Real stories

Hard lessons: Life in lockdown with dementia

I’m 64 but I behave like I’m still in my early 20s, according to my 28-year old son Daniel, who I have frequently embarrassed with my ‘Peter Pan’ attitude to life. 

I’m very lucky to live on the Glamorgan Heritage Coast with my husband Bernard, Daniel and his fiancé Chloe, and my mother Della, who has her own ‘granny annexe’. 

I was told I needed to be shielding during the long 15-week lockdown, and here in Wales we are currently under a 17-day ‘firebreak’ lockdown, which I doubt will be our last.

Sudden stop 

I’m a very social person and, prior to the lockdown, if I wasn’t out volunteering, public speaking or teaching for Alzheimer’s Society, Marie Curie, Age Cymru and others, I would be mixing with friends locally. 

The lockdown came upon us very suddenly and everything stopped. I’ve learned a very hard lesson. I needed all of those activities, they were a distraction from the realities of my illness and made me feel useful again.

As a consequence, I fell into a deep depression. In all honesty, this depression has dogged me most of my adult life, another stigma I once carried in addition to the fact that I had to come to terms with the guilt I felt about being gay. 

So life was hell under lockdown. Then along came Alzheimer’s Society with Zoom meetings and phone calls, which helped enormously in opening up the outside world again, but – and there is a big but – it’s not the same as getting out and being with people. 

Major challenge 

I know that, in addition to repeated short episodes of depression, I’ve lost many of my social skills and a huge degree of self-confidence. Most worryingly, I feel my dementia journey has been ‘speeded up’. 

I have had four very close friends who have died during the pandemic, two with COVID-19. It has been upsetting of course, but exacerbated by not being allowed to go to their funeral services. 

I have tried so hard not to watch 24-hour news coverage, allowing myself only the early evening TV news. But on some days I’ve failed miserably, and genuinely that has not helped. 

It was a major challenge trying to socialise with people outside the ‘family household bubble’ again after the first lockdown, which was surprising to me and my family, given the amount I loved being with people. 

Honesty helps 

My family have been a great support to me, but they have had the challenge of dealing with my mood swings. They’ve had no respite! 

We should never be afraid to talk about our feelings or ashamed of how difficult things can be at times.

It is our willingness to be honest about how we really feel that helps others.