How my wife's early dementia diagnosis gave us relief

We're sad to share that, since Bill and Jo kindly told us their story, Jo died in early 2023.

Jo, my wife of over 50 years, was diagnosed with Frontotemporal dementia and Alzheimer’s in June 2020 at 66 years old.

She was always very clever and worked her way through the nursing ranks. Jo was named Student Nurse of the Year and Midwife of the Year at one point in her career. Once she left nursing, she started her own risk management consultancy.

Jo was eventually headhunted by the biggest insurance broker in the world! She travelled the globe in a very male-dominated business, so did well to reach the level she did.

Work was her whole life.

So in 2006 when Jo decided to leave it all one day - just packed up her laptop and left – I was shocked.

Realising something wasn't right

I recognised early on that things weren’t right with Jo. In 2018 we were visiting friends in Florida, staying a few blocks away from them. I got a call from them to say Jo was at their place. She was hammering on the door saying people had come to the house we were staying in, asking for money.

On the drive over I realised she had been seeing and hearing people, but I hadn’t taken it seriously.

This was the first real wake-up call that something was wrong.

In the film below, Bill talks about noticing the signs in Jo, and how getting a diagnosis helped them build a new life.

Seeking a diagnosis

For a year I tried to get Jo to see our GP, but she refused. In November 2019 we both went to see him for something else.

When Jo went to the toilet, I said to the nurse, ‘can you mention to the doctor that I think Jo may have dementia, and can he do tests?’

She did, and at the beginning of the appointment he asked Jo if there was anything she wanted to talk about. He told her, ‘your husband is worried about you’.

I wasn’t happy about that, I didn’t want to be the ‘bad guy’.

I explained her symptoms, which Jo denied. The GP did the usual tests, such as counting back from 100 in 7s, which she failed miserably. He said her memory wasn’t anywhere as good as it should be and she needed more tests. Jo was referred for a brain scan.

The brain scan was scheduled for the day before lockdown started. The clinic phoned and said they’d be closing that day, and to get there in the next 30 minutes or Jo wouldn’t be able to have the scan.

I had already been banging on the door to get it done and was prepared to do what it took to get Jo that appointment.

We received the official diagnosis over the phone in June 2020, when Jo was 66. We weren’t offered any information or advice. I was asked, ‘Is there anything you need to know?’

But I didn’t know what I needed to know – so how can I ask?

Challenges at the memory clinic

Between lockdowns we were able to go into the memory clinic to see a doctor there. I was very unhappy with her as she was very uncaring. She prescribed medication and it was a case of just ‘off you go now’.

As we were leaving, I said there was no way we would see that doctor again.

I made a complaint, so we were then able to see a senior consultant. She was a marvellous lady who was brilliant as she explained everything, like the different types of dementia and medications.

We were given leaflets and books, but despite this the whole process was very poor. I know many carers have not had a good experience but still, I am grateful for the memory clinic.

Coping with the process

They wanted to discharge Jo but I refused to let this happen. Jo now has a Community Psychiatric Nurse attached to her case, and they were able to get another CPN for myself when at one point I reached rock bottom.

I was severely struggling and got to the point where I fell to my knees on the kitchen floor and cried.

I realised I needed to pick myself up, or I could go into a downward spiral. I asked for a psychologist – this was the most valuable thing I got from the memory clinic.

I feel lucky I was able to get help, but luck shouldn’t have anything to do with it.

Now, Jo is still in denial about her diagnosis, she has no insight into her condition at all. We can’t say ‘dementia’ in the house, she gets upset. And she doesn’t know I’m her husband anymore, which is very upsetting.

She might not know I’m her husband, but I know she’s my wife. I’m glad she feels safe and comfortable with someone she doesn’t know she is in a relationship with, than unsafe with someone she does.

How getting a diagnosis helped us

A benefit of getting Jo's diagnosis, to me, is that I have found an inner strength. I draw on this special reserve I must have always had, that keeps me going and keeps me speaking for my wife.

For example, I will insist that people - especially medical professionals - speak directly to Jo and look her in the eye. If she cannot answer I can step in, but I will not have people talk about her while she is there. It’s about having respect.

In my heart of hearts, I knew long before it was confirmed that Jo had dementia.

The diagnosis relieved that stress. It was a fact, no longer a suspicion. I said to myself ‘it’s there right in front of you, now hang your hat on it’. We’ve been told, we must accept it and learn about it. We can breathe again.

With this all happening during lockdown, I was also able to do a lot of my own research.

This brought benefits such as keeping my own brain sharp, but also gave me the information I needed to be able to make good decisions and plan for the future.

We couldn’t live the same way anymore, but it didn’t mean it had to be all bad.

I found it liberating, actually. We were free, and no longer hiding from it. At first, we only told close friends and family, but then I changed my mind and wanted everyone to know so I announced it on Facebook!

I want to shout from the rooftops that we need to talk more about dementia.