Zoey Update 30/09

4 Hours out of my life and what a waste of time. OK, not entirely a waste of time but any gains were coincidental.

I was invited to go along to a meeting at 3pm, the meeting started at 3:50!

The section 2 expires for Zoey at midnight on Tuesday so you’d think the professionals would be in a mad panic to work out what is happening next but, no, not one of them came to the meeting today with any clue what is going to happen next week.

How is this for logic:

They cannot lawfully keep her there as of midnight Tuesday, that’s not possible because there is no section 2. They cannot issue a section 3 without having a game plan on what services to provide, they know this. The services she needs cannot be provided to an adequate level where she is, they know that too. They want her in a LD unit in Kettering except, that is unsuitable because it is all male at the moment and all have challenging behaviour incompatible with Zoey’s best care. Even so, the LD Psychiatrist today said that a bed might be free there in two weeks time! She said it like it was the solution they were looking for until I pointed out that it would be two weeks after they are required to provide somewhere AND, there would still be 3 unsuitable male patients there.

I mean, this isn’t rocket science, do intelligent people lose all common sense?

They kept going away to have their little secret meetings. The final of these was passed on to us by a third party as the two psychiatrists didn’t want to talk to me again. They’ve decided that Zoey needs a section 3 order but that they don’t have anywhere suitable …. at all! They’ve had nearly 4 weeks to come up with somewhere suitable yet now, with less than a week to go, they don’t got anything and having started to look out of county!

On the plus side, me and Anne met Mike, the advocate who has been appointed for Zoey today and we were able to share with him out concerns and he’s putting a safeguarding complaint in. He agreed that what they’re doing there is a form of abuse, most certainly neglect.

The experts still can’t seem to agree whether or not Zoey lacks capacity, not legally. They say that clearly she isn’t able to make judgements on her own care but they’re not sure this constitutes legal lack of capacity! In the meantime, whilst they ponder this, Zoey is getting medication for her UTI. On the subject of the UTI, the nurse in the ward says she’s only had it since yesterday! I had nurses with years of experience telling me they suspected an UTI when she was at Northampton General Hospital! For some reason, Berrywood Hospital have decided to overlook the query on the UTI which would have been in her notes and declare it’s all somewhat new so not desperately urgent. Apparently, UTI’s can have all sort of behavioural consequences too but, no matter, they’re still not sure they can force medication so we’ll let that go then!

I am very strongly considering adapting the house here to have her home again. I am running out of alternate options!

Zoey Update 29/09

I become more convinced each time I explore the actions at the Berrywood Hospital that their actions are negligent to the point of abuse.

They are ignoring the plan they were given by the LD team making statements that no one tells them how to run their wards! That statement from someone who is not LD trained, on the day in question, neither was any other staff member LD trained.

Zoey is being left not monitored for over an hour at a time. Her bed is soiled but no one is changing it. She’s been diagnosed with a urine infection but because she is refusing antibiotics, this remains untreated, she is sectioned remember. Under a section 2 order someone can be medicated against their will except in extreme cases such as ECT. There is no reason on this planet why Zoey is not having her infection cured other than negligence.

When I asked the head nurse the other day whether they were being slow in offering treatment in the hope that Zoey would be moved elsewhere she replied that she believed it was not the best place for Zoey … now if that doesn’t answer the question with a resounding ‘yes’ I don’t know what does!

It’s clear she doesn’t neatly fit in with what they are used to and they want her gone.

It’s disgusting, it truly is.

Important meeting tomorrow to discuss these issues

Prayers

Last night, being alone in my house, I thought I’d say some prayers out loud, I mean, normal conversation loud rather than those late at night whispers.

I’m not stupid, I just asked for life to go a little easier on me, allow something good to happen without the hell to over compensate for it.

Feeling pleased with myself that I felt comfortable praying out loud I sat down to watch TV and realised I couldn’t focus on it at all. Then I realised I actually could barely see the TV! So, first signs of a migraine, great! Managed to control that with medication.

