I want to talk about carer’s anxiety and stress specifically my recent personal experience. It’s been almost two weeks since I had what I now believe was an anxiety attack.
I thought I was doing ok. I had a few blips but I felt I was dealing with my anxiety and stress from being in isolation for over 3 months.
It seemed like a good idea at the time to stop the support we had of 4 daily calls for mum’s personal care and take over the role myself. Anything to reduce the exposure risks for mum.
But it meant that my world became just mum & me.
I did feel overwhelmed at times but I reached out to an organisation called Dementia Carers Count and also through a twitter contact received valuable advice from an Admiral Nurse (but more on that in another post) to try and combat it.
So what happened, I honestly felt ok, I thought I was managing. How did I go from that to a full blown anxiety attack?
Frustration
Late one night, the stress and anxiety I’d been feeling bubbled up. At the time, I didn’t recognise it as an anxiety & stress attack. I just needed to vent, so that’s what I did. I tweeted a small rant on twitter.
One of those nights where i just need to yell on twitter how hard this is. Am I'm selfish for thinking of myself -almost 4mths with no support at home, no 4x daily carers calls, no respite care, no help, isolated. I'm tired, lost a day this week, thought it was Wed not Thurs 1/2
— Dementia Who! (@Dementiawho) July 19, 2020
The responses I received that night and the following days were full of kind wishes and support.
Looking back, things started to deteriorate a while back. I’d been having a pretty hard time with mum but I still thought I had it handled.
I still believed that I was doing ok, that I was dealing with isolation. But then that night my anxiety started to spiral out of control.
Anxiety & Stress
I started to worry incessantly about a fire breaking out and how I would get mum downstairs and out safely.
Previously, mum had limited mobility but had been able to stand/ transfer using a stand aid. Since then, mum’s health deteriorated further with spinal cord compression and she is no longer able to stand.
So that night all I could think about was fire and how to get mum out? In time? How scared she would be, and how her Alzheimer’s could affect her response?
Her bedroom is above the kitchen, what if a fire broke out in the kitchen? Smoke inhalation could kill her before the fire even reached upstairs!
I have too many things in the kitchen. Appliances were being recalled for fire safety like washing machines, freezers – what if one of ours sparked?
It’s crazy, but once it gets into your head it’s so hard to get out. Was everything downstairs unplugged? I must’ve gone down about 20+ times, checking and rechecking. Asking myself whether there were any potential risks for fire? My mind was going in circles.
I tried to calm myself but then my anxiety sparked again. What about the fire alarms, were they working? I wasn’t sure as I hadn’t checked them recently, and I couldn’t check that night and on it went.
What about the living room, the living room hoist has a battery, and it has to stay in the charger. Batteries can explode, shit what should I do, my mind just kept going round in circles at the possible dangers.
I lost count of the number times that I got out of bed to check, my chest felt heavy and my mind whirred with the potential fire risks.
Lying in bed, anxiety and stress increasing I tweeted my frustrations. I wasn’t expecting any response at 1 am. It’s was lovely to receive such a positive response, kind words, not only that night but for many days after.
Every night, I sleep with a baby monitor listening to mum breathe. I sleep when I can but wake every time she makes any noise, especially if she coughs repeatedly then I start to worry that it’s something worse.
I’m always tired, physically it’s challenging to do mum’s personal care. Her personal care normally takes 2 people. I move her by pushing and pulling slide sheets, moving from one side of the bed to the other. A job that took 15-20mins for professional carers, can take over an hour for me alone.
I know every carer has their own stories on dealing with anxiety and stress. I find that it’s comforting reading stories shared by others in their blogs, knowing that people have a similar experience means that you’re not alone.
Just alone in the moment.
I had no one to talk to that night except on twitter. One user asked if a 24hr helpline would’ve helped and I honestly think it would have. The ability to talk to a professional who understands and can support you “in the moment” would’ve been brilliant. Wishful thinking for the time being.
I had to work through it myself, it was my first experience of OCD behaviours with anxiety, not something I want to experience again.
It’s similar to having extremely bad eczema. I would scratch, and keep scratching the same spot, even when it started to bleed. I can’t explain it fully but there is such a relief from the itching, that you just keep scratching even if it seems crazy to scratch until it draws blood. That night, it seemed crazy to keep checking the same spots, but every time I thought about it, doubt would arise in my mind and I couldn’t find relief until I checked it again, and again.
My anxiety kept increasing, I wasn’t going to sleep tonight.
So I sent out my tweet, and just that action alone, writing it down, saying it out loud just took the edge off my anxiety. I saw how I was acting and needed to do something to really calm myself.
Once that happened, I thought about mindfulness to try to shift my focus from the anxiety I was feeling.
Mindfulness
Mindfulness for me is bringing my focus back to the present moment, for me focusing on breathing. I had to bring my mind back to my breathing, to my body everytime it wandered.
Breathe
Just breathe.
It feels like meditation to me, just breathing and focusing on the feelings of my body. I went through what they call a body scan, it helped me relax, and stop worrying which eventually allowed me to sleep.
I’m not going to lecture you on mindfulness, I find it difficult to do and there are a wide variety of resources out there from mindfulness and meditation apps like Headspace or The Mindfulness App, to numerous courses that you can try. I started with a free online course from FutureLearn. Julia Powell has started to launch Mindfulness courses for both those with dementia and those who want to learn how “to manage your stress levels and deal more skilfully with the ups and downs of life?”
Help & Support
The messages of support and advice I received made me realise that I wasn’t being selfish. I just needed help.
One suggestion is to let personal carers come back to help support me and my mum. But, I get more anxiety at the thought of letting anyone into the home, than anything else at the moment. The fear of spreading coronavirus to mum is too real for me still.
So I’m not there yet – in time hopefully. I hope I can learn to relax enough to allow the carers back to help with mum’s personal care.
So instead, every day, I’m actively working on managing my anxiety.
Mind, the mental health charity have a good guide on how to manage stress and anxiety. Mind also has a lot of information about how to manage stress including a video called 8 relaxation tips for your mental health.
I’m practicing mindfulness in the morning, gardening outside, exercising, writing, cooking, knitting etc
Whatever it takes to reduce my stress and anxiety.
I’ve added a weekly wellbeing check to reflect and see where I’m at. Sounds mad, but it is important. It’s part of my to-do list to check in on myself, to try to head off another attack before it develops.
I know that I can’t eliminate stress or anxiety at the moment with the pandemic, my caring role and concern for my mother’s well being. I just have to learn how to manage it so it doesn’t overwhelm me again.
