Wow. Where do I start? I am flabberghasted. I thought we'd reached a level of utter flabberghastation (a real word in my world) that couldn't be topped, but that just shows me I shouldn't set the bar so low.
Yesterday was another appointment up in Edinburgh. A biggey. So after I eventually got him up, had the cooked breakfast refused, and got us out of the house, up we tottled to the hospital - which we arrived at early believe it or not ("told you so" was hubby's response - actually, it's his response for everything so I shouldn't have been so suprised).
We saw a couple of doctors, did a few tests, signed paper so that they can use his bloods for dna testing something or other, did more tests (of which I was flabberghasted - there's that word again, at how poorly he responded to it), only to go in and see the head man, the man at the top of the tree, the one who knows what's going on (although how I'm buggered if I know because he only sees hubby for 10 mins once a year, and didn't even know about hubby being removed from the house prior to Christmas, and why should hubby mention it because he doesn't need that information?... blah, blah, effing blah...) and do you know what his response was? Would you like to? Are you sitting comfortably?...
(This is the third time I've typed this because I've deleted it accidentally twice already - not helping with my mood lol)
This is the doctor talking, anything in brackets are my thoughts - and I'm trying to keep my thoughts printable, although I'll apologise now if I slip here and there...
Hubby is very young (no kidding Sherlock), and he doesn't tick any of our boxes (never heard that one before), and he's not declined at a rate that we would have expected him to (well he hasn't adhered to any of the dementia rules so far, so why should he start now?), and we can't believe how well he's responded to his medication (your problem being?...) so we think he should come off his medication (dumbstruck - say what?). That way we'll be able to see what happens (again, no kidding Sherlock) and be able to pinpoint which area of dementia he has, if that's what he has (Wtf? Are you kidding me?). The drug he is on is for Alzheimers (ok...) but he doesn't fit the rules for that (losing the will to live here) and the other doctor thinks it's FTD (which is what we were told, but where does Alzheimers come into it?!?) but because you're husband is non typical (again, state the bleeding obvious) we think the best thing to do is for him to come off all of his medication and we'll be able to see what happens as a result (you want what now?!?). Maybe it's a nervous breakdown that he suffered and he's just on the anti-social, forgetful, bad tempered side of the spectrum and that's his normal behaviour (I can't really type anything here because it's all expletives, but please feel free to insert your own). So we want hubby to come off his meds and we'll be able to see. I know he came off them once for a week, and he crashed and it all went a bit haywire (I remember) and he asked to go back on them, but we're not sure what to do with him, and this would be a way of seeing what happens (again, insert own expletives).
It beggars belief! At the beginning when they thought he had dementia we had to go through loads of tests to prove it wasn't a nervous breakdown because that was more age appropriate. We were told that he categorically had not had a nervous breakdown. We then went through all of the tests, and then some more for them to say he had dementia. We are three (nearer four) years into this, and he's not responding "normally" and they don't know what to do with him, so hey-ho, instead of keeping him on what works - lets upset the applecart and have a mini experiment and stand back and see what happens.
(I paused for a coffee - recompose my thoughts)
They were unaware of what happened prior to Christmas where hubby was removed from the house. We are almost at the point where the girl's social worker will be removed because the meds have got him level. I asked what would happen if they start messing about with his medication and the response was "it's nothing to do with them". Well I disagree. Hubby wasn't allowed in our home until his meds had levelled him out - this is going to keep social services in the loop (I imagine, because they were concerned about their well being with hubby's moods being all over the place). Have they even thought about this or is this just a little experiment for them where it doesn't matter because they're up in Edinburgh and we're not, and they won't see him for another 12 months and what does it matter?
