I wanted to write this post last night, but I was too upset and emotionally exhausted after a day of flitting between anger and crying.
I had a visit from Social Worker yesterday. A professional I placed my trust in to help me. This was a new person as I was taken off the allocation of my last, lovely, Social Worker and when I called to say I needed help, was put back on the list for assessment (more time and money wasting bureaucracy).
My family carer has been saying for weeks they cannot support me anymore, which is fair enough. My previous SW said to call when it got too much for them. I called back in March to ask for that SW, to be told no, I had to be put back on the list for another assessment. I was annoyed, but it wasn’t urgent so I assumed it would just take a couple of weeks to be resolved.
They then referred me to a housing adaptations team, gave them the wrong address and wrong information (my current accommodation can’t be adapted, that’s why it’s temporary whilst I wait for somewhere appropriate). I called back and was told I would get a call soon to arrange the assessment.
A few weeks went by with nothing, and by this time my care really was stressing they couldn’t come any more (which I totally understand, they have a job and their own demands on life). So, I call SS again, stressing the urgency, and end up bursting into tears on the phone, worrying I’m going to end up without any help at all. I’m promised a call back that week – no call.
I chase again, and again both times being promised a call back the same day – no call. I end up crying down the phone to one of their staff again, who once again reassures me of a call back within an hour – guess what…
I then became ill (no surprise there), and during that time am left a voicemail to say I’m getting a visit next week – finally!
So after all that, I’m expecting a compassionate SW with understanding of my situation, perhaps a little remorse about how I’ve been treated. How foolish of me to expect to be treated humanely!
Instead, I got a woman who would be better suited to working in a call centre, deflecting complaints from consumers about faulty products.
Instead of the support I asked for, I’m told I’m getting a “Reablement” team to teach me how to do things for myself. Now, anyone who knows me will know I’m fiercely independent, I hate asking for help, and will only do so when I really need it. So I’m only asking for help with the things I really can’t do (washing up, getting drinks as I can’t reach the tap, cleaning etc). I was told I would have to be in at 10 and 6pm every day, even though I said I didn’t need someone to come in twice a day. I asked what happens if I’m out in the evening, “you’re not” she snapped, “if you want the help, you’ll be at home”. I soon realised that this wasn’t assistance that worked with you at all, it was on terms that were decided for you, and the ‘independence’ was their version and at their convenience. Eventually I talked her down to once a day, but I had to fight to get her to agree. I felt like I was naughty teenager negotiating the reduction of my grounding.
She then decided to note down that I was coping fine in my current accommodation, apart from needing help in the kitchen. I pointed out that this was far from being accurate, noting the width of door frames and injuries to my hands, difficulties getting in and out of the building because of the doors, the lack of disabled parking etc.
Again she snapped, “well you got through the door just fine then”. Once doesn’t make a rule love, if I’m rushing to the bathroom or if I misjudge the gap, I regularly bash my hands. More than once I’ve caught the door frame with my chair whilst carrying my dinner on lap, and then sent it flying, because you know, physics 😏
When I mentioned the parking, she immediately jumped on my being able to drive, as if that somehow negates the other difficulties I have. Getting out once a week in the car doesn’t mean I miraculously reach a tap!
I could rant on further about the many sarcastic comments she made, or subtle snipes about things I mentioned, but this
rant post would turn into an essay. I will conclude with the worst one, the phrase that despite knowing many misinformed people think like this, and being able to ignore it, I couldn’t brush off a professional coming out with this one. This came at me out of left field and I couldn’t muster a coherent response:
“You’ve got ME? Why don’t you work? I know people with that and they manage to have a job”
I just mumbled something about being too tired most days and still getting ill a lot.
I was so angry, I wanted to ask her to leave. I didn’t because I figured it wouldn’t help my situation if I did, but I think she could see how mad I was because she didn’t say much more and soon left anyway.
I’ve covered how people with chronic illness deal with lack of energy in my previous post, When The Drawer is Empty but this is another misnomer us Spoonies have to deal with, just because some people with our condition can do some things, doesn’t mean all of us can, we’re not robots, we’re individuals and our illnesses vary a lot! This article from The Mighty sums it up perfectly.
I guess I’m going to have to learn to deal with ignorance from all sides, but at the minute I feel really let down by the one service that I should be able to rely on. I’m still waiting for help, and don’t feel I’ve got anyone to turn to. The person I should be able to go to, I can’t trust.