Pissing Hell

So far today I have cleared up a lot of piss and I somehow doubt I am finished yet!

Jermaine has pissed on his bed three times so far which has meant three lots of bedding having to be washed. He won’t come downstairs and, well, probably for the best as he just seems to want to piss everywhere right now making no attempt to use the toilet at all.

That is three wet beds but he has pissed his clothes another two times as well.

I have washing backing up yet am concentrating purely on his mess.

The carers were here this morning. One arrived on time, the other was 10 minutes late and it took another 15 to tell them what to do and answer their questions so I was late by 25 minutes for my break.

The nurse was booked for midday but didn’t show until nearly 1pm by which time Jermaine had seen his lunch sitting on the side and got well and truly angry so was in no mood to eat or have injections by the time the nurse showed up. Thus started his pissing spree.

I did have a nice bacon butty and an Earl Grey locally and nipped into Frankie & Bennies for a vanilla cheesecake and cream later which was most agreeable. I planned to see a movie but because the carers were late I was too late for the start of it so had to pass on that one, maybe tomorrow.

I asked Nick to call round in the evening as I am fed up with being bored but it rained, OK, it stormed so he wisely decided to stay at home which left me on my own again (naturally .. *hums song*). I decided to watch a movie but the storm blew out the satellite signal, so much for that. I decided to play *my* keyboard but it wouldn’t turn on.

Thankfully, when I decided to go to bed my bed had not run off with the wardrobe!

Tuesday so it must be health - as usual, not mine

Today was the important meeting with the health department to discuss an assessment for Jermaine at Hargrave House in Rushden.

I was called last week to be told that Jermaine would go in this Monday (yesterday) that was then corrected to say, probably Wednesday and altered again today to say defiantly Monday but that I had to get him there. OK, not a problem.

During this meeting we discover that he is definitely going to be there for at least 28 days but possibly less. He would not go back to school for 2 weeks and after that we have another meeting to discuss exactly how long he is in there for; they may even section him to comply with the mental health act requirements on restraint and evasive treatment. In order to know if they have to do that or not they have to do a mental capacity assessment, basically to find out if he is capable of understanding and, as a result, give informed consent to anything.

What I expect to get out of this is a bit of paper that says “Hey, his dad was right all along” and if I don’t get anything else, that will be invaluable.

It won’t give me any more support within the health environment because health simply does not cater for carers but only clients. To them, as long as Jermaine’s needs are met they are fulfilling their remit.

How do I feel? Well, depressed in many ways, not least because long term this doesn’t really offer much. Even with that letter describing Jermaine in great detail, no one shall feel obligated to do any more than they are currently doing.

On this, which is the week I was meant to have respite, social services have offered two four hour sessions at home from 10-2pm. I suggested to the social worker earlier that she may want to consider including a third day in that equation and she said she would mention it but I doubt very much she will. The carers tomorrow will have little or no idea about Jermaine so any hope I have of getting away in the first hour seem remote and then I expect they may well call me several times to find out what they are supposed to do. I really don’t expect any sort of break. By an amazing piece of management, I will no doubt get different carers on Friday and have to go through it all again!

I am still feeling very lonely and forgotten here, seems all my friends are busy with their own lives, and that’s fine, but all the same, it’s tough here and I am really not as emotionally strong and able to cope as most seem to have some strange idea that I am, not a day goes past when I don’t ask myself if it is all worth it?

The only 'single' gay in the village

It is really quiet here with just Jermaine. Thankfully he is in an OK mood this morning so not so terrible but time is really dragging not being able to do much.

Finding out that I am rapidly becoming the only single guy I know and with little prospect of that changing, life is a little depressing just now, all work and no play at all.

Could well do with a good massage and a little fun though I think I have forgotten what to do!

All plans for this year are on hold so nothing at all to look forward to except going to stay with Gary and Tom for the weekend

The start of being alone with J

Totally knackering drive from home to Twickenham to Basildon and home again. The day was OK but ate too much and very tired.

