We provide support to people in our community living with a mild to moderate dementia diagnosis, as well as their carers. Paul attends our Musical Memories singing group with his wife Jill. He was diagnosed with behavioural variant Frontotemporal Dementia (bvFTD) in December 2016 and Jill now cares for him. She also attends our dementia Carers group. Before the Coronavirus pandemic, Paul regularly went walking with a Link Age Southwark volunteer ‘befriender’. 

Jill talks to us about her and Paul’s experiences with their dementia journey: 

Could you tell us what led you to seek advice from a doctor, and what it was like for you and Paul when he was diagnosed with dementia?

I first noticed something was wrong in 2015 when we took on the London to Brighton challenge; walking 100 kilometres in 24 hours for charity. Paul had agreed to do it with a group of friends but didn’t seem to realise the enormity of the event and had not started training. So I agreed to do it with him and organised our training and sponsorship. Eight months after we crossed the finish line at the Brighton racecourse, Paul was signed off work and diagnosed with stress and masked depression. He never went back. He was only 59.

Through dogged badgering of the GP and psychiatrists, we finally got a comprehensive memory test carried out and an MRI scan; the results were shocking. Paul was diagnosed with behavioural variant Frontotemporal dementia, formerly known as Picks disease. We were told that it was life limiting, (on average 8 years from diagnosis) and there were no treatments currently available to slow down the decline.

What have been the biggest changes in your lives since Paul received his diagnosis?  

At first Paul was philosophical about his future. He felt he’d had a good, happy and fulfilling life. Besides, he didn’t feel there was much wrong with him. I was soon to learn that he was losing his insight and emotional feelings fairly quickly.

I, on the other hand, was in total shock; angry, sad, bewildered. All the feelings of loss and bereavement, but he was still around. I now know these feelings are all part of ambiguous loss. The prospect of my partner of 35 years was going to change beyond recognition, potentially become aggressive (fortunately he hasn’t), develop strange habits and embarrass me in public, or be unable to communicate, was daunting.

We know that COVID-19 will have turned things upside down for you both yet again. How have you coped with the pandemic affecting your everyday routines?

We were already used to isolation; our friendship circle had seriously diminished. Dementia is a disease that frightens us all and many people don’t know how to handle it, hence why it is easier to ignore people rather than face something potentially awkward. I knew that I would not cope being locked in 24/7 if we had nothing for Paul to do. He is rather obsessed with exercise, it helps keep him calm. I bought a mini trampoline, a garden swing ball set and watched as he walked/ran round and round our garden creating a worn dirt track in the lawn.

With a view to future easing, I turned a Nordic walking pole into a 2 metre distance stick and gradually our son and a family friend took him out for walks, keeping them both at a safe distance. Sadly all other activities have stopped. No Link Age Southwark volunteer ‘befriender’ walk, no dancing at Rambert, no Daffodil Cafe. 

And then there was Zoom...a small lifeline in our new normal. Amazingly, we have been able to dance with Arts 4 Dementia, sing with Link Age Southwark’s Musical Memories group, and I have had regular chats with the carers groups from Link Age Southwark and the Alzheimer’s Society.

Link Age Southwark staff have been really generous with their time, checking in on us from time to time and dropping off puzzles and activities for Paul.

There is a lot to consider when facing a dementia diagnosis. What advice could you give to anyone who may be at the start of this process?

My advice to anyone is to take your time to digest this devastating news. I think it probably takes at least two years to come to terms with the bereavement and adjust to ‘living in the moment’. I was advised to prepare for the worst and hope for the best, which is very good advice. Remember each disease is unique to the person, the worst symptoms that inevitably are written about online, may or may never happen to your loved one.

Above all try and keep a sense of humour. Paul has got up to all sorts of antics over the years as he regresses into a childlike state. The lack of filter has lead to some interesting conversations with strangers. Fortunately he wears a badge that says ‘please be patient I have dementia’!

If you find the future too bleak to contemplate, try and embrace life in this moment and don’t think too far ahead.

Since the restrictions were eased in the summer, Paul has been able to resume his walks with his Link Age Southwark ‘befriender’, David, keeping a safe distance with the walking pole (see photo above). Jill hopes that future restrictions will not force them to stop again.

Read Jill's full story here