Does He Take Sugar?

Yesterday was quite a day. This is what it looked like. I don't expect anyone else to read this litany of worry and concern, I just need to record it. 

1pm Arrive at Nick’s straight from work to find him only half dressed. He had somehow pulled all the middle buttons off his shirt during the course of the morning and it’s lying on the floor.  He hasn’t had his breakfast yet, though the morning carers have been in - their last call as their service is now handing over to the new one, Acme. I make coffee and give him a banana to keep him going as we have two meetings arranged back-to-back this afternoon.

1.15 The Acme manager comes to do his assessment. He seems professional enough but I am increasingly angered by his lack of sensitivity towards  Nick, his client. I’ve explained that Nick is hard of hearing so there are times when it will be useful for me to speak on his behalf but that he is quite compos mentis enough to discuss his own care requirements.

But time and time again the manager asks me things like “Does he use any walking aids?” “Can he go to the toilet on his own?” or “Can he feed himself?” without even looking at Nick, as if he is not even in the room. I make a bit of a joke of it at first, referring back to Nick, but start to lose my cool after a while.

“He’s right here” I say between slightly gritted teeth, “Why don’t you ask him?”
It's a classic case of "Does he take sugar?"

Acme do not want to feed the cats (“our girls will be scared”) will not have time to do more than give Nick his tablet at midday so he will have to get his own lunch – more preparation work for me, I think grimly – and although they have an hour allocated for domestic help, their care plan does not mention laundry so my request for them to set the washing machine going, let alone hang out the wet clothes, is met with a flat refusal. I will have to go back to the social worker about that, he says, only of course she’s away. 

When he sees Nick’s bathroom and the state of the loo (let’s just say his aim is not always on target) he visibly recoils so I wonder if much proper cleaning will get done either. However – we don’t seem to have much choice right now. I need to find another care provider as soon as possible but in the meantime we had better all do our best to get on together.

2.30 Two lovely girls from Shelter come to see us to talk about help with re-housing. The landlord has been brilliant – much more tolerant than we could have expected given that Nick has wrecked the bathroom, caused two floods to the property below, nearly blown the whole street up several times before the gas was capped off, and generally been a liability. However the initial six month lease is now coming to an end and he has to think about the rest of his tenants, his insurance and – he’s very clear about this – Nick’s ongoing comfort and safety. It's really not an appropriate place for him to be living in. So he has asked Nick to leave.

I had filled in the forms for social and sheltered housing about a year ago, when Nick was still living in the north east. He is also on the “medical priority” list for properties with the kind of adaptations he needs, so in a way it helps that the landlord has issued an ultimatum. We were advised to talk to Shelter about getting help to speed things up. I thought that was for homeless people, says Nick. Well, yes – or those about to become homeless!

Anyway, the girls are kind and informative. They both bring Nick into the conversation and talk directly to him. One of them raises her eyebrows just a touch when Nick suddenly lurches out of his seat to pour himself another half pint glass of wine from his box, but she’s seen his case notes and evidently knows the score.

They’re going to see where we’re at with his registration and get back to us next week.

3.30 Nick starts to eat his lunch. I have made him one of his favourite things, a

cheese ploughman’s on some nice crusty bread, with salad. After a few bites and a lot of coughing he stands up and says he can’t eat it because he has a wobbly tooth and it’s too uncomfortable to bite anything. Since when? Just today. What about the banana? I ask, but he says that was quite soft. Of course, being Nick, he hadn’t thought to mention it until now. I have a look and it really is wobbly. I microwave some soup but he says he can’t eat at all, which is a disaster as he needs to eat. Damn! It’s been on my to-do list for weeks to get him to a dentist. Start phoning around and manage to get him an appointment for the end of the afternoon – in the meantime hang out his washing and try to get on with all the admin I was going to do today, including work out why one of his standing orders hasn’t been paid. Meanwhile Nick has an hour’s siesta.

4.45 Call on my mobile from the Acme manager. He doesn't feel he can take this case on as they can't do what is on the care plan, i.e give Nick a shower, without either the appropriate bath fixtures or specific guidance from the OT who assessed him. (As I had worried, there has been no proper handover) Therefore he is taking steps to hand the case back to the short term intervention team. 

What does this mean? I quaver. Will anyone be coming to see him at all or what? 

He thinks that I should talk to social services (I can't as it is almost 5pm and I'm about to get Nick up to take him to the dentist) because at the moment he doesn't think it will be his team who comes back this for the evening call. Then again it might be, it just depends on how soon the council pick up the request to take back the service. We'll just have to wait and see.

5.00 Off to the dentist. It turns out that Nick has not one but two wobbly teeth, his bottom front ones. His teeth are not in a great state at all and the dentist, who is extremely sympathetic and thorough in his explanations, says that it's often a problem with HD patients as it's so hard to brush their teeth properly. Sometimes they come loose through all the accidents and spasms too. But in the meantime two teeth need to come out - Nick has a local anaesthetic and bingo! they've gone before you can say, "Tom Sawyer". There's a lot of blood. The gums can't be stitched as they normally would because of the movements, but it's all packed with antiseptic gauze and luckily Nick seems to heal very quickly. His mouth is going to be sore though and he needs to stick to soft foods tonight. I buy ice cream on the way home and take him back to the flat for a rest. 

Is anyone going to come tonight and if so, who? Later on I go back and meet the Acme manager again who has returned with a female carer. He's still not sure what's happening but his colleague will see us in the morning with more information. I feed the cats and make some dinner for Nick and hang out with him for a while, checking that he feels ok, that the bleeding has stopped and that he's not drinking much. "I'm just having two glasses, with water" he says, and once again I trust him. And once again I turn out to have been an idiot to believe him.