Respite Still not sorted

It’s not possible, as far as I am aware as to how to do an accurate scream in text form so can you, the reader, insert a scream of your choice in this box please? [ …….. ]

I was just earlier in a very long meeting with social services and health, duration of some 2 and a half hours, and it was predictably a meeting to arrange a meeting.

We have moved into a different spectrum now of social worker, now we have 4 layers of management turning up to meetings, heaven only knows how much money is wasted by this amount of staffing but I should think it were substantial.

Much of what was discussed were items already raised and not acted upon in previous meetings.

At this point I acknowledge just how dull this may seem to anyone not fully aware of our family situation and the inner working of social services and health … I shall try to elaborate as I go along.

To place a summary we can say this:

Social Services agreed over a year ago that we are entitled to 70 nights of respite in a residential short term centre per annum.

This conclusion was reached virtue of a very badly done carer’s assessment and an assessment for Jermaine but mainly the latter. We have just in the passed month submitted a revised and far more comprehensive carers assessment which has highlighted far more need than the original so we can safely say that the figure of 70 nights should be seen as a starting point and not a definitive to respite requirement.

As of this day we still have 42 nights of that allocation unassigned and unlikely to be assigned because Jermaine has a need for near 24 hour nursing care and no establishment within social care has nursing care provision. The PCT (Primary Care Trust) will no longer provide a district nursing service as their nurses have refused to work with Jermaine because of his very difficult behaviour.

Health have assessed Jermaine as meeting their criteria but can realistically only offer one week per month running Monday to Monday and that week would be a week of their choosing unless adjustments can be made which cannot be guaranteed and cannot be applied for more than 3 months in advance. They claim to have no obligation toward the family (carers) at all and only meet the needs of the client. This does not excuse social services from their obligation to the carers but this fact seems to be continually overlooked. I am looking into their legal obligations but suspect they have none and these will transpire to be just guidelines.

Just a couple of hours ago I was informed that Health has agreed to take Jermaine into one of their assessment centres in Rushden for a period of at least 4 weeks but possibly longer. It would appear they can keep him as long as they feel there is a requirement to complete their assessment.

The main issue here is, and I acknowledge this needs to be done at some point, if he is in there for more than 28 days then the benefits we receive for him cease. If the benefits stop, in theory I need to sign on as able to work which is, in reality, a lie as I need to be home for when he returns again. But during that time all benefits get screwed up and we will have to survive on a very small income until it balances up again. There is a solution, I could transfer my claim for Carers Allowance from Jermaine to Zoey, and this would appear to be reasonably simple using a boring white ‘mini form’ to change names and it could all be done within a week. True, the income support side still need sorting but at least it is they that would owe me money, not the other way around.

My head is currently spinning. In a best case scenario we get a break from Jermaine for 4 weeks and lose no money and hopefully something is in place after that to prop up respite provision. I feel that is overly optimistic but we stupidly live in hope!

Fancy a Coffee?

This will only mean something to anyone that knows Tony as I do but I hope others will feel the same way as well.

Fancy a coffee, my treat?

Yes, I fancy a coffee

For the life that you led me to, I fancy a coffee

For the confidence you found in me, I fancy a coffee

For the fun times doing things I would never have done, I fancy a coffee

For your tenderness, I fancy a coffee

For your love, I fancy a coffee

For you, I fancy a coffee, my treat.

'Fancy a coffee' is one of those phrases Tony has when he actually wants something else like a rest or a ciggie, sometimes even a coffee!

A day to unwind

Yesterday I had my ex in-laws here and it was an OK sort of day though I was feeling a little tired toward around 7pm. Jermaine tried to hit his nan but was otherwise fine and it was mainly because she made him jump.

I didn't get up until gone midday today and I am pleased to say my hands have not been quite so painful but almost as useless, my typing is actually crap but this is my 2 finger tidied up version.

It's an OK day, not a lot going on and nice to just relax for a change and catch up on some paperwork.

Been thinking a lot about Tony and how Pete & Danny are coping but I have to be realistic, I cannot be there or on the phone all the time.

It's good to have Robin to talk to

Overdoing it

It has been a nice day today but has also proved to be just how unwell I am.