Today, cooking dinner, couldn’t smell the wonder aroma of a Sunday Roast at all so went down to investigate, the oven wasn’t working!

Thankfully, we have a top over, a fraction of the size but it still works so, dinner is getting cooked now.

Am just wondering, I mean, I didn’t even ask for a sign that anyone was listening, I just trusted. Is the answer really that I am meant to always have to work so much harder than anyone else would, pay a far greater price for every pleasure than others seem to? Don’t get me wrong, I really appreciate all the wonderful things in my life but, really, do I need all the stress as well?

Basically, I am confused how this all works.

I am bowing out

At least for a while.

There is only so much I am able to take and whilst Zoey is somewhere she is being looked after, I don’t need to go there to be abused, I am taking a short break.

Quote from Zoey:

“fuck off and leave me alone you bastard” …

She said quite a bit before that but this was after I was explaining they were going to start making her get better there. Trying to let her know that we love her dearly and actually don’t have much say in anything any longer. All I could do was let her know she’s loved and I can’t do anything more to get involved in her care, it’s up to the professionals now.

If there is anything positive it is that they finally got to comprehend the level of comprehension and communication skills Zoey has. They can’t pretend she just doesn’t understand any longer.

I got the distinct impression I’ve been taken out of the loop. They don’t have to consult me so they won’t sort of thing. An advocate is being brought in now too, seems my opinions are not valid enough.

After screaming her insults to me, Zoey was quietly escorted to the arts and crafts room to do some fun activities. I cannot even start to say how that made me feel, how I still feel.

Tough Decisions

The situation with Zoey doesn’t look to be resolving any time soon. I have to stop burying my head in the sand and hoping it will all go away and life will get back to normal. I’ve got to face my worst case scenario.

Zoey isn’t coming back and Sean & Daisy may well be moving out.

Annoyingly, I didn’t quite clear all my debts yet, stupidly close and, if things don’t change it’ll be fine but, things have changed and most likely will change more.

Zoey’s benefits stop on October 4th, that is in just a week and a few days time. Once that happens, all is not lost but I am struggling. I’ve switched my Caring role onto Robin as he says he needs me about but, doing that has cost Robin £40 a week, I need to make that up to him, he might say not to worry about it but that isn’t good enough. ‘I’ need to sort that. By the end of October the car gets cancelled too. I am trying to remain positive whilst being realistic too.

I could wait it out, Zoey might get better this side of Christmas and everything will ‘eventually’ be OK. Regardless of anything else I am going to the Philippines, the ticket is booked with no chance of a refund and I’d not cancel it anyway, it means everything to me getting to see and be with Dennis even if it is just for a few hours every day. Whilst I am there I have to make a decision. Do I just tighten my belt to a level the maths doesn’t really work for or, do I try, at my age, to go get a job?

If I opt for getting a job, the only real option as I can see at the moment I need to get one and get one with the prospects to have me earning some £20,000 by 2017. If I start down that road then, realistically I am saying that Zoey cannot ever come home again. Of course, I am 52, what are the chances of my getting a job at my age? I guess I shall have to find out. That’d be £9.80 an hour … hmm, I am just going to have to find that something! If Sean & Daisy move out I could also find a lodger, that’s potentially another £3,500 a year. On the off chance I can get someone to hire me at all and the job has prospects, I’d be doing OK eventually. Sure, for a couple of years it’d be a struggle but I’d be OK. When Dennis comes here and starts earning, we could live very comfortably indeed.

Oh my …. writing it down there it seems my mind is already decided. Either Zoey is home by Christmas or, she most likely doesn’t come home unless I fail to get a job! That sounds terrible, really uncaring but … dammit, she was never going to stay living with me forever anyway and it’s always my intention to get a job some time in 2017 too, it’s just going to bring forward the inevitable and, perhaps, with all this attention, at a time when she’ll get the best deal.

In the meantime, I might have to adjust my plans for immigration and the Philippines. If it all goes wrong I can’t keep paying money into our account over there, I will just have to find out what the minimum we could get away with is for a successful visa. Perhaps we’ve overestimated. I might have to ask Dennis to get some reliable advice from over there, here is likely to be too expensive.

