Real stories

Stuart and Carol Jennings: Reflections from a carer

A passion for dementia research

Carol’s experience of dementia – a disease that had appeared several times in her close family – led her to question contemporary beliefs about its cause. In the 1980s, genetics weren’t thought to play any role in Alzheimer’s; that it was purely an illness of the unfortunate elderly. But Carol, my wife, thought otherwise.  

She committed to supporting research into the disease and coordinated her family members to take part too. She herself went to London annually for MRI scans, blood tests and cognitive testing.  

Carol and I became passionate global advocates for dementia research, raising awareness and championing progress. Alzheimer’s Society have even recognised her contributions with the ‘Carol Jennings Fellowship’.

During her 30 years of involvement with dementia research, the first known genetic cause was identified. Although Carol could have a test to see if she had the gene, with no treatment available, she chose not to know.  

Early diagnosis and anxiety  

Carol was diagnosed with ‘mild cognitive impairment’ just before Christmas 2012. It would later evolve into dementia.  

It became clear that Carol's wellbeing would be my primary responsibility. The weeks after the diagnosis were difficult for her, she fully understood, at this stage, what might lay ahead and was upset, anxious and afraid. 

I quickly came to realise the extent to which anxiety and dread play a large part in living with dementia. A world where the person felt in control, comfortable and surrounded by familiar faces begins to dissipate.  

I was continually impressed by the bravery Carol exhibited – which I've since seen again in others who find themselves in this new world.

These early stages are the time to get things in place for the journey ahead.  Sorting out finances, getting Power of Attorney in place, and identifying support networks so you, as carer, have a sense of support and control.  

I found wonderful support from our GP, social workers, care agency staff and Admiral nurses; not that I needed them initially, but I discovered where they were, ready for when I did.  

In the milder, earlier stages of dementia, Carol and I began to discuss her expectations of care. We’d start at home and then, if necessary, seek professional support at a good care facility. The plans we then made enabled me to keep Carol at her home to the very end. I had taken her hand in marriage and I held her in my arms as she took her last breath at our own home.  

The journey becomes increasingly demanding  

The progress of Alzheimer’s was once described to me using an allegory of a sandcastle.  Little bits of sand trickly away gradually and often imperceptibly but there are times when unexpectedly larger chunks fall off the castle because of this gradual consistent trickle.  

This is how the transition from early to later stages was experienced by me.  

During the pandemic, Carol became ill and was rushed into hospital. She was placed in an isolation ward where no one could visit her and left permanently in bed. I wasn’t allowed to visit and all my hopes, plans and promises seemed to crumble into dust.  

After seven days confined to bed in a side ward, she had lost the ability to walk, negotiate stairs and struggled to feed herself. It was lovely to get her home, but it took me a few weeks to get her back to where she was before the hospital admission.  

From 2021 through to her death in March 2024 the escalation of her condition was frightening. She started having major seizures that robbed her of any mobility, incontinence became an issue, and eventually ended any speech apart from the occasional yes and no.  

Because Carol had continued to be so involved at the Dementia Research Centre, I was instructed by her to ensure her brain was donated to medical research, come what may.  

I amazed myself by coping with the thing that I most dreaded. I saw not the issues rather the woman that I loved right to the end.

So, what have I discovered as a carer?  

• The need to walk away, if safe to do so, into another room for a short break when things get fraught.
   
• To focus on the things that empowered me, not on those that drain me.  It was difficult, but I focused on our good years together instead of our loss.  
   
• Self-care is essential, including periods of respite.  I fail my loved one if I neglected to do this.  
   
• The need to cultivate an in interest alongside the caring, because this can be helpful to overcome the sense of emptiness that followed her death.