Got up early to go and meet Seb down town and had a really fun time. It was great to laugh a lot and be on the same wavelength as someone else. Annoyingly, because I think Seb and I could be really good friends, he is probably moving back to France again soon so I may only see him one more time before he goes and I am a bit gutted about that.

Drove over to Robin’s after that and took him some new mugs. I figured it is always nice to have something new and fresh in the house and it is kinda of a way of me being there when I can’t be too.

Memo to self: Cut Robin’s hair … no, I am not obsessed with hair, I just seem to be OK at cutting it and it needs cutting.

I got back here with good intentions to do some housework, cook dinner etc but I was so shattered I just needed to go to bed. Very pleased to have the chance to speak to Danny first though.

Daisy was really good earlier. She cooked dinner without complaint and then did the washing up afterwards without complaining as well so I gave her £2 as a reward. Rewards are not assured here as then it would just be a payment for a job and I don’t believe families should do that. But every now and then when someone does something really nice or unexpected, it’s appropriate to show some appreciation that is tangible.

Oh, I started this by saying how I was overdoing it. I still need to though, I can't give in to illness, it's not me.

An end to this first week at home

Paul left this morning and this afternoon Jermaine arrived home from a totally terrible cock up of nearly three weeks of respite.

It’s not worth writing all about it here as, well, to be honest, I don’t know all the details myself yet. Suffice to say that he was messed about a lot and it was all totally avoidable.

With all that, he still managed to come home with a smiling face and eagerness to hug; it was such a relief to get him back like that.

At the dentist, I saw a different one, I had to do some negotiating as what this guy was saying was different to the last story I got and my natural distrust of dentists made me want to be sure before I agreed to anything.

Daisy wanted to go along with me and I couldn’t see any reason why not and I am so glad she did.

The dentist convinced me, with demonstrations and explanations what he needed to do so I allowed him to proceed. I needed a major descaling which hurt like hell. This was where Daisy proved so vital to me. She noticed me in pain and immediately grabbed my hands even through she almost passed out when she saw how much blood there was, both Daisy and Matt have real issues with blood yet have to deal with so darn much of it. Anyway, had she not been there I would have screamed and run out, she enabled me to get through it and I am so proud of her.

It turns out that I have a major issue with a wisdom tooth and it needs to be removed, so, something wonderful to look forward to. The dentist also found a large chunk of debris the size of a petit pois in the cavity caused by the wisdom tooth which was causing me a lot of pain and removing that has also enabled the mouth to open a little more which is wonderful. It’s not a vast improvement but at least it was something and maybe the antibiotics can do the rest.

Earlier I had to sort out Jermaine’s meter as the measurements and loads of other settings had been screwed up. To be certain it was giving the right readings I tested it on myself and got a reading of nearly 11 (should be 5-7) so I decided it was probably not calibrated right … then I had a thought that maybe it is and it is actually me that is not right so I tested both Daisy and Matt and they were both normal. Bugger, just what I need, diabetes on top of everything else! I shall test myself over the next few days and see what happens.

Paul

My friend from Dagenham, Paul visited today and I was so hoping I had felt better than I did. In fact, I woke up this morning hurting like hell. Annoyingly one of my antibiotics has a side effect of buggering about with my circulation. Of course, still can’t open my mouth either.

Anyway, Paul and I spoke, most of which I can’t repeat because it is confidential. But I think we both conveyed how much we have loved each other for years. I am not sure that means the sort of love that leads to a relationship and my condition certainly stopped me from trying anything physical though I really wanted to.

It concerns me that Paul is not well yet he is frightened to go to the doctor to get sorted. He could so easily get himself fit and healthy again yet is fixated on old wives tales of the past to how his sort of problems are dealt with and it is really so much easier now. I think I managed to convince him that 42 is not old though!

So glad ... today turned out better than I dared hope

I had a lovely day today.

Went over to Tony’s, the whole of Castlethorpe will forever be Tony’s place to me. I was greeted by Danny and Tom soon joined us. I also met Tony and I was dreading that as I so didn’t want to be blubbering knowing how Tony doesn’t really do outbursts of emotion well and, thankfully, I was just so relieved to see him at all that I simply enjoyed his company and had a small giggle with him and it was nice.

