When M is home with me, especially on holiday, it’s more or less non stop.
By nature I’m a chatty person, and in many ways, so is M, but his speech and language difficulties make it so much more complicated. He was more or less an elective mute until he was 8, mainly using Makaton. However, he would whisper all sorts of things to me in my ear which I understood.
I’ve spent my entire life trying to get him to speak up more for himself.
Here’s a classic example.
New member of staff took him to Poole Quay this weekend, so they could see the Sunseeker boat factory (the ultra expensive boats that feature in James Bond films). He told me they also saw the boats going to Brownsea Island, a National Trust property. He has a NT membership card for him and any carer, but he didn’t tell staff, and staff didn’t, apparently, know either.
However, Social Services won’t see him when I’m present, contrary to proper procedure, something the solicitor is going to address. So they never see the good relationship between us, or how well we communicate. He is conscious of his speech problems, and moderates his language so that the other person will understand. He is also eager to please and will give what he thinks is the answer they want to hear.
So if they ask “Do you want staff at your flat until 9pm?” He would say “No”.
However, ask him if he wants to go bowling, to the cinema, or to see his friends in the evening, he would say “Yes!”
Social Services have said recently that M hasn’t contacted them to say he is unhappy about his care and support during covid.
Didn’t say that at that time he didn’t have a care manager and no one has a direct line to the local office.
Even for me, it’s difficult using the centralised system!
M loves to talk about the times when my husband was alive, and we went to a steam rally almost every weekend, I know it’s important to do this, but there are times when I’d like a bit of peace too. I spend most of my life alone, I’m just not used to having someone with me from the moment I get up until the moment I go to sleep, when he is home with me.
Because I sleep in what used to be the garage, and M’s bedroom is upstairs, sometimes I will say about 8pm that I’m very tired and need to go to bed early, just to get a bit of peace and quiet, but then I feel guilty about that too.
There are no easy answers to this one.