Except Toby will never be independent, nor will he be capable of exercising choices about his living arrangements. He is profoundly disabled, with complex medical needs and a cognitive equivalence to a neuro-typical two year old.
I had to make that choice for him, knowing full-well that if he could understand and fluently communicate, leaving home would be his worst-favourite choice in the world. The word “guilt” simply doesn’t convey the depth of sadness, betrayal, desolation and self-loathing I’ve experienced in the months leading up to his move and its aftermath. I think it is probably the very hardest thing I’ve ever done, and even though he’s mostly happy and settled now, those awful feelings will never completely go away.
My head tells me it’s the right thing to do but my heart keeps screaming in protest. Last year I learnt that despite the intensive and radical treatment I’d been having for several months, my breast cancer had spread to my spine, meaning that I now have the Stage 4 incurable version. I may be one of the lucky ones and live for years yet, or there may be a very different outcome; but either way, I don’t have the strength or stamina I used to have. I know the sensible thing is to settle him somewhere while I’m still well enough to advocate strongly for him and make absolutely sure his new carers understand every nuance of his very complex condition.
Toby and I have always been closer than close. He spent most of his first 6 years in hospital, hovering on the brink of life and death; on 38 separate occasions I was told he wouldn’t make the next few hours. I always stayed in hospital with him, sleeping every night by his bedside on a pull-out camp bed, sometimes for months on end. We faced his horrors together – the crash teams, the police-escorted ambulance races to specialist hospitals, the torturous invasive procedures to save his life – it felt like we were a team, Toby and I battling together. When two people have clung onto each other during such terrible times again and again, the bond is unbreakable. It’s as if we are part of one another. It would have been easier to cut off my leg than to move Toby out.
Once I had decided that he had to move, I knew that he had be safe, happy and well-cared for, and that I wasn’t going to settle for anything less that excellent. After a lot of soul-searching, I managed to bring all my free-flowing anxieties under control, and name them in three “essentials” sections, which were as follows:-
1. Kindness. I wanted his carers to fall in love with him, to want the best for him, to work hard to decipher his very limited communication, to be gentle, caring, lovely people. I wanted them to come to recognise and adore his mischievousness, that sense of fun and hilarity that is the essence of Toby, and to respond to his warmly enormous sense of humour.
2. Location. He had to be local, a couple of miles away at most. Not only because it would be easier to see him regularly, but because I just had a gut feeling that he was less likely to be ill-treated or abused if his carers knew mum lived close by.
3. Number three was the most controversial. I knew it wasn’t going to win me any friends in our Local Authority, and I knew it flies in the face of modern-day policy and politically correct thinking, but this was non-negotiable. Toby was going to live in a residential care home.
There were 101 reasons why a residential care home was the only viable option for Toby. When Toby’s world wobbles a little bit, he gets very frightened, very anxious and very challenging, and the resulting meltdown can become aggressively unmanageable very quickly as he lashes out and loses control. Things get thrown, rooms get destroyed, people get hurt and it can go on for hours. I can’t manage Toby’s meltdowns single-handedly. I used to blame having cancer, but I can now see that no one person can do it alone. I knew he would need a team of people supporting him; something that is very unlikely to be funded in a supported-living situation. It takes two people to be able to safely distract him and help him refocus, and at least one other person to clear up the trail of chaos he’s left in his wake. Most of the time Toby is lovely, delightful, charming and affectionate, but you never know when the next meltdown is coming or exactly what form it will take.
I also know that Toby enjoys being part of a community, a small group of people he can happily co-exist alongside. He loves being part of a class-group at college, he loves being part of our family, he’s never happier than when our house is full or we’re having a party at home. I knew that a residential care setting was his best possible chance of becoming part of another new close-knit community.
Toby is exhausting to care for. He needs round the clock medical care, he has reduced mobility, and he is a whirlwind of activity and energy. He needs constant entertainment and stimulation. He’s a very “in-your-face” young person, and if he gets bored he starts creating cheerful havoc. Cupboards will be emptied, table-tops cleared, bookcases unpacked, important documents torn – Toby isn’t the sort of chap you can take you eye off for a moment. In a supported-living environment, an unsupported one-to-one carer would burn out halfway through their first morning. In a residential setting, there are lots of staff, they can share the load, they can support each other, and they can safely take time out for a few minutes if it all becomes too much. Toby loves people, just watching the other residents coming and going can keep him occupied for ages. A peer-group was essential.