Danny cooked a Jambalaya which was gorgeous and I followed that with some ice cream thoroughly enjoying both.

Tony looked amazingly well, even with his illness he still manages to ignore his age and be ‘Tony’, he is truly amazing, such an attractive man. I didn’t check but he probably needs a haircut!

Tom will always be great and another of those that does not have an age. I know how old he is but he doesn’t live by his age, he is a person that can rise above numbers and I have a great deal of respect for him. I know he is going to, if not already, find it tough dealing with the whole situation he is in right now.

Danny is family and I love him dearly. I wish I could do more to help him through this and will try my best to do so, he is a total rock, we are just so similar he and I, hurting like hell inside yet still able to get through, cope in ways that others can’t. I get strength from him and I hope he does from me too.

Tony

Last night I took the kids to McDonalds at Sixfields. Just a normal trip, well, normal except for me not being able to eat anything. Well, it soon turned out to be far less than normal when I pulled into the cinema car park where I normally leave the car. Sitting on the corner was a red Volvo estate car, an ‘E’ reg and suddenly the gravity of what Robin had told me about Tony struck home and I was totally gone, weeping like a baby. Not even sure how I managed to park the car I was crying so much. Matt was amazing, he lent over and just hugged me and Daisy stroked my hair … when did I deserve such great kids? Anyway, I gave up trying to stop myself and just sat there weeping in McDonalds, I considered I had the right.

Tony is one of my closest friends and I probably owe him so much more than any other for the way he turned my life around.

We met in the summer of 1998, he was the first openly gay friend I had, well, I mean ‘real’ friend and not just an acquaintance. He was kind to me, he was understanding and so gentle. I was struck by just how ageless he was. I don’t know if I knew his age at the time but it certainly didn’t enter my mind, he was Tony, my friend right from the start.

He introduced me to so many things I had not done before, some I liked, others I didn’t but he made me not afraid to try new things for the first time in my life and as the years of knowing him passed my confidence grew and I became the person I always wanted to be.

To my eternal gratitude he introduced me to some people I am also proud to call my friends, guys I know now I would never have known had it not been for Tony and I know his strength and personality have likewise helped so many others, that’s the kind of guy Tony is.

I am not going to pretend we have not had our moments of falling out and I am sure there are things I have done that have totally annoyed Tony as much as those that he has done that annoyed me but, when there is as much love as there is from me to him then it is easy to forgive, the good always outweighs the bad.

If he has faults I would list the top two as smoking too much and not showing or sharing his feelings though I can understand and respect both.

What I really cannot accept is that there will ever be a time when he won’t be around.

To be honest, I am not sure if there is an after life or not but if all it is could be the memory of us that our friends have and pass on, it is going to be an awful long time before Tony is not around, we shall be thinking of him and, more important, loving him long after he leaves us. I shall always love him and so will my children, they too will miss him terribly. Forever when someone asks … ‘do you fancy a coffee?’ I shall think of Tony as that is always his way of saying, I need a ciggie or a break, lets compromise!

Tony, I love you so much and am so glad that tears won’t smudge the text on this screen.

Pete and my mouth

I was so glad to get to see Pete today and to be able to help if only a little. I feel so much for Pete that it hurts. He must be going through so much pain just now and he has already been through so much and just when he was celebrating getting rid of the happy pills, along comes the big ‘C’ to screw things up.

Love ya Pete.

After Pete’s I got myself to the hospital who referred me to a dentist and he did a lot of poking around before telling me I needed some other antibiotics as the ones I had were totally wrong. To say it hurt is understating the facts. He told me to come back on Friday and see what progress had been made

As it stands I still don’t know what is wrong but am in a lot of pain and still can’t open my mouth more than a fingers width and I have small fingers.

Thanks Robin

A huge thanks to Robin for taking us too and picking us up from the airport and telling me the news than Tony has cancer. He is a total star.

The news had not sunk in when he told me but I could feel his pain in having to tell me and he handled it so well, I adore him immensely.

