I suppose none of us ever expected to be living through a pandemic, surely with today's science and medicine that's a thing of the past? Hmm no there will always be new illness, illnesses for which there are no treatment and diseases that spread so quickly it's difficult to stop them. No matter what medical and science advances are made history shows us that there will always be a modern for the times illness that can cause an epidemic or pandemic. What matters is whether or not we all pull together and do the right thing to keep ourselves, our loved ones and show kindness, consideration and support to strangers in order to keep them safe too.
We are currently seven months into the Covid-19 pandemic and it's not really been any of the things above, there's a lot of selfish "I can do what I want, nobody has the right to tell me what to do and as long as I'm okay everyone else can die" attitude. If I'm honest it's that attitude that has horrified me the most. I just don't understand how the world came to be so egocentric and quite honestly I don't think I will ever know let alone understand.
It's partly the egocentrism of others that makes being a deaf carer during a pandemic that much harder. First of all there's the fact that none of the briefings had accurate captions*. There weren't interpreters either and I was and am dependent on friends telling me what was going on or written summaries that don't cover all the rules. If those friends are busy or not willing I have no idea what's really going on.
At the start of Lockdown in March 2020 the government encouraged the withdrawal of respite care instead they gave priority food deliveries to those who are vulnerable. The problem with this is, it's not just about getting food, toiletries etc. it's about leaving the house, seeing someone who isn't your caree, remember how to speak to another human being, seeing the outside world. A shopping trip holds far more than the essentials to someone who spends over 12 hours of their day caring for another individual. It's okay though along with lockdown rules came the rule, you can leave the house for one hour of exercise a day....erm how you just removed my ability to leave the house in order to minimise the spread of the pandemic? Unlike with little children many carer's cannot just wrap up their caree and head out like you can a child. Leaving home with a baby/toddler can be a military operation leaving with a caree is even harder...in my case leaving home requires all the following:
- Access to a specifically designed toilet {yes even for an hour}
- Wheel chair
- Walking frame for transferring to wheel chair
- Blankets {even in summer}
- Drinking water
- Medication
- Phone
- A spare person to aid getting my caree out the wheel chair to transfer to something else
- Specially designed stepping stools to aid with getting in and out of the car or certain buildings etc.
That's a fairly minimal requirement but the biggest one of those is the extra pair of hands...the lockdown rules state you must not meet or be with a person outside your household...I don't have anyone else within my household. So this means even if I took my caree with me I couldn't transfer her to a wheel chair for exercise anyway. There is a hoist but because my caree had Pelvic TB one hip joint is fused with TB lesions and won't bend, there's also stunted bone growth meaning one leg is shorter than the other all meaning the hoist would force her into a position that could break her hip to a degree that wouldn't be repairable due to the lesions, she's unable to wear shoes too so transferring is very difficult. All in all it meant I was going NOWHERE.
Unfortunately most likely due to my tiredness and not really paying attention my caree suffered an injury, I emailed and begged, I tried to use relay but calls were disconnected. I tried phoning but couldn't really hear what was going on and that left me even more tired than before. My hyperacusis is worse when I'm tired and that really didn't help matters. I was caring 22hours a day and doing the one thing that's a big no in heath and safety, single handedly lifting another person. I already have long term damage from a previous back injury but this just made it worse and I was in constant pain, I'm usually okay with pain and will stick it out without painkillers but I couldn't actually move at one point without screaming in pain. My GP refused pain medication simply telling me not to lift and to rest with moderate exercise. Great if your able to do that but I couldn't. Occupational Therapy was closed and I wasn't able to access an assessment let alone equipment.
It took weeks and a little bending of the rules after my carees bed broke where I had no choice but to ask someone who knows a lot more about reinforcing wood than I do to come and fix it. Obviously strict infection control was adhered too. Aprons, masks, gloves, hand washing and disinfecting of everything followed by remaining in isolation but I still felt very guilty, it had a huge negative impact on my mental health to have been pushed into a position where I had to put my caree and someone else at risk, break the rules just so my caree could get into bed. The other thing that made me feel guilty was that I couldn't reach the right departments because I couldn't hear properly on the phone and the services I needed to contact ironically seeing as they deal with disabilities on a daily basis refused the relay calls.