Then there is the issue of care itself. In a care home with proper management and supervision of staff, it’s far less likely that important things are left to chance or fall through gaping holes in provision. Someone notices when his nails need cutting or he’s due a haircut. Someone will remember to re-order his medications. There are systems and checks and balances.
Who oversees the management of care in most supported-living arrangements? Hilariously, Toby would more than likely be in charge, he would be the legal employer of his one-to-one workers. Without proper management, care-workers wouldn’t feel personally responsible for doing more than getting through their own shift. Who would notice and act on any worsening health issue, or if he hadn’t pooed for week? What would happen if one of the shift-workers couldn’t was off sick? Would Toby be left on his own with access to cooker knobs, and capable of opening the front door and wandering off into the traffic?
I also had fears that, because supported-living schemes are funding by welfare benefits, his security would be at the vagaries of any future benefit cuts, and with the current climate that seems to be targeting the most vulnerable this is a risk not worth taking.
Persuading our local authority to fund residential care was not easy, but I persevered and if there is a perfect solution, we found it.
Directly across the road from our house is a care home for learning disabled adults. We’ve been neighbours for 12 years and I’ve always been impressed at how happy and engaged the residents are, and what great relationships they seem to have with their care-workers. It was a fight and a half, but that’s where Toby lives now.
I see Toby most days, sometimes two or three times in the same day. Sometimes we wave to each other from our front windows. Because he’s so close I worry far less, and I’ve also been able to build very good and trusting relationships with the staff.
There has been one unexpected bonus. For the first time in his life, I am his mum, not his carer. We can focus on fun without the relentlessness of his care getting in the way.
Most of all, I am so relieved that Toby has been settled in a planned and managed way, so that when my time comes, my death will be a sadness to Toby rather than a tragedy. Too many learning disabled adults lose their parents and their home at the same time, and are placed as an emergency in wherever can take them quickly, regardless of suitability, with no understanding of why.
Things I’ve learnt
1. Work out what you want, and don’t compromise on the absolute musts.
2. Stay in the driving seat. Find out about possible places and options yourself, you don’t need local authority permission to go off and look at places, nor do you need to be confined to the places they suggest.
3. If a care home is right for your young person too, stick to your guns. They will tell you it’s against council policy, or that they can’t fund them. They can.
4. Write a list of reasons why. I had 18 solid good reasons why across the road was the only viable option, and the list made it much easier for the social worker, who was excellent throughout, to fight our corner.
5. Even if you think you’ve found the right place, go and see several more. The contrasts between different options can be used to strengthen your case, and it also gives the local authority the impression that you are being open, flexible and reasonable.
6. Go and visit the place several times at different times of the day to get a real feel for the atmosphere. Listen to your gut feelings.
7. When they move, let go and don’t micro-manage. Of course the staff won’t do it as well as you can at first, but let them make their own mistakes and find their own feet. Don’t be critical; be accepting, supportive and helpful instead.
8. Acknowledge and express your own emotions. It’s not going to be easy, there were several times in those first few weeks when I wanted to go over and bring Toby back home. He was clingy and sad, and I was in bits. It will get easier; it took about 6 – 8 weeks for Toby to accept the change, and suddenly there was a real contentedness about him that I hadn’t seen before and I knew then that we were nearly there.
9. Don’t beat yourself up when you suddenly find you have time on your hands and it’s actually a rather nice feeling. I struggled with that one and felt guilty for weeks at doing anything enjoyable, because Toby’s care was all-encompassing for 20 years and now suddenly I was able to watch a TV programme I wanted to see, or pop out to see friends, or go out for a meal at a moment’s notice. I realised eventually that all those negative emotions have absolutely no bearing on whether Toby is happy or not; his emotional well-being is completely independent of whatever I get up to.
10. Toby is still, and always will be, an enormous and integral part of our family. His moving out has shifted our relationship a little bit, but we are as close as we ever were. However, now that I don’t have to enforce the care regime, a whole layer of low-level conflict has been removed, and we are building the beginnings of a new sort of closeness and mutual appreciation.
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May 17, 2014 in Advocacy, Autism, Care workers, Carers, Disability, Domicilliary, Issue 6, Learning disabilities, residential. Tags:advocacy, autism, care, children, disability, learning disability, residential