2nd Week Day Trips in the Car

The second week we were sick of walking so we rented a yellow VW Beetle Convertible just because it looked dead trendy!

These are the trips we did in it …

Roque Nublo, the old volcano of the island and it was amazing because for the first time ever it was totally clear. We had excellent views over to Tenerife and Mount Teide and Maspalomas. The air was thin but clean and just a little cooler then lower down … I think even Matt, who, in theory would have the place flattened in favour of a theme park, seemed to get some enjoyment from it.

Puerto Mogan is a small fishing village that has been theme parked into something totally different. Not in a bad way, it is still very attractive, maybe even more so than originally but very obviously worked by developers rather than time.

I had the weirdest steak ever cooked in strawberries and banana which was strangely enjoyable. Daisy had some fresh tuna and now is convinced she preferred it from a tin. Matt and Zoey had Paella but I doubt either will be in a rush to eat it again.

(By now my mouth had stopped opening to more than 1cm which was making eating extremely problematic).

We did Palmitos Park where I and Matt were impressed to see a Komono Dragon, not as large as perhaps we would have liked but at least in the flesh (or scales) so better than TV. The fauna and flora was amazing, it seems to have grown so much even since last year. We also spent a lot longer there than I had done previously which really improved the enjoyment of the place because I actually looked at so much more. I do feel that the keeping methods and questionable as few of the animals seem to have enough space but assuming that side is OK, a very enjoyable day.

Aqualand was another excursion we did and thankfully not as busy as I thought it would be. The ground was even hotter this year than it had been previously and was impossible to walk upon so we just took to wearing sandals. Matt injured his neck in the diving pool. I felt sorry for him but, at the same time, it is useful for the kids to experience some pain now and then to understand the concept of what others may be feeling and show a little more understanding.

We went to a Crazy Golf course though cannot remember where and I doubt it matters anyway seeing as how it was rubbish. Worse yet, we were following 4 German guys that thought they were at St Andrews yet were the biggest cheats I have ever seen in my life and they were deadly serious about too.

Visited Faro 1 and 2 shopping centres and Matt had his first experience of successful haggling and I was ever so proud of him! Sadly, I have since found out that my effort achieved little more than me being conned out of an extra €40 than I needed to pay. Clearly my technique is lacking.

Lastly, we did a couple of visits to the large shopping Mall just between Playa Del Ingles and the airport. If nothing else, it had good air conditioning!

Some little extras …

• Faro 1 still has the giant turn marking where the loos are.
• Roja still make those loos
• Leg room is getting even less on planes and if I notice it must be bad.
• One of the guys at Merlin’s (the Italian one) seriously broke his leg roller skating and is off work just now but hopes to be back for September. He doesn’t look at all himself though, bless him.
• It was lovely to meet Ree and Jules out there a couple of times, they seemed like really good fun so it was annoying I felt too crap to really enjoy their company.
• I am starting to really dislike the Spanish. Not all of them of course, I have not met all of them! Our neighbours on both sides of the apartment seemed incapable of talking to each other in anything less then a bellow. They were worse than the Germans for reserving sun beds. They dominated the pool and just didn’t give a sod if they spoiled the enjoyment of others especially if those others were not Spanish. They smoked regardless of regulations to the contrary. At the airport I was told by a female security operative ( I know of a better and more accurate term) just after I said I didn’t understand what she had just asked me to do in Spanish, that I should learn the language or not bother coming to her country … I wish I had not had the kids with me as I would have liked to followed that up with a visit to her supervisor reminding him or her just who it was that kept them in work.
• Top marks to Pub Nestor for embracing the kids totally. I was dead worried that we would be forced into some horrid straight bar with a crap entertainment or no entertainment but they were brilliant. Not one customer made us feel uncomfortable either except for Matt who was getting a little miffed when it was assumed he was my boyfriend. At one point he asked if he could throw a queenie strop and publicly dump me just to make the point! Of course, if Matt was my boyfriend, what did that make the girls?
• By the last day I was very ill and bringing up blood but thankfully survived both the trip to the airport and the flight home.