Whatever is thrown at me here, I am resolute about one thing, my future is with Dennis, even though he’s not physically here, just knowing he’s out there loving me helps me get through each day. If God is telling me anything it is that I should not ignore what I have been given. I know very few people more connected to God than my very good friend Steve C and it was he who told me to follow my dream and go out there in November, perhaps he too was sent to guide me. There is no point in saying prayers each night if I don’t follow the signs I am given.

If Zoey can and does get better and playing it safe remains and option then, nothing lost, if not, I think I shall rise to the challenge of restarting my life after 23 years of full time parenting and caring.

Dennis, don’t get worried about this, you are part of the solution, not the problem. We have to have faith that things are going to unfold if we stick together and find a way ourselves. xxx

Zoey Update 22 September 2015

I am told Zoey is showing signs of improvement. She is eating more, she is … well, I am not entirely sure what else precisely it is she is doing above and beyond that.

She is barely drinking and her blood pressure is constantly low. She is in effectively a nappy (diaper) now because she’s decided she doesn’t much want to use the toilet any longer. She is still screaming at people and being violent when it suits her.

Most of this I know from what I am told.

Just about every time I am there I get virtually nothing and, why do I get virtually nothing? Because of ‘Susan’. Don’t get me wrong, she’s a nurse and probably a really good one. She’s been doing her job for many years and, so I am told, does manage to get Zoey to do things. The thing is, whenever I am visiting I don’t get to spend any time with Zoey without this woman being involved like she’s family. Every time I try and talk to Zoey she’s listening and comments when she feels the need. I am using my years of experience with my daughter to encourage her to interact with me and this damn woman is suggesting I perhaps get her to drink something! I spent 40+ minutes with Zoey earlier with her facing the wall away from me laying down in bed. I just started to get her smiling then she turned to face to me as though she was about to say something and in comes Susan, sits herself on the chair next to me and says excuse her coming in but she really wanted to hear Zoey speak just to hear what she sounds like! Zoey immediately turned to face the wall again, moment lost. Each time I’ve visited recently she’s been there and it’s driving me nuts. I don’t want anyone there feeling bad because I’d worry then that Zoey wasn’t getting their best attention but, at the same time, it’s making me feel all the more like utter crap!

Just lately it feels like I am unable to help anyone. I also feel stupidly alone. You know, I want someone, not because I’ve asked but because they thought about it, to ask me out for a coffee. But, that’s not happening.

There are issues going on in my life here, serious long term issues I need to work out which affect the direction the rest of my life goes in. If Zoey doesn’t come home and soon, I have a serious problem. My main focus is that Zoey gets better, I love her to bits, she’s my daughter but, I’d be totally mad to ignore the consequences of the timing right now on me. If she doesn’t come home then, my next couple of years have the potential to be the most difficult and challenging of my life with no guarantee of success.

If only the Philippines had recognition for same sex relationships, grrr.

So, one aspect of my life is the best ever, the other is absolute mess up.

Clearly everyone wants me to answer that Zoey is doing great we’re all optimistic and life is good. Sorry to disappoint you. Right now I feel like I am losing my second child to something horrible and I can do nothing about it.

Keep praying people x

Zoey Update 16th September

After my causing a huge fuss on Tuesday Zoey was finally moved to Berrywood Hospital in Duston.

She stayed over night in Harbour Ward for assessment but tonight she moved over to Bay Ward to start the much needed treatment phase.

I have zero idea what that entails at this stage, communication is a little patchy so I need to find out who I should be contacting for updates.

To the best of my knowledge she is eating, not sure how consistently but she’s eating and occasionally drinking too. Am totally unsure if she’s using the toilet as she should be yet though.

She’s had two visits today, this morning from Me and Daisy and this evening from Matt & Anne. Both those visits were good ones where Zoey was laughing and smiling.

