I got asked something on Twitter. How do the girl's manage with their daddy's dementia, and did I have any tips.

Well. I don't know if these are tips or not, because what works one day isn't tied to work the next, but I've been as honest as I can be with the girls. They know daddy is poorly. The way I described it is that he will be or get more forgetful, he might get confused, he might say words wrong and he might get cross and shout at them, but when this happens it isn't "daddy", it's his illness. I think that the honest approach has helped, and whilst they have the gyst of it, it's been simplified  for their age and not wanting to frighten them. My biggest tip with children is to be honest, to tell them, that way when things are going belly up they know there is a reason for it (the illness) and that it isn't them.

They interact with their dad differently. They let him instigate, although it's them and allow him to think things are his ideas. If he's doing jobs they will go and help him (one's washing the car with him now). This isn't because she wants to wash the car, it's because she wants to be spending time with him (clever eh?). He controls the tv remote, so they've learnt to be interested in what he's interested in. That way they have something to say to him that they know he's interested in - if he's not you can be talking to a brick wall and get no response.

They've learnt to be super tidy - that way they can't get wrong for leaving things about, and if they've put it away they won't get a tirade of abuse thrown at them (this also helps me because his OCD is my doing the housework lol).

They know when he's in an aggitated mood to play outside or in their bedroom. They've learnt not to point out a word if he's said the wrong one because that leads to him getting aggitated. They do as they're told when they're told because that keeps the house peaceful.

Most of all, if they're scared, or upset or have any question they know that they can come to me and they will get an answer - albeit maybe a diluted answer, but they will get an answer and that can be all that's needed to reassure them.

The other important thing that works in our house is that if daddy doesn't want to interact with them, not to force it. Forcing it just sets you up for a fall, he gets upset and cross, the girls get upset, the shouting can start, the mean words that he doesn't know he's saying or mean will start, and simply leaving it and letting him look out of the window leads for a happier household.

What works in one person's house isn't tied to work in another, each person with dementia is different, and each day with dementia is different, but keeping things as simple as possible seems to work for us - at the moment. xx

We've been warned to avoid sweet foods because they don't think we can cope with Dementia and Diabetes (where did they get that thought from?...) but seriously, I can't fill him at the moment. He won't do "faddy foods" (such as rice or pasta), and it has to be meat, potatoes and two veg, but seriously, the portion sizes are getting rediculous. If I do smaller portions he'll have seconds and then some, if I do bigger portions he still askes for more. The other night I got up from the table to get the salt and pepper (I forgot...), turned around from the cupboard and my tea was missing. He was eating it. "I thought you didn't want it"... Tonight I braced the faddy Macaroni Cheese. He wolfed it down, and seconds, smothered with Peri Peri Hot sauce because he's complaining of foods having no taste, has pudding and then is still mooching about because he's hungry. The problem is, he gets grumpy and argumentative if hungry, but then his weight is creeping on which would incur other issues tht we could well do without.

I've also noticed him tapping away again - oh dear God, I was so relieved when phase passed, or seemed to. The jiggling of the knee can drive me around the twist, but it was also his shoulder today. I don't know if it's the wind down from his hospital appt on Monday or if it's creeping back, but I was happy when these spasms went. Back to being catapulted out of the bed at 3am... Which to be honest, is no mean feat as I'm not the slightest of wives.

He's also gone from sending texts by himself to getting me to spell out words and check them before he sends them. It just seems a lot of little things all in a short space of time. Oh the rollercoaster that is Dementia - it never ends does it?

Hubby has been given a new camera when his friend upgraded his. It's all singing, all dancing and would probably make a cup of tea if you asked it nicely enough. Hubby gets fixated on things from time to time, and the camera and taking pictures seems to be the new thing - which I can cope with. The list of other fixations have had me close to the brink lol.

Trying to rush out of the house last night to do the girlies drop offs and pick ups he turns around to me and says "When you get home tonight we could fiddle about with the camera and do some of those glamour shots". My response was utter silence and a raised eyebrow. The look of shock and confusion on my face must have been a bit of a giveaway because he simply said "that wasn't the right word was it?". "No sweetheart, that wasn't the right word" lol.

Not in our house anyway. There was hubby and I having a bit of a serious, grown up conversation about yesterday, Dementia, Frontal Lobe Dementia and the fact he doesn't want his ashes thrown out of an HGV at regular intervals (you had to be there... lol).

Hubby and I rarely have conversations like this, or proper conversations come to that, and it was lovely just chatting away the two of us. Now then. This is where it goes a bit t**s up... What I haven't mentioned is that I'd gotten out of the shower, and for decency was just wearing a nightie (note to self, purchase a button from the neck to the ankle nightie), whilst the both of us were lying on the bed chatting away. He had his arm over me and we were enjoying the sunshine gleaming through the bedroom window, the dog at the bottom of the bed doing the same. Nothing naughty was going on, although I can't say he wasn't trying. "This is what I mean about inappropriate behaviour, the girls are home." etc, etc. That's when mortification occured. Littley came up the stairs to ask if she could go to a friend's house for tea. Nothing wrong there I hear you say... What I didn't realise was that said friend was stood beside her, my bedroom door wide open, with the view of me, hubby and the' dog lying on the bed with me flailing around like an obese turtle stuck on it's back trying to get up with as much dignity that I could muster (there was no dignity), whilst hubby turns onto his tummy with his head in the pillows laughing his head off, the whole bed shaking from his laughter.

Oh dear God. The girls went to have their tea and he's pi**ing himself laughing at the thought of what her mum's reaction will be to this completely innocent chat we were having on the bed. I'm still mortified. Seriously,why bother trying to appear "normal" when you can give Dementia a good run for it's money on your own... 

