Zoey is my third child, now 24 years old. She was the one we had to cushion Matt from the responsibility of having to care for his older brother, Jermaine.
We were not to know then that Zoey would have special needs all of her own.
Thankfully she is officially moderate needs which has meant there have been no health worries in particular but that she had significant developmental delay. ‘Delay’ is rather inaccurate as it implies there will be catch up eventually, this is not the case, she is what she is.
To get a better idea, her academic level perhaps reaches that of a 5 year old. She can come across as quite normal but, put any 5 year old in an adults body and they can come across as grown ups for a short time at least.
For the majority of her life Zoey has been no real issue. True, I may compare this to Jermaine who most certainly was a lot of trouble but, on the whole, she’s been very manageable albeit it is still quite difficult having a constant 5 year old around. She’s never really got to grips with personal hygiene so we’ve had to take over a fair bit there. Preparing food obviously needs a lot of input as well.
We noticed though that over the past several months there have been some changes in her. Nothing significant at first but slowly we’ve observed some weight loss, some excessive behaviours, some issues with eating generally. With the boys (my grandsons here) she used to just like playing with them but, over the last month or so she’d become overly protective of them. She would get abusive and rude to Sean & Daisy if they had to tell the boys off, for example.
This past month also we’d noticed a reluctance to wash at all and very soon after a refusal to eat or drink. More difficult to quantify is her lack of sleep which we now know to be considerable.
We got to a point a little over a week ago when her normally quiet and bubbly attitude turned violent and abusive. Perhaps before that even, days are blurring into each other now. So adamant was she that she was not eating, drinking or getting washed that she’s lash out at anyone in range who mentioned it to the point she needed restraint for safety.
The GP was called on two occasions, 28th August when anti depressant medication was prescribed that Zoey refused to take and again on September 1st. The second time the GP became concerned about her health and decided that admittance to hospital was the best option and order an ambulance to arrive within 4 hours. It arrived after 11 hours. It was the early hours of September 2 that Zoey was admitted.
We explained her learning difficulties going way back to birth many times to several different people as we also did with our current concerns. Daisy stayed with her the first night and Zoey didn’t sleep at all. I stayed with Zoey a second night when she slept for around 45 minutes. Despite on many occasions telling staff that she was special needs, that she needed significantly more attention than she was getting, nothing changed.
On Friday 4 I contacted the Patient Line (PALS) and got them involved. It turned out that special needs wasn’t anywhere at all on Zoey’s notes, they had completely overlooked it despite being told all those times.
The situation was rectified and she moved to 1 – 1 care from that moment onward. Even so, late that Friday Daisy and me were called to the hospital to tend to Zoey because they didn’t know what to do!
Since arriving at hospital she had to wait in a corridor before being seen for over an hour. She then waited on a trolley from midnight until 5am only being observed occasionally. At 5am she was moved to the Emergency Assessment Unit (EAU) to a private room which suited her well. In the morning they moved her out of their into the main ward where she went downhill fast. Before the day was out they’d moved to yet another location in the same ward. On Friday night they assured us that she would not stay back in a private room in EAU … how many moves so far?
We arrived early on Saturday morning to discover she’d been moved again! We’d been asked to go on the previous day so the mental health team could do an assessment at 11am.
We found Zoey the next floor up in this other ward, at least in a room of her own with a carer. We were all there by 10:45 to be told the person from the Mental Heath team was a little tied up but would be there by midday. She turned up a little after that.
We had a couple of hour long meeting with this stupid woman who would take no responsibility for anything
It was left no better off than when she arrived.
Early hours of Sunday morning and we’re getting another call from the hospital to go in and deal with Zoey who was trying to leave the hospital. They had no powers to restrain her so were hanging on to her by nothing more than a little one-upmanship.
We eventually got her back to the room and I asked for the emergency mental health team. They arrived around 4pm and eventually agreed to do a section 5(2) which gives them 72 hours during which time they can enforce Zoey staying there but have to arrange a full assessment.
They then left me with a telephone number to call to start the emergency assessment off, they wouldn’t even take responsibility for that!
So, that’s how it is now. Zoey still isn’t eating, sleeping, drinking or washing. She’s lost all this weight.
She’s begging me to take her home every time, it’s stupidly upsetting. There is nothing I can do, she has to get well again and were ineffective here now. She will promise all sorts to get home but won’t deliver any of it. I said to her earlier, drink a cup of tea and I will see what we can do, she promised she would and then, when it was offered she refused to even hold it.
We shall see what tomorrow brings.
My priority and driving force is and always shall be what is best for Zoey but, if only life were that simple.
Because she is now an inpatient at the hospital I need to contact all those I get benefits from. I will probably have those benefits stopped quite quickly. So, in the meantime I lose my status as a carer. I will be expected to look for work. But, if I get a job and Zoey then gets better, I will be expected to be here and take over again yet they will likely take months to put the benefits back in place again. If she never comes back, I have other long term worries which I am not going into here that make me really sad. I am not afraid of work but this one wouldn’t be sorted by me working or not.
So, that it for now. Just when I am feeling the most optimistic and stupidly happy I have ever felt, along comes this to knock me down again.
Trying to stay positive, it’s not easy, not on my own. I need the man I love by me and that is just not going to happen any time soon.