Tonight I actually snapped

[Dave K]

It is progress though it may not feel that way, Dave.

Your step daughter and you now know there's a plan in place to find out exactly what your wife's medical problems are ... and then whether any aspect of them can be treated through medication. It's clear the psychiatrist is fairly sure there is a problem.

You and your step daughter co-operated effectively, each of you providing support for the other and for your wife.

It's a great shame the NHS can't act faster than it does nowadays (not having a go at the NHS here - more at the politicians who mess it about and starve it of funds) ... however they may act faster than they promise to do.

The psychiatrist will have reached some provisional judgements about your wife's mental state and how it affects her functioning. How about emailing the psychiatrist to ask his / her advice and for helpful information sheets on the best ways for you to help your wife deal with specific life problems?

TP can only give generic advice and most of us aren't medically qualified. The psychiatrist may be able to give advice tailored better to your wife as an individual patient.

Nothing against the psychiatrist, he was thorough but his hands are tied as I can understand

Maybe if I were not around then things would move much quicker for my wife...

 

[Dave K]

So no problem then

 

[Wolfsgirl]

Oh how disappointing for you but I think you are right, to give Mrs Dave the correct treatment, she must have the right diagnosis first. I wish I could suggest something but I do agree with others, now is time for you to put your foot down officially (not just family) to get help to keep you strong to bear all this...Maybe speak to gp to see if something like Aricept would be given just in case as a preventative of deterioration just in case, as long as it would not be harmful?

Did Mrs Dave display any strange behaviour today in front of daughter 2?

So sorry for you but keep your chin up mate x

 

[SoyHJ]

So sorry to hear the visit didn't come up with anything conclusive but they do want to cross all the I-s and cross the Ts. It seems that he clearly does think there is a problem and you are now going to have someone to come and talk to YOU about what you face and how you are coping which is all to the good. The pic of the sweet stuff shows only a minute part of it. You've got yourself on the radar, a CPN or whoever will have you on the books now and progress has been made both on that side and with your stepdaughter. I know it doesn't seem like it now but it's one **** of a lot further on than you were just a few months ago. Don't give up now. x

 

[Dave K]

So sorry to hear the visit didn't come up with anything conclusive but they do want to cross all the I-s and cross the Ts. It seems that he clearly does think there is a problem and you are now going to have someone to come and talk to YOU about what you face and how you are coping which is all to the good. The pic of the sweet stuff shows only a minute part of it. You've got yourself on the radar, a CPN or whoever will have you on the books now and progress has been made both on that side and with your stepdaughter. I know it doesn't seem like it now but it's one **** of a lot further on than you were just a few months ago. Don't give up now. x

To be honest all I can think about now is giving up

I have had enough. Really I have had enough...

 

[Wolfsgirl]

We know you have had enough as many do here, and we feel so sorry for you. Please try and keep things in perspective. If Mrs Dave had been diagnosed today, how different would your lives have actually been tomorrow? Honestly would there have been an immediate dramatic change for the better? I don't think so...

I know this is probably not what you want to hear and I hope you are not in complete despair.

xxx to you and Mrs Dave...

To be honest all I can think about now is giving up

I have had enough. Really I have had enough...

 

[Pottypeg]

It might be inconclusive, but that does mean they realise that there is something wrong, it is not a nothing's wrong result. We will not let you give up now, you have made the first move, all the advice on here, while not professional is experience talking and that is the best kind, accept whatever help is offered, your wife might say no, but as many of us have found out, it may not be a definite no.

Anne

 

[Wolfsgirl]

You have made an excellent point Ann!

It might be inconclusive, but that does mean they realise that there is something wrong, it is not a nothing's wrong result. We will not let you give up now, you have made the first move, all the advice on here, while not professional is experience talking and that is the best kind, accept whatever help is offered, your wife might say no, but as many of us have found out, it may not be a definite no.

Anne

 

[garnuft]

A diagnosis isn't everything, although I know it helps you to understand.

My son who has severe learning difficulties and mobility problems, went to a special needs school from the age of three, saw educational psychologists, neurologists, all-sorts-of ologists all of his life... wasn't diagnosed with autism until Xmas Eve last year. (he's 27 this year).

For me the epiphany was when the word autism was brought into the mix, 2 years ago.

So that when he had is diagnosis it was no surprise or relief, the relief was the first mention of autism, it made everything fall into place, everything that hadn't made sense and caused me enormous frustration, fell in to place when I knew.

So I would take what you know and work with it.