As you know yesterday was a big appt. It lasted four hours. We've spent two years simply knowing that he had dementia with them thinking he's had it two years prior to that, nobody has had the balls to try and say which type they think it is.

On my little half hour of speaking to the doctor she told me based upon the memory test results, the scan results, other dr's opinions, and her opinion from having see him yesterday that she thinks that he has Frontal Lobe Dementia. Wow - Bang. There we are. I've never looked at any type of Dementia, I didn't have a name for it, I didn't want to be looking for things that weren't coming, or seeing things that might not be there because I've read up on it. I still haven't.

I was asked about panic boxes. I said we already had one. She asked why. It's wired upto the smoke alarms because there was a spell that he would leave the cooker on - he's stopped using the cooker so that doesn't happen now, although he was never a regular user of it in the first place "why have a dog and bark yourself" lol. She was glad we had one. I asked why, silly me... "there is the likelyhood that he will become violent and it's good to know that you have a button where someone will be there to help you instantly". Great. That's good to know...

She told me that Frontal Lobe Dementia is a slow burning illness. "Don't worry, it won't last decades, it has a 2 - 8 year lifespan but it's usually around 7 years". Great. That's good to know... I'm going to get battered but don't stress, he'll pop his clogs before long...

He tried to persuade her to sign him fit for work. "if in a year's time you're still at this stage I will reconsider my diagnosis - but you won't be". Wow - nothing like sugar coating the pill.

At home last night we were talking about the day's events, and we did have a giggle about it. He asked what "innapropriate behaviour" and "sexual inhibitions" meant. I explained this to him. He burst out laughing, a proper good laugh with a sparkle in his eyes. I asked him what he was laughing about and he said "imagine your mother's face if she came in the living room and I'm sat with my willy out" lol. Good to know he still has his sense of humour. I asked him "who's got the better end of the deal here, me or you?" "What do you mean?" he asked. "At least when you're doing these things you'll be oblivious to it, I'm the one that's going to have to apologise lol". Another proper laugh.The thought of me having to say sorry for whatever had him in stitches. Ups and downs, it's like a rollercoaster you just can't get off. 

Today was the big appt. With someone we should have seen 18 months ago, but heyho that's by the by.

It isn't that I haven't got anything to say today. It's a case of milling over what has been said. More thoughts rattling through my already full head. I feel like I've had a kick to the teeth, but once I've gathered my thoughts I will write them down tomorrow. x

We have a big test tomorrow. Cogniative tests. I always dread a dr's appt because usually the mood changes in him and he becomes argumentative or obstreperous.

I thought today had gone well. Smiles, happy with me and the girlies. Then the wind down to bed time. I've spent the last hour listening to how useless I am. How lazy I am. How I'm happy to be on benefits because it means I don't have to go to work.

I'd love to go to work, get out of the house, see people and actually work. The house feels like a prison where I can only go out if I have persmission, and I don't mean "go out" go out, I mean out at all.

I'm not lazy. I'm not happy to be on benefits. I want to work, but this sodding illness means I can't. Money is tight, excrutiatingly, and I'd love to bring some in so I'm not always saying "no" to things, and not extravagant things, things that I should be able to say "yes" to. I'm sick of stressing about bills. Of robbing Peter to pay Paul. Yet it's always my fault. It's always me that stops this by not working. I don't not work because I'm happy not to. I like my brain to be ticking over, I like to be challenged mentally, I'm certainly challenged in all other areas of our home life, but this doesn't matter because he's getting wound up about tomorrow.

He'll put on a "nothing's wrong with me" face for two hours tomorrow and then there will be the come down, the unwind, the not having to pretend time and boy, I look forward to those as much as I do the upwind (can't think of a better word) for these sodding appointments.

Apparently, all he says about me to others is good. Why does that have to change when it's just us. I do absolutely everything, I keep so many plates spinning and all I get is resentment for it. This illness is an absolute b*****d. You start believing the things that are said to you over and over again, and that's when you feel the wall coming. I'm trying, I fail, I succeed, but I'm trying.

Just a little peak at what littley did yesterday - and she did good. In the running for jnr Domestic Goddess :o)

I sometimes wonder if I'm going doolally. I mean seriously. Even hubby has commented on things I do "If I did that they'd have me locked up..."

I couldn't find my phone last night. "Did you think to ring it?" I hear you cry. No I did not. Finally found it an hour after search began and where was it? In my bra where I always keep it. D'huh.

I remember being so tired once I went to put the kettle in the fridge. In my defence, I had the bottle of milk in my other hand, they're both white, but even so. D'huh. I've even tried to put the kettle in the washing machine - but again, in my defence, the washing was the next job on the list, and I'm constantly trying to be a step ahead of myself, so that's my excuse there...

I even find that hubby changing his mind, forgetting he's said things, thinking he's said things can make me think that way. The most valuable thing in our house, after hubby, girlies and dog, is the calendar. If it doesn't get put on the calendar it simply doesn't happen. I remember a time when we didn't have such a thing. I also remember a time when a clock wasn't important. It wasn't all that long ago that these things didn't matter. Now I feel like a hostage to the ticking of the clock. Either I never have enough time or I'm waiting on it tick, tick, ticking until it's the time I want it to be - like bed time lol. 

I put my little "mistakes" down to being constantly knackered, constantly trying to keep things on an even keel, and constantly having lots of things rattling around my head for my little moments of madness. It must be awful for hubby who does these things because he doesn't realise he is, he has no control over doing them and also denies having done them in the first place - "it must have been you, I wouldn't be so stupid to do something like that", which then makes me second guess myself and adds to the things already rattling around in my head - which is just what I need lol.

Great fun was had making the pizzas last night.

Next time we'll make little individual ones. Hindsight is a wonderful thing - lifting dough with the topping on... that wasn't stressful at all... LOL