Getting to know more about Louis
Many will have heard or read about Louis Sainsbury from Comrie, his profound support needs, and the tireless and valiant efforts of his mum, Kate in striving to give him a better quality of life in the development of Appletree Community. Louie is looking forward to being able to live permanently at Appletree as soon as staff are recruited and sufficiently trained.
His mother, Kate, provides the following insights into Louis’ situation and the transition to Appletree:
Louis’ experience in hospital
What a terrible existence for Louis to have to live in a locked ward, where staff must work in pairs because of the danger from other patients; the sound pollution he endures in the tormented shouts of fellow patients, emergency alarms activated by staff out of fear, raised staff voices; living with adrenalin-filled fear and uncertainty of when he is going to leave hospital ‘bye bye hospital’; the lack of purpose in his hospital existence; the crushing contrast between relaxed time spent in his own house ‘Louis’ house’, with mum and trusted care team, the fear that overshadows these visits from the prospect of returning to hospital.
What a brave man to endure this. His resilience goes back to my mother’s lifelong example of loving constancy, laid down in Louis as habits of expression of love for family and friends, . the meaning and purpose, I have tried to give him, through holding out a future towards which he surely makes his way: ‘macaroni cheese and coleslaw; here,, ‘the beach’ there, a telephone call with Uncle Nick there. Focused in this way towards the future, with the addition of activities in his house in which he has agency, cooking, trampolining, stacking cushions off sofas, he makes sense one day at a time. Even if the horribleness overwhelms him and he falls back into OCD behaviours, seeking to destroy a specific item of equipment, trauma-response behaviour, shouting, even if there is an incident when staff pull an alarm on him and lead him with his arms behind his back and sedate him, he knows that he can ‘put it behind him’ and with the encouragement of his wonderful Key Worker, his staff team and myself, he can move on to a fresh day.
‘You are an amazing man, Louis!’ I say. ‘You are a star .. a hero … you’re like Nelson Mandela!’
Other times, we simply sit alongside him as he sobs. We put cream on the finger he digs his nail into, making a mark, expressing the pain of his incarceration. And then his natural optimism returns and he looks up with a grin. ‘No way, José’ he says. And we grab at that moment of wellbeing and build on it.
His care team note and speak about the terrible difference they see in Louis, not only between his being at home and being at hospital, but also the difference between being indoors in hospital, when he is most at his fearful, and outdoors, in the gardens. They too want Louis out as soon as can safely be achieved.
How heartbreaking it is as a mother to be helpless, to have to stand alongside, unable to solve the dilemma that there are not enough staff to let him leave hospital.
The house is ready, the small nucleus of a care team is in place, has been in place for months, is learning about Louis all the time, but still we need five or six more. I am powerless: this is the remit of the care agency, in a national post-Covid, post-Brexit context where there are too few candidates for jobs across all sectors. Meanwhile, he must go on living this agonising existence.
It is draining as well as heartbreaking. In the last three years I have driven 70,000 miles: in the first instance backwards and forwards to Hartlepool where he went for 8 months in 2018; since then, the 100 mile trip to Dundee, where he has been locked up since January 2019.
I have no days off, just a couple of hours here and there in a less-busy day: and the pleasure of time with Louis, with his care team, the support of a prayer group, seeing the project develop, extending our pray to care for others, noticing planets in the sky, being thankful for everything that is… even the hardship, for what it teaches, for the bedrock of trusting God, for the development of Louis as a person, and the love that is all around us.
Louis’ transition to Appletree
It’s currently a busy, turbulent, transition time. Louis is living in hospital still, with all its constraints and unhappiness for him, but regularly spending nights at Appletree and moving on to multiple nights, some with me, and some with staff. Simultaneously we are recruiting new staff, some are going through training, we are laying down systems in the house – for example, cooking, shopping, planning activities, cleaning, mutual support for each other: staff, myself, Louis.
I think of the disciples in the boat in the storm-tossed sea, fearing they were drowning – and Jesus calming the seas, rebuking them for their lack of faith!! Yet even in this time of uncertainty, I completely trust that this is God’s call and vision and that as we live each day at a time, we are supported. We are surrounded by wonderful people sent to support us and we are making progress!
~ Kate Sainsbury