Real stories

The tipping point for my wife needing a diagnosis of dementia

I met my wife, Diane (Di to almost everybody except her mother!) when she had just qualified from college in 1972. We became engaged in 1973 and married in 1975.

Di was a primary teacher for all her working life. She taught infants, ideally Year 2.

Children and parents alike warmed to her outgoing personality.

Di became renowned for her skill with young children - comforting those who found real school too hard whilst getting the best out of the high achievers.

Family connection to dementia

In the mid-1980s, Di’s father, aged around 67, was diagnosed with dementia. He went into a care home in 1989 and died the following year.

When her father's death certificate read ‘Alzheimer’s Syndrome’, none of the family had heard of it.

It is hard to believe now but it was only about that time this form of dementia started receiving publicity.

It was then that Di’s mother told us that her own father-in-law had also shown many signs so typical of Alzheimer’s before he had died in 1964.

Di was paranoid that she would develop Alzheimer’s and, in the early 1990s, went for tests – both NHS and private – but was reassured that she had no symptoms of the condition.

Showing signs of dementia

It was in 2005 that the first early signs of Di’s dementia (but only visible in retrospect) began to appear – conversations totally forgotten; decision to give up teaching to become a teaching assistant in 2007; repetition of questions and many others that the families of people with Alzheimer’s will recognise.

Friends and work colleagues didn’t comment at the time because, somehow, ‘it wasn’t right to’!

Di used to have to be reminded of parents who she’d arranged to meet after school and, as a teaching assistant, she often forgot what the teacher had asked her to do.

Reaching a tipping point

A tipping point was reached in 2013 when a doctor friend told me, ‘You need a diagnosis for Di!’.

We started the process, but it took over six months to get this diagnosis, initially of ‘mild cognitive impairment’ followed quickly by ‘early Alzheimer’s’.

Meanwhile, Di was found to have a small tumour on one breast. Thank goodness, this was caught at an early stage, with an operation within a month of first diagnosis plus radiotherapy a few months later. 2014 was not the best of years!

Over the next three to four years, Di’s memory steadily worsened. In reality, I probably lost my soul mate then.

Gone were the endless stories of school, life in general and her anecdotes, most of which I knew anyway but always laughed at again.

Di’s ability to undertake virtually any multi-step task disappeared, so I started cooking, washing clothes, ironing and making coffee. Di became incapable of executing the steps necessary to find out what drink guests wanted, put the tea or coffee in cups and boil the water.

I photographed all her clothing so I could say, ‘What about these two together?’ and labelled drawers, all the things you’re advised to do when someone you love has Alzheimer’s.

Changes in behaviour

Then, in July 2018 with Di aged 67, everything changed!

You’re told that these changes are gradual, but Di’s wasn’t.

One day, Di was calm and we had a loving existence; the next she was agitated and, over time, prone to be aggressive.

Very quickly she ‘wasn’t married to me’ and ‘didn’t live in this house’, which had been our home for 31 years. She often wanted to go to bed around 4pm but would then get up at 11pm and stay in the sitting room all night.

Seeking additional support

Di wouldn’t wash or change her clothes and got aggressive with me when I tried to persuade her.

Carers came in, against Di’s will, to try to persuade her – some were successful, others not!

In February 2019, I persuaded Di to go to our local care home so that I could have some respite.

She went once for about five hours but for the second visit, she was resistant, not wanting to get in the car or walk. I finally persuaded her, after first asking my supportive daughter Rachael to come from work to help.

Holding hands, together

Di has continued to deteriorate mentally but is reasonably good physically.

She can’t really talk but makes a noise as if she is trying to. Just occasionally, I get a word or two, like an audible ‘You’ when I ask what she’s looking at or ‘Oh gosh!’ when I told her that she was 70 next week! But words are rare, and she often doesn’t look at me or respond during my three-times-a-week visits.

I hold her hand, tell her what I’ve been up to and sometimes just sit there with her. I do bring her chocolate treats, which she can sometimes feed to herself although more often she wants me to.

She doesn’t appear to process sight well and, I believe, hallucinates. She now can’t walk, feed herself, wash and clean herself – in fact, her wonderful carers do virtually everything for her.

People whose loved ones have been admitted to care and nursing homes often say that there’s a crunch point when they know that they can’t cope anymore – I understand that feeling.

If you are worried about memory problems, we are here for you.

Call our Dementia Connect support line advisers on 0333 150 3456 - they will listen to your situation and provide dementia information, advice and support.