You can assume, because of the scan, there is no organic reason for your wife's cognitive changes...brain tumour etc. that is a relief, small comfort but still a relief.

So I would work with the assumption that it's dementia.

It doesn't stop you accessing help and support, or applying for a reduction in council tax, Attendance Allowance etc.

You must think about it all as calmly as you can, thrashing about railing against life will just leave you exhausted and in the same situation.

You're in this situation.

Now you must think how can I make things better for everyone concerned without losing the plot all the time?

I would try to get a handle on things, get some control back and I don't mean taking photo's as evidence of how hard your life is,

I mean get yourself into gear and organise the financial side, carers to keep your wife company, look into respite care...learn about the beast you are dealing with, then you'll be able to fight for your wife and your life together.

Knowledge is power.

I know it's hard when you feel you're on your knees but stand up and fight, not your wife but the illness that has captured her.

Best wishes.

 

[Lindy50]

Wow Gwen, well said !!

It isn't easy Dave, we all know that, but we are here to support you and so are your local services. Get over the disappointment and then, as Gwen says, get organised!

Rooting for you all the way

Lindy xx

 

[Wolfsgirl]

Gwen I would so want you in my corner x

A diagnosis isn't everything, although I know it helps you to understand.

My son who has severe learning difficulties and mobility problems, went to a special needs school from the age of three, saw educational psychologists, neurologists, all-sorts-of ologists all of his life... wasn't diagnosed with autism until Xmas Eve last year. (he's 27 this year).

For me the epiphany was when the word autism was brought into the mix, 2 years ago.

So that when he had is diagnosis it was no surprise or relief, the relief was the first mention of autism, it made everything fall into place, everything that hadn't made sense and caused me enormous frustration, fell in to place when I knew.

So I would take what you know and work with it.

You can assume, because of the scan, there is no organic reason for your wife's cognitive changes...brain tumour etc. that is a relief, small comfort but still a relief.

So I would work with the assumption that it's dementia.

It doesn't stop you accessing help and support, or applying for a reduction in council tax, Attendance Allowance etc.

You must think about it all as calmly as you can, thrashing about railing against life will just leave you exhausted and in the same situation.

You're in this situation.

Now you must think how can I make things better for everyone concerned without losing the plot all the time?

I would try to get a handle on things, get some control back and I don't mean taking photo's as evidence of how hard your life is,

I mean get yourself into gear and organise the financial side, carers to keep your wife company, look into respite care...learn about the beast you are dealing with, then you'll be able to fight for your wife and your life together.

Knowledge is power.

I know it's hard when you feel you're on your knees but stand up and fight, not your wife but the illness that has captured her.

Best wishes.

 

[bemused1]

Well said garnuft. And you have experienced more problems than most of us.
Sadly Dave if you want help you have to go out and get it, you have actually been luckier than a lot of us who have to beg for a carers assessment. Mine took the form of a telephone assessment and I got 'forgotten'in the system so it took months in fact to actually get it. Take the offer and work with it

 

[jaymor]

Gwen,

With you in charge this country would not be in the state it is.

You think, you act, no pussy footing around, you say it straight. Your Mother bought you up well, a very sound head on a very understanding body. You keep your sense if humour, your love shines through.

Any battle, like Wolfsgirl , I would so want you in my corner.

Jay

 

[SoyHJ]

To be honest all I can think about now is giving up

I have had enough. Really I have had enough...

You feel like this right now and very probably will many times more, Dave. When we've had what feel is a knock-back we sometimes feel 'what's the point?....'. There's every point in trying to pick yourself up again. You can and will do it for both you and for Mrs Dave. Right now you are at the tail end of days and weeks and months of emotional stress coupled with the build up to today so you feel deflated, emotionally drained and as if you can't carry on.

See my previous post on here. You've made huge steps recently which you'd never have seen yourself making a short time ago. Clear scans often simply show that, as someone else said, there is nothing like a brain tumour or obvious signs of vascular problems present. You haven't been told there is no problem and although you really needed to have a name for it, at the moment the important thing is that it has been recognised that there is an, as yet, undefined, problem. Yes, a name makes it easier for some of us so we can tell ourselves that we are trying to deal with x or y. This is what I wanted too for me and my OH. His first scan results were clear but was referred to a neuropsych the same as your wife has been because, despite the scan, it was clear there must be some kind of problem. Today has been draining and shattering for you. I repeat, you WILL get there - with hopefully the support of a CPN as well to help you. Good on you for agreeing to her coming. Ok, lecture over now. x

 

[Dave K]

Hi Guys

Thank you for you comments but I think I need to disappear for a while whilst I take stock of my situation

 

[Scarlett123]

Garnuft - there is a General Election next year, and I think you should apply to be the Prime Minister! It doesn't matter what party you represent, you shoot straight from the hip, and are the Annie Oakley of this forum. A wonderful post, and so, so true.

 

[Raggedrobin]

Dave, hope you get a nice walk in this evening with lovely Zeus and if I was you I'd make some headway on the jammy dodgers tonight and to hell with the consequences. Its been a very stressful day for you but tomorrow is a new day. i a, not even going to suggest the nighty night nag club turns up tonight, just try, oh try to be kind to yourself. Xx

 

[Sue J]

Hi Dave

Well that must seem like quite an anti-climax for you? Because we all want someone to say, yes we know what it is and this is what we are going to do to fix it and that's not what's happened.

However, this is a big step, that you don't realise now, as others have said, they know something is wrong and need to investigate further. My scan and MRI were negative and yet I know there is something very physically wrong, just the meds dont know what nor how to deal with it. I've been trying, and still am Dave, for 5 years now for a diagnosis and prior to being ill was working and caring, have worked all my life. You have come quite a long way in a short time by comparison believe me. I have been trying to get them to do neuropsychological tests on me then they would be able to realise something is wrong but I don't appear that way - my poor postman still knocks on my door petrifed that I am going to bite his head off which I once did in the middle of a psychotic attack - I think I should ask him to take me to the Docs because he could see very much something was wrong I was crying and pointing at my brain at the time because I was in immense pain, he could see there was soemthing wrong but I'm only ever able to get to the GP when I am feeling 'better' - sorry I'm waffling on about me but am trying to say that is a long haul battle and you are on the way to things changing. My situation has but not thanks to the services but to the support and information through this forum. The services unfortunatley, don't yet come to the mentally ill but still expect the mentally ill to go to them. Thankfully your wife has you to fight for her, and I know you will even though right now you've had enough. The Memory nurse has a job to do, and it's good you're getting her on board.

Notice in your photo your wife has got sore throat sweets, is that something that bothers her? is she able to say she has a sore throat or does she just buy the sweets? She might find a bit of iced water soothing and how about a lager lolly for you.

Chin up chuck, tomorrow's another day
Best
Sue

 

[Dave K]

Good morning

My apologies for walking off last night...

After all that happened yesterday I could feel myself getting angry with myself, health service and the world in general so before I said something I would regret I had to walk away so I turned off my PC, got Zeus and went for a 3 hour walk

I returned at 11:30pm switched on the PC and started finding and reading everything related to neurological examinations to where I have Just finished reading. Just spent the best part of 5 hours researching.

I have learnt so much, taken loads of notes and stored so much away regarding neurological testing, although none the wiser for my dear wife I do feel that if she asks me, and I am sure she will, I will have most of the answers there and then rather having to look it up.

I realise, have been told (Sue) and read that although my wife has passed the first brain scan and the SPECT scan that this is no way the end of the road or finding the cause of my wife's condition, it is but just 2 steps completed rather than 2 steps failed...

OK, so, we have ruled out 2 scans so now I need to forget those and move on to whatever comes next which will be the neurological examination(s).

Step-daughter has stepped up to the mark for me on this one as she has said that she would take her Mum to these tests as they can be quite long (2 or 3 hours) per test. The Dr. has said that, although up to the hospital how many she will need but he has said at least 2 but this is up to the Hospital.

I am feeling much better with myself now even with no sleep last night / this morning, so I am going to get a couple of hours right now before I have to 'Open Shop' for the day

Did I say that next week I will be having a carers assessment from the memory team, not too sure what they can do for me in our situation but I will give it a go

Anyway, going to get a couple hours of shut eve right now, wished I never drank so much Coffee though (10 mugs at least)...

 

[Wolfsgirl]

Good morning, glad to read you are feeling a bit more positive now.

Whatever the memory team offer you, please accept without saying Mrs Dave won't do this that or the other. Let them cope with any fall out from Mrs Dave. If there are difficulties from your wife regarding any changes, you will then have other witnesses to her behaviour which may well help you both and it will be her refusals rather than yours and you will come across as positive willing to try.

It is so good that daughter 2 is on side and offering help. You also have your little mini break to look forward to.

Did you read Malomm's thread? He also sounds quite disappointed and yet his wife is receiving medication!

Have a good day x