I was still caring 22 hours a day at this point. I depend on flashing lights to wake me not sounds and as I was lifting my caree out of bed and into bed I had no choice but to be awake to help her to the bathroom through the night. I'm VERY lucky to have friends in other countries who are awake for their day time who I could text overnight and I'm not sure I could have got through it without them. Whether or not they were aware just how much I was sobbing as I spoke to them I don't know but I do know they helped me to feel better. Gradually I managed to get some pain relief for my caree by calling the out of hours GP and magically the pain was manageable and slowly she could with a large struggle get herself in and out. I'm so grateful to that GP because it means I can sleep at night again. I have difficulty persuading my own GP to write a script for my Carees pain relief meds {the gp is the same for us both} but I'm working on it.
That's another problem, medical appointments are now by phone only...guess who struggles and whose surgery is NOT au fait with the relay system? I've made no end of complaints about this and got absolutely nowhere with it. I try to use out of hours as much as possible because they DO use relay.
As restrictions were lifted I rather naively expected to go back to how things were but the care agency refused to keep us on the books because we are 4.3 miles outside of a town and no other agency will take us on. I went down the PA route but that proved to be another disaster as she was unreliable in charging and I couldn't risk a huge bill at the end. I'm not sure it matters, I'm just not sure the stress of adding another person into this equation when masks would have to be worn is going to work when communication is paramount.
I am writing this reflectively so in my usual way I am dumbing down how bad some things were but at the same time nothing much has changed for us. I kept and will be keeping the fortnightly food shop delivery and the lady who runs the veg market stall is a true Angel and is also delivering and that's another deliver that as long as she provides the service I will be using it.
I always struggled with shopping and found the checkout too difficult for a "big" shop. I couldn't hear and was always being rushed and things ALWAYS went wrong. The one store I found helpful was Sainsbury the really kind lady closed the till behind me and refused to rush when she realised I was dead. I have shopped there almost exclusively ever since with the exception of Waitrose who also have some really nice dairy free products that I can eat. The deliveries when they came with lockdown were a revelation, I never felt entitled to them before but suddenly I had no choice yet now I wouldn't ever look back. It's a godsend because with the added complications of masks I really don't think I could get through a store and checkout now.
As I write this we enter a new lockdown in five days time. I have no idea why in five days, I honestly think that just gives it longer for the pandemic to get worse. Yet that's not really the point, the point is Lockdown was lifted months ago for many people but I still have no respite so cannot go out, dependent on deliveries and as far as I can tell nothing whatsoever has changed it appears to me that I am still in lockdown that I've been in lockdown since I became a full time carer over five years ago.
I've seen lots on social media at times where by people complain that lockdown is isolating. Caring is isolating but unlike a lockdown there is no end date. Lockdown encouraged the use of zoom calls, face time and other video chatting, none of them have captions so again it's not an option for me. Not that it matters most people who used to speak to me no longer do...caring takes all your time and energy. A phrase I hear often is "if you care you'll make time" at what point in my 22 hour day would you like me to make time? I wouldn't be doing 22hours if there was a way to make them shorter because believe me sleep is even more important to a deaf person. The problem is everything is so much more exhausting when you can't hear. Your more visually aware for a start but there are other things too like your brain working twice as hard to decipher what is going on. The other thing is if I'm that busy that I'm doing 22hour days, should I really just not sleep at all to make sure I have time to send a few texts to someone? If someone expects that from me are they really a friend?
It's taken me a long time a very long time to realise that I don't need friends who put the onus on me to make all the contact, who cannot understand the level of selflessness needed to be a carer. The ones who stick around and who make the effort are the ones who will always be there who always supports rather than uses emotional blackmail and increases the guilt and negatively impacts already fragile mental health.
Does this mean I'm worried about another lockdown...not really, it's never actually ended for me so it appears to be nothing different. What does irritate me a lot is the way people complain about it. They are enduring this for a short time and it's a minor inconvenience in order to stop millions of people dying. Many Carer's experience this for decades without respite, without an end date without the knowledge they are saving lives. It just goes to show the flip of the coin can always lead to something far worse, to someone whose struggling far more than you are in the current time.
Does this mean lockdown is easier for a deaf carer, no it's not it just means I've found some considerable positives and that the isolation is something that can be adjusted too. Perhaps though it's easier for someone whose been deaf from birth and who has never really had many in person social situations because they are difficult and exhausting and as the saying goes "you cannot miss what you never had".
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