For the last twelve months I have been living with a friend who has a severe brain injury. My friend Bill* was involved in a car accident many years ago. Since that time, he has managed to live independently in his own home with some support. Over the years he has participated in a range of social programs while his mother was on hand to keep homelife on an even keel. This arrangement is changing with the arrival of the NDIS and as his mum gets older.
COVID-19 has impacted Bill’s life. Support Workers who were with Bill twice a week eight hours before COVID-19 have become inconsistent with these hours. One week a worker may be with Bill two hours on one day, while another worker may be with him for three hours on a different day. This has made it a challenge for Bill to organise appointments, social life, and such things as grocery shopping. As well as this, who arrives to support him can change. Routine is important for Bill; in many ways it has taken the place of his short-term memory. When a new face comes to his door, this can effect Bill’s mood; he now has to spend time with someone he does not yet know. Will he like them, will they get on? A new worker has to get to know Bill, his personality, and habits, and this impacts the way he lives day to day.
At the beginning of this COVID time, a worker Bill liked very much simply stopped coming. When we asked why we were told that this worker was casually employed, and his hours were now going to permanent staff. This casual worker knew how to be with Bill, he was able to look past certain behaviours, challenge others, and roll with Bill’s repetitive conversations in a way that was more like ‘friend’ than purely ‘professional’. The best support workers walk a line between friend and professional, becoming in a sense a ‘professional friend’. To be this way requires intuition and attention; it is a way of the heart, not just the way of a job description.
As well as this, Bill’s cleaner stopped coming for a couple of weeks while he and his family were tested for COVID-19. Thankfully, all was clear. Bill and I missed the cleaner while he was away; Bill because he can laugh and joke with him, me because I was reminded just how important it was to have someone around to help keep the house clean.
During this time, it seems that families who can are choosing to support their loved ones themselves rather than relying on outside agencies and risking infection. Because of this, the hours available for agency workers has decreased. As a result, casual hours have dried up as work goes to permanent staff. For Bill, an experienced casual worker was replaced with other staff. And like many in Bill’s position, at this time, he does not have an extended family structure to rely on outside of support agencies.
Also, the friendship I share with Bill has become stressed. Bill and I go way back; we have come to know, from experience, our limits of sharing time and space together. Before COVID-19, every four weeks or so, I would spend a couple of days away with friends in Sydney; this would enable both of us to rest and recharge. As well as this, locally, I could get away to café’s and the library if I needed some space. However, with support worker hours varying, with retail restrictions still in place, and authorities in Sydney doing their best to keep outbreaks contained, arrangements for rest and space have become a challenge to maintain. Going to Sydney especially feels like a risk, not just for me, but also for Bill, his mum, and my family.
As each day goes by, I am not sure how long Bill and I can remain in each other’s pockets. When it becomes a challenge to live compassionately with another, then space is needed. Arrangements before COVID allowed us this space. A meditation practice has become even more important.
*Not his real name.
Hi Andrew, I thought for a while about this because I am currently living with and supporting my mother, so in a slightly similar situation where I am spending a lot more time with someone with no breaks. I think what has helped me strangely is being quite ill for a long time, where I haven’t had the energy or resources to support her as much as I’d like. Whereas before, I was treating it like my main occupation to help her, suddenly I had to only do what was necessary. This meant that she naturally found things to do on her own and began to spend a lot of time reading things on her computer. Whenever I start getting annoyed, usually through tiredness, I remove myself (but always available to helpif needed). As it’s me who was causing the friction, and my mum can cope quite well inbetween, this has been a great strategy for quite some time now… 5 months? I’m sure your situation is different but I’m thinking of the principle here of whenever anyone spends too much time together friction will arise. Are you able to hold back at all and disappear, with one ear open, during the day? I find this is what enables me to keep going. Best wishes to you and Bill xxx
On Tuesday, 1 September 2020, Lines From Inbetween wrote:
> Andrew posted: ” For the last twelve months I have been living with a > friend who has a severe brain injury. My friend Bill* was involved in a car > accident many years ago. Since that time, he has managed to live > independently in his own home with some support. Over the ye” >
Thank you for sharing this. Yes, there are times in the day when we are doing our own stuff and there is space. The nature of Bill’s injury can make these times inconsistent and they can end suddenly. It’s all an exercise in staying present without attachment or expectation….can be tricky
Keeping you both in my prayers. Not an easy time. Thanks for sharing, a real human crucible. Shame Cafes are shut – the news here is that Australian rules are rather strict but then, like in Rugby, they have their ways of doing things. Glad you hav the meditation, it is a treasure for tough times.
The cafés are now open, though with limited trading and numbers..though this is in my neck of the woods of course. The State of Victoria now has the worst outbreak of COVID and is basically shut down with its border closed. It’s like if the UK was a federation and Scotland had its border shut to England…yes we play Rugby differently here..
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