Bill and Jo sat on their couch, smiling and holding hands

How my wife's early dementia diagnosis gave us relief

When Bill noticed something wasn't quite right with his wife, Jo, it was a struggle to get her to seek help. Now Jo has been diagnosed with dementia, Bill reflects on why finding out was the best thing for the couple.

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.

A photo of a framed picture of Jo at her graduation

Jo had a very successful career

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.

Jo and Bill sat in their garden, looking into the distance

Bill was determined to get Jo a diagnosis

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.

Bill hugging Jo, kissing the back of her head while she looks forward

Bill struggled to access the right support following Jo's diagnosis

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.

Our dementia advisers are here for you.

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.

An image of a framed photograph of Bill and Jo at their wedding

'She might not know I’m her husband, but I know she’s my wife,' says Bill.

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.

Bill with his arms around Jo while they both laugh

The couple continue to find joy in their lives

Talking to your GP about dementia

If you're preparing to talk to your GP about memory problems, read our advice to help you make the most of your conversation.

Read more
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My wife Gail was diagnosed with alzheimers at the age of 58 after a couple of years when things weren't right. The diagnosis transformed her world view very negatively. We had agreed to seeking diagnosis because we thought this was the way to access treatment, little knowing how ineffective that was. Six years on the illness is well advanced but I often wonder if delaying the diagnosis would have given her a longer period of normal life.

Your story is very inspiring, determination on your behave has help you get your wife the help she needed, Most people don't have the fight in them,and there get left behind. It would be grate if everyone get diagnosed early and given all the information. Some families does not recognize the early symptoms and that amounts to delay in diagnosis. Our G.P's need to do more.

Very informative and really supportive :to newbies in this situation - an inspiration to us-‘ all. I know there are many more partners out there in similar circs. , but this story comes from the heart
Thank you so much for sharing - it has made my tasks ahead less daunting .

I find this information reassuring
I am recently diagnosed with Alzheimer’s and wish to know everything I can about how to manage it. Advice and information would be gratefully received

My husband Robbie and I got to the end of the journey 12 months ago. The thing that I learned which was really important was that he always recognised my voice, it so important to keep talking and telling them that you love them, the care in your voice, never forget that. Wish you joy and happiness together.

Yes it’s always inspiring on how others cope with similar problems . Tangible daily changes in effected persons remains a mystery & their reactions .
How & what is the mind going through & do they realise the realities .
Guess a lot o& research & books needs reading !

Thank you for this wonderful account. My husband was diagnosed with Alzheimer’s just before Christmas, although we had guessed two or three years previously that something wasn’t right. He is 77 and we have been married 55 years. I have found it quite difficult sometimes. My family live great distances away eg America and neither of us drive but I have found this story has strengthened me somewhat, many thanks.

Thank you Bill and Jo for sharing your story. It was reassuring and inspiring to see other people coping in the same situation as ourselves.
We have a very similar story.
Taking two years for a diagnosis, and being very poorly treated by a locum psychiatrist in elderly mental health, although my husband was only 63 at the time. We are now on a trial for Alzheimer's at Southampton hospital. if it wasn't for the trial we would have absolutely no input from any health care professional. Although gratful for the trial we have no help with day-to-day and because we are "under the hospital" they have discharged us from elderly mental health and the memory clinic.

My husband was diagnosed just over a year ago though it was five years ago I noticed a change.He says he’s perfectly ok the doctor got him to go for a scan using headaches my husband had as then way forward he was diagnosed with Alzheimer’s but said it’s rubbish. The doctors sent us to the memory clinic he took the test 5 out of 40 they put him on a tablet then discharged him.It was over to me to care.I cannot get any help he will not allow anyone in the house I cannot make a telephone call without him wanting to listen, we go everywhere together my world is getting smaller no one can phone me with help.I cannot ask for an assessment from social services as there is nothing wrong with him. He was the most loving husband who always gave me space and definitely put me first we have know each other 60 years and married for 55 years I have had the good years together he’s the world to me I just feel helpless that I am not doing enough to care for him.

Thanks for your comment, Joyce. We're so sorry to hear about the difficult time you're going through.

We have an article on how to offer help to someone with dementia who doesn’t want it, which may be of interest: https://www.alzheimers.org.uk/blog/how-offer-help-someone-dementia-who-…

We also have some pages on our website about denial and lack of insight that you may find helpful: https://www.alzheimers.org.uk/get-support/help-dementia-care/what-diffe…

There's a practical guide for carers, which you can download for free or order a copy in the post: https://www.alzheimers.org.uk/get-support/publications-factsheets/carin…

The best way to get information, advice and support that's suitable for you and your husband is through our Dementia Connect support line (0333 150 3456). One of our dementia advisers will listen to you and learn more about your situation, then give tailored information, advice and support. You can find out more about the support line (including opening hours over the upcoming Bank Holiday) here: https://www.alzheimers.org.uk/dementia-connect-support-line

I hope this is helpful, Joyce.

Alzheimer's Society blog team

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