On the drive home (still in utter disbelief) hubby asked my thoughts on the matter. Now this is staggering because he doesn't normally care about my thoughts on any matter. I asked him what his were. Now bare in mind that hubby has been arguing his illness from day one. He's wanted off his meds from day one, he has disagreed with everything and everyone since day one, and once we got home he wanted me to ring his local consultant. I told him that whilst I don't want him to be ill, I want him to be working, I want to work, I want to have a "normal" life, if he could hand on his heart and truthfully tell me that he thought that there's nothing wrong with him then I would stand by him and go with the flow. He couldn't. Where his age comes in handy for some things it goes against him in others. Let's experiment a bit and stand back and watch doesn't go down well with me, or him if he's honest.
I rang the consultant when we got home, and got straight through (unheard of - go figure) and I was told not to come off any mediation until she has seen him next week (Thank God) and that she will wait for the letter from Edinburgh so she can read it, and if she hasn't had it by the appointment, she'll discuss it with us.
I can't go back to how it was at the beginning, and he can't either. It's frightened him, it's frightened me. The fact he's arguing coming off the meds shows this. He's finally been told what he's wanted to hear (through "baffling them with bullshite") and it's taken years of telling them what they want to hear (Edinburgh, not the local doctors) and they've swallowed it hook, line and sinker. I am briefed as to what I can say, what I'm allowed to mention, and they've taken his word on everything in a ten minute discussion. Seriously - is this not like day one of dementia school? Patient's will say what they want you to know?
They didn't know about him being abusive prior to Christmas, they asked if he was getting himself into debt by spending money. The answer was no, but that doesn't mean he's not spending money like it's tap water - it means that I'm having to cut costs and do without so that we don't get into debt. They ask if he's making any irrational decisions. The answer is no, because whilst he's making irrational decisions (like moving to the Islands on the outer Hebrides) I'm the one that's putting her foot down in the background so it doesn't happen. I'm the one having to make the space for a motorbike he's decided to buy and come home with, I'm the one refusing to put the house on the market so he can buy a pub, the one who's saying she won't move back onto a farm so that we can rent the house out so he can go back to work (it would kill him). Are these rational? No. I am the bad guy, and I keep things as settled as they can be.
I am the one who is trying to keep things calm in the house so that he doesn't get frustrated. "Do you lose things?" No. (Why would that be? Because he doesn't put anything away and if he needs something he askes me to get it for him - seeing a pattern here?...) "Can you cook a meal?" Yes. Does he? No, because I do it all because it would stress him out and cause frustration and a paddy. "Can you plan a route out when you're driving?" Yes. He was an HGV driver for God's sake, but that doesn't mean that the drive doesn't stress him out - there are other people on the road who don't always do what he wants them to (how dare they).
Ah well. What do I know? Absolutely nothing if Edinburgh is anyting to go by... I cordially invite, any of his doctor's (well just this puffed up little one, who at the age of 12 thinks he knows everything about anything) to come and live with us for a week - that might be too long for him, a couple of days might do it, and see what it's like at the dinner table where his food can dribble down his chin and we aren't allowed to talk because the noise is too loud, or catch him prior to his meds (or indeed after his meds) and see him try to take off the kitchen cupboard because he can't get a bracket to fit on the wall properly, or see his response if his favourite socks are in the wash and there aren't any others for him to wear (ignore the 20 other pairs in the sock drawer), or witness the gumtree addiction which means he brings budgies into the house knowing I'm allergic and then having to rehome them because the chirrping is too loud, or him deciding there and then that we need a new dog and twenty minutes later we have a puppy in the house. Or even see the wallpaper that's been stripped for months and left because the thought of putting it up is too much, or the drive that needs finished and don't get me started on the shed project. Or the "I'm not eating sausages for tea - they're a breakfast" but he'll sit and eat 12 if you let him, or the inappropriate comments that come out whenever he likes leaving you wanting the ground to open up and swallow you. Oh well. 10 minutes a year sounds like long enough to be "baffled with bullshite" and believe it, allowing you to come up with conclusions like the one he made - many, many years at med school well spent. Like I say. I cordially invite him - I lay the gauntlet down.
Rant over. I think...