The unseen toll of worry

Beth BrittonD4Dementia

Earlier this month was World Mental Health Day, an awareness-raising event designed to increase the profile of looking after our mental health.

I’m a firm believer that just as we all have physical health problems, either sporadically or continually, so mental health problems are just as commonplace. I’ve seen the most mentally strong person floored by life-changing news – like redundancy – and life’s events – like bereavement – leaving a person bereft.

The problem with mental health problems is that they are rarely seen – they aren’t obvious like a broken leg. In that respect, they have much in-common with dementia, which is also largely unseen and still stigmatised to varying extents. They also can’t be easily treated like many typical physical illnesses, for example a cold, which you can take a paracetamol for, rest a bit more with, and feel better within a few days. For some people, mental health struggles are lifelong.

 

I’m a worrier (and I’m not alone in that)

I’m a self-confessed worrier. I try my best not to allow my worries, fears and anxieties to overwhelm me, but in acute situations they sometimes get close to doing that. The coronavirus pandemic has certainly made my predisposition for worry more acute, and I’ve come close to a panic attack on one occasion.

I think we all wonder if our mental frailties are just us overreacting to something. So, it really resonated with me to hear Suzy Webster (whose caring during COVID experiences were featured in my ‘Family carers and the coronavirus pandemic’ blog), talk to MacIntyre’s recent Dementia Special Interest Group about how she worried when the coronavirus pandemic first hit.

Suzy’s mum was having contact with around 15 different carers on a regular basis, which was going to mean a lot of mixing with different households at a time when we were all being told to isolate. Suzy took the decision that the risk to her mum (and her wider family who all live together) was too great, so she paused these care worker visits and took on caring for her mum full-time herself.

 

Pandemic worry

It’s widely acknowledged that people with dementia have been disproportionally affected by the pandemic, and I one hundred percent agree with Suzy, who locked down her house before the government officially ordered lockdown so that she could protect her mum.

The worry, stress and strain caused by the pandemic is laid bare when you listen to someone like Suzy talking. Dementia gives you enough fears and worries on its own, then you add in the fears and worries that other health conditions often contribute, then you add in struggles to access health or care services, and then you add in coronavirus. That is a huge amount to cope with mentally, and that’s before you consider the physical effects of full-time caring for a loved one who needs significant support that could include help with eating, using the toilet (or incontinence) and mobility (hoisting).

I remember messaging with Suzy when the pandemic first hit, wondering how she was going to approach keeping her mum safe. My (almost) 82-year-old mum lives with us and I was also pregnant with our second child at the time, so as far as I was concerned coronavirus was a huge risk to our household and we had to isolate effectively. Like Suzy, I wasn’t going to wait for the government to say we needed to!

 

Worry doesn’t just go away

Fast forward to now, and since restrictions were lifted in England the messaging has been very much about going back to ‘normal’. Indeed, some people seem to think the pandemic has gone away. But what of those of us who still worry? Where do we fit into society now?

My mum’s dancing has just re-started, but she doesn’t feel comfortable going given that it involves inside socialising with many different people. She’s had all her jabs, but life isn’t normal nor does it feel normal (as the stream of COVID-19 emails from our daughter’s school is testimony too). So, what does ‘living with’ coronavirus really mean?

Many people with dementia are finding the daily threat from this virus is far from easy to live with. They feel vulnerable, they may have cognitively and physically declined during lockdown (making a return to previous activities impossible), and their family members and friends may be feeling exhausted from an acute lack of respite services and other support mechanisms (that aren’t exactly plentiful at the best of times).

Many families are mentally rung out from worrying about loved ones who live with them (like Suzy’s mum and my mum), or loved ones who don’t live with them and who they might want to see but don’t want to risk making inadvertently ill. Yes, you can test yourself and wear a mask (and I’m all in-favour of both), but we aren’t in pre-COVID times and there is no point pretending otherwise.

 

Coping with worry

I think acknowledging how you feel, taking the extra precautions you feel are right for you and your family (which for me include only socialising outside, although for some reason I worry about explaining that to others), and finding people who understand how you feel to talk too are all really important strategies for coping with the additional worry coronavirus has caused so many people.

I don’t think that bottling feelings and emotions up is ever helpful, and doing so ultimately causes far more stress on mental health than finding an outlet. If your outlet isn’t talking to a sympathetic person, consider meditation, exercise or even just committing how you feel to paper by writing your feelings down.

If you are supporting a person with dementia, you may feel you don’t want to burden them with your worries, so for you finding a neutral outlet – be it a family member, friend, neighbour or through calling the Admiral Nurse Dementia Helpline or the Alzheimer’s Society Helpline – is really important.

When you’re tired from caring, you may worry more. When you’re living with dementia and working so incredibly hard to make sense of the world around you at the best of times (never mind COVID times), you may worry more. Understanding that, and in a sense anticipating these worries, can help you to kick start whatever coping strategy works for you before your worries turn into something far bigger and more serious for your mental health.

Worries aren’t always rational, and our reactions sometimes likewise. But knowing you aren’t alone does, I think, help.

Until next time…

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook