Here we are, week…whatever of lock-down….and no real end in sight. It’s not a holiday, no-one is celebrating – so many things just cancelled – events, anniversaries, our regular calendar of socialising…all gone. So how are we all doing?
The thing that concerns me particularly, apart from the toll it is taking on the people we care for, is the toll it is taking on carers. People like us. Some of us are caring for someone in our own homes, others may be responsible for someone still in their own home, but apart from us – and then other with relatives in residential care.
I care for my husband, Mike, at home and I have many friends, colleagues, fellow travellers, who care for someone in another setting. We all face challenges daily, during this era of Covid-19. Very little of which is being aired in public. Talk of “heroes” is the dominant narrative. Probably because it is easier, “better”, to keep things positive. No-one is talking about unpaid carers, because no-one knows what to say.
Who is caring for you? Who is there to really support you? And what is “support” anyway – what does support mean, feel like, to you? We don’t necessarily have family – and some of us who do, don’t feel supported by them. We don’t necessarily have domiciliary carers either – and again, when we do, they can represent another source of concern, especially at the moment. So How Are You? REALLY?
Many carers experience mental health difficulties – I’m one such. Some pre-date our caring role, some develop as part of our caring journeys. Anxiety, depression – common, but no less important or distressing. The on-going demands of caring for someone with dementia and other health needs which can be individually demanding, taken together becomes a really juggling act. The unpredictability of dementia, the life-threatening crises it can throw up, can – does – take its toll on us physically, mentally, spiritually.
I know when this virus first began to creep across Europe, I started to lose sleep – worrying about how I was going to protect us, keep Mike safe and well – how on earth we would manage. And once it was in the UK I knew lock-down would have to come – although I expected it earlier than was the case, in the end. SO I had time to prepare us – and did. We went into self isolation on March 2nd – not quite full lock-down as we know it, but I significantly restricted our activities and access to normal life while I prepared Mike for the Full Monty.
Here we are – eight weeks in for most people, a little longer for me and Mike – and no end in sight – glorious prisoners on our own homes, with no prospect of parole. I can see the impact it is having on friends of all and no health issues. My friends with dementia are visibly less well. And the carers? Us? What do YOU say when someone asks how you are? Are you like me – “I’m fine, really OK…” And you might well be “fine”, “ really OK” at that moment, while someone is talking to you on the phone/Face Time/Zoom……but when its over….how are you then?
I’m going to hold my hands up, now. I AM fine, when someone phones and I have someone else to talk to for a few minutes. I am distracted for a while, this other person has something fresh and different to say, a perspective I may not have. A different voice – even listening to THEIR worries – they’re not mine…I m getting a bit of a break from my stuff. And then its over – they hang up. And I am back to my stuff again – and there is a little frisson of sadness, an acute spurt of loneliness, which I have to carefully push away before I let it take over. So I take a deep breath and go and find Mike.
But am I really OK? Why don’t I tell the truth? This social etiquette – that, British stiff upper lip – it is such a hurdle. Mostly I am OK. But I do have days when I really struggle – and those are the days when I don’t phone or face time or message anyone. I just withdraw and hope it will be better tomorrow. I certainly don’t let Mike know what I am experiencing, I protect him from that.
Who am I kidding – I am protecting me from it too. I will avoid facing my own emotions, my worries, thoughts and feelings – because …. I am scared too. The process is all too familiar. It is a long established habit, and I have done years of therapy to face and process those things, address the underlying causes, and build healthier coping strategies. My mental health is a daily work in progress, but some days I need to withdraw.
MOST of the time, I AM fine…MOST of the time I have my mental processes in hand, and can spot and address thoughts and feelings that are potentially unhealthy. I practice a form of mindfulness…I spend time each day in nature, I will try and share this with Mike – he is not always well enough to come with me – so I use my phone to record the dogs playing, or birdsong… take photos or special things I encounter.
I have to manage my sleep – I am not a good sleeper, and obviously a run of disturbed nights is not going to help my mental health – but like many carers, I have to cope with that as best I can. Disturbed nights with Mike happen. Anxious dreams/nightmares are more challenging, and I have had a few nights of very little sleep. Afternoon naps are a wonderful thing, and I am lucky that Mike likes to take a long rest most afternoons.
I DO have a great network of people – friends, neighbours….who regularly message me – or stop for a chat over the garden wall, who I socialise with on-line. I am so very glad for all this technology. But the fact remains I am on my own with someone who has a history of sudden acute illness that have taken him to the brink. And I am scared for him.
I am not religious, in the sense of conforming to a religious creed, I am not a believer in a higher power. That is not to say I have no spiritual life, I do. I suppose I represent my generations hippy pick’n’mix approach to spirituality…
I make the effort to be thankful for small things. I focus more on positives than anything. For each negative thought, I will try counteract it with some positive. Even if it is as simple as getting the laundry done (I hate housework). I stop to look at flowers, listen to birdsong….When I am out with our dogs, stopping to look at the world around us. Breathe in fresh air. Even at home – sitting in a sunny window, with a cup of tea and a book. Photo albums – a trip down memory lane with Mike, reviewing past travels allows us to escape the here and now. For a while. And I am Alright.
Written by Liz Brookes
Read part 2 here.