They are more strict here, it’s not a case of just wandering in so, if someone wishes to visit, please let me know and I’ll give details, make sure someone else isn’t already visiting then as they have a strict 3 visitor maximum. If anyone wants to take under 18’s then they have a family room but this needs to be arranged in advance.

Not a good day :-(

We decided to take the boys back to see Auntie Zoey this morning, they were looking forward to it.

She gave them an initial hug but said nothing. A quick smile and that was that.

We spent 40+ minutes with her during which she didn’t engage at all. She responded to her name, knew we were talking to her but didn’t vocalise at all. We eventually left and Danny was crying because Auntie Zoey wouldn’t speak to them.

They’ve also learnt that not eating and drinking leads to death and both the boys were really concerned that Zoey still refuses food and water.

In short, both me and Daisy felt stupidly guilty for taking them, I think we both knew it would be a risk but had to try it.

We were called yesterday and ‘maybe’ a placement has been found for Zoey at Berrywood which is not so far from here, just under 2 miles. ‘If’ she goes there then it will be on Monday. I really don’t have much confidence in the system at this stage.

Had a lovely chat with Dennis.

For oily skin try this Site for we know who.

This afternoon I must confess the boys have got a bit much for me. No ones fault, just kids being kids. I am in need of some reasonable quite time, I’ll settle for muffled 🙂

Stress Levels … I was reminded

I thought that my ability to cope was second to none. You know, yeah, shit happens but it doesn’t phase me, I’m good me.

Earlier on, this woman visits, a nurse type, quite nice and she’s here an hour or so talking about what her and her team are going to do for Zoey and it’s all good. Then she starts going on about how we’re coping, how difficult it must be, how we really need support at this really difficult time and I’m thinking … Eh? No, I’m good thanks, I don’t need anything, I am dealing with this shit, this is water off a ducks back to me, autopilot stuff.

So, she left but then I started thinking and remembered that thinking isn’t what we do when we’re in this situation, thinking is bad. But, I allowed myself to think for just long enough to start wondering if I was coping OK and, it was a little scary when I realised that … Despite my outward appearance (I think) of dealing with this all rather well, I might actually, just possibly, be doing a hell of a lot of internal screaming.

Now, that thought didn’t last so long but, clearly long enough to unsettle me and I don’t got time to get unsettled.

Reality is, Zoey was never going to be the one I had this huge issue with. Everything seemed smooth sailing there, nothing that I couldn’t easily sort out given some time. So, where did this come from?

Just when I think I’ve got things under control, I can see where this ship is heading, I go and hit this iceberg!

Don’t get me wrong, I am still 99% coping really well, there is now, thanks to this nice lady, that little questioning voice which wasn’t there before, just that tiniest of little squeaks making me question some of my decisions. Hmmm. I still think the glass is half full but I am questioning the structural integrity of the glass now!

It’s quite funny really, I am smiling as I write this. The total contrast between what is likely and what I am still convinced will be the outcome. I still cannot accept an outcome where this all goes tits up.

Thankfully, because I’ve always had this quiet faith I don’t really speak about, I am left feeling curious wondering what is going to happen I’ve not yet thought of, it’s almost exciting. I cannot believe I’ve got to this point just to lose everything.

Anyway, just thought I’d share those thoughts with you.

For the record for Friday, I am planning on being able to spend some quality time with Dennis tomorrow. Though I sometimes doubt whether I deserve Dennis or not and I wonder how on earth he can have any feelings at all for me, I don’t question how I feel about him. How he feels about me I can’t change and have no right to question, he may well wonder why the hell I love him to bits too! People are such a funny species!

Dear Lottery

If at all possible, could you maybe send around £75,000 my way. This would no solve all my problems but it would make my future very happy indeed.

Of course, should you, dear Lottery, see fit for a few £million then, I could use that very sensibly and generously.

You see, I know a few people both in the UK and elsewhere whose lives would be changed completely by not a lot of money sent their way.

So, if you could possibly, just swing some cash like that my way, I would be most ever so grateful.

Zoey Update 9th September

I am going to compress this as much as I can.

