The theme for Learning Disability Week 2021 is relationships so we asked Jenna Graham, daughter of PAMIS Governor Pat Graham, to share a blog about her relationship with her sister Lauren and the effect that Covid 19 has had on that relationship over the last year.
Communication with Lauren has always had its challenges. As she can’t explain how she is feeling or what she is thinking, we use our experience to try to support and reassure her using a range of techniques and strategies. That works reasonably well for the day to day. What is much harder is the big things; when our Gran died, when Lauren moved from my Mum’s house into supported accommodation and when the world stopped because of COVID. These things have had a monumental impact on Lauren’s world, and she feels them in ways we can never fully understand. For me, this has been the most painful bit of the past year; that I can’t explain to Lauren why I have abandoned her and why I will never, ever let that happen again.
My mum asked me to write about the impact COVID has had on my relationship with Lauren and I have to be honest that the prospect filled me with dread. I have spent the last year trying very hard NOT to think about this because it makes me feel unbearably sad and guilty. I know on a rational level that it is not my fault that I have barely been allowed to see Lauren in the last year, but that doesn’t make me feel any better. Lauren was allowed by her care provider to see my Mum and her partner, Alan, much quick more quickly than many other adults living in supported accommodation, because of the impact of lockdown on Lauren’s mental health. All the things Lauren enjoyed were removed in one fell swoop and that, like for so many others, had a huge impact on her wellbeing. This would have been the longest Lauren had not seen her family and that must have been scary, confusing, and lonely for her. I am so grateful that she was able see our parents again, and that she was allowed some small semblance of normality relatively quickly. That alleviated, to some degree, my worry that Lauren would think we had all disappeared indefinitely.
I am a teacher and since August I have been back in close proximity to a huge number of people from different households. As a result, I am much more of a danger to Lauren and the other members of her household. Even when we had more freedom to see other people, I have had to be very careful and keep a distance from Lauren which is very strange for both of us. As Lauren can’t speak, much of our communication is done through touch. I also live in a different region to my family which has meant that even outside visits have been curtailed since October. I saw my family on Christmas Day, but that was the last time until a couple of weeks ago as was the case for many people. While other families can text, or call or zoom to connect with each other, Lauren and I can’t do these things and she doesn’t know where I’ve gone, or why she has only seen me a handful of times in the last year. I have no way of explaining this or reassuring her that this is only temporary. I can’t think of another time in our lives when it would have been more beneficial if she could speak.
Lauren has been much happier talking to me on Facetime since she has been allowed to see my Mum and Alan again. In normal times, I would have Facetimed her, so this maybe feels slightly more comfortable for her. For me, it’s a lovely way of getting to see her, and while she is often pleased to see me and hear my voice, she often looked sad and confused. I was finally allowed to travel to Fife a couple of weeks ago to see her. While this was a momentous occasion, Lauren wasn’t particularly delighted to see me. In the past, if she hadn’t seen me for slightly longer than usual, she would often be in a ‘huff’ and avoid looking at me, as if to say ‘you left me! I’m not talking to you!’ She has been gradually more relaxed since then, and I hope as time goes on and I can see her more regularly she will feel more reassured that I’m back for good.
As summer approaches, more people have had their second vaccine and the restrictions are lifting, everything feels a bit more hopeful. If Lauren’s day service could re-open and she could start getting to do some of the things she really loves again, it would make such a difference to her life and I hope would make the last year fade a bit in her memory. I am so lucky compared to so many people; I still have my job, none of my family have had COVID, we are moving into a new house and are getting married next year. However, none of that will compare to the day I am allowed to hug my sister again. That will be a very good day indeed.