asking what, why, when etc and not accepting or understanding the answers.

Her ability to recognise friends has almost gone and if we visit, or they visit, she will remain quiet and when they leave ask me who they were. Her ability to name our children and grandchildren has significantly reduced although in general she does recognise them when she meets them.

Events and dates are almost impossible for her to remember or recognise like birthdays, Christmas, Easter etc.

Recognising items is a nightmare as she calls so many things ‘a ship’ and I must try and identify the subject so I can understand what she is saying.

It’s not possible to have a conversation as her memory doesn’t allow her to understand and keep up with the topic.

On the positive side, apart from being able to look after her personal care, she does have a contented outlook. She will spend time playing games on her ipad (initially this bothered me, but I came to realise that if she wasn’t doing this, she would do nothing). She is still active and enjoys going for walks and is still good at playing bowls, both short mat and green bowls, and long may this continue as it is an activity we can continue to enjoy together.

I found early on that in company I would tell people of her condition which helped enormously as they would then treat her as ‘normal’ and accept the idiosyncrasy. This was great comfort to me, and I am sure to her.

How am I coping with the situation? I would love to say that I have adapted to the change and that things are all good, but sadly that’s not the case. I am coming to terms with it and adapt as far as I can to enable us to have a fulfilling life. I must take each day as it comes as we have good and bad days. Patience is important and only fight issues if they are important otherwise agree.

I am a registered Carer with Carers’ Support East Kent and in contact with various groups that cater for both Carers and the patient. Some of this is advice and some are meetings. I am also a member of The Rare Dementia Society which give help and advice and a way into professional services and the facilities they can offer. Sadly, most of the time its only advice that can be provided. Like many other services they are vastly overstretched, so patience is the key to waiting for any specific help.

At present I can leave her at home alone and this does not cause her any issues. Although I will tell her where I am going and what time I’ll return. I carry a ‘I am a Carer’ card in case of an emergency.

The future? Watch this space as it’s not possible to predict the progress of the disease and where it may go, so I will continue to keep things as normal as possible for as long as possible.

Do I have any advice? Live life to the full, if you can afford it do it now don’t leave it till tomorrow as you never know what’s round the corner. Make sure you have Power of Attorney and an updated will.