Over the last few days I have been pestering rather a lot of people to get off their fence and do something for Zoey. I’ve had Health, Social Service and Mental Health all stepping backward trying not to step up and take control. As a consequence of that, Zoey has received only observational care. No way am I knocking what has been done for her on the ward but their hands have been tied. Without any legal back up all they could do was observe and watch Zoey get steadily worse.

I kind of blew a mini gasket earlier and insisted that I’d not allow matters to go one more day. If they didn’t do something today I would be raising at the very least, a complaint of neglect of duty.

After nearly an entire day of waiting around with Matt we finally got the decision that Zoey was sectioned under section 2. That means they can now do what they need to do in Zoey’s best interests.

By the time we left they were querying whether or not Zoey might be suffering some sort of organ damage/failure. They had managed to get a cannula in and were pumping her with vitamins and fluids.

The issue is, once her physical health is looking better they want to transfer her to a mental health ward and, as things stand, there are none in the county so they’re looking where in another county she might go. Our argument is, why not leave her just where she is and use the mental health resources they are already planning to put in temporarily as the best practise way of getting her better rather than move her many miles away from family. They agree it makes sense but then argue that they’ve not done that before and don’t think they can do it … find me a wall, I’ll keep hitting my head on it!

Daisy was a great help yesterday getting Zoey to partially attack a McDonalds meal, Matt was great today with a meal for Zoey and he also had a lot of help from Dennis, yes, already from the other side of the planet Dennis is helping out trying to get Zoey better. Isn’t Skype a wonderful thing! Anne & Sean have also played a significant and important role. As a family we’ve all stuck together and it was lovely to have that acknowledged up the hospital today, very nice indeed.

Family & Loving

Repeated on Facebook

At the moment, some of you might have noticed, we’re going through a difficult time.

Life is about difficult times too. What happens when a family goes through a tough time is one of two things, they blow apart or they stick ever closer together.

I am so incredibly proud of how my family has stuck together. I honestly believe that we are all the stronger for the tough times we share and it helps us appreciate the good times.

For me, also, it means a lot, I mean, deep down a lot, to have my extended family in the Philippines. Dennis and his family and friends. His mum writes me quite a lot and I know they say prayer there too.

Over here and around the world I have friends saying prayers all over the place, Steve & Rosie down in Kent, Jonny over in NYC, Daniel in Atlanta.

Those who don’t have a faith are still talking to something or someone asking for help even the total non believers.

What will be will be. I have to trust that this works out even if now we have no clue what the outcome will be.

Sure, it’s more upsetting than I can put into words to have your little girl begging to come home and having to walk away. I’ve actually done it all too often with my kids, had to push them away, it never hurts less. I carry the guilt every moment of every day. Knowing it is the best thing for them doesn’t make it better, it just rationalises it.

Don’t get me wrong, I am not feeling sorry for myself. I am fairly certain I am just voicing what every parent goes through to one extent or another. You know, the first day at school walking away when they have tears running down their face and we’re bottling ours up because we need to be strong for them … wow … worse yet, when they give us a big smile and turn away without a care in the world and we still have that lump in our throat because our little baby is growing up … ouch.

Whoever said parenting is easy is probably a man and he probably works and only sees the kids at the weekend! But hey, I am not stereotyping here, if that applies to you and your not a working man, put your hands up if you think parenting is easy!

We’re going to be OK us lot, all of us, there is love there. No one goes through this much muck in their lives without working out that sometimes we need a little manure to help us grow as people!

But look, your worries might seem small compared to ours but they are big to you, it’s all relative. Someone who has never been ill might think they are having the worst experience on earth when they have a cold and to them, that’s the truth. It’s not a competition. We will all at some point in our lives know someone worse off than us. As my youngest said to me earlier and, I shall paraphrase … it doesn’t matter if I am always in pain with headaches dad, if you have a headache then you have a damn headache!

I cannot wait to welcome Dennis into our family … of course, he’d have to ask me to marry him first but, if he did, I’d really give it some serious consideration.

Zoey will come home to us, it’s all going to work out

A very Traumatic Week

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.