Hmmmm. Where to start? There's so much going on at the moment and there's no rhyme nor reason to most of it.

I must admit to finding the past week or so a tad knackering. I could sleep at the drop of a hat (if I was allowed lol), but it's not a physical tiredness, it's a mental one and I can't really explain why. He's in a cantankerous fettle at the moment. I can't do right for doing wrong. I'm trying to sort out issues for biggey and littlie, middley is having her moments, the car is hardly here, I'm trying to sort out the garden and whilst you would think that if nobody was in the house there would be less housework to do you would think wrong.

Littlie's hair is still falling out, bless her. We have an appointment with the doctor tomorrow so I might know a little bit more then. Y'know, I think it would be easier to deal with just her hair falling out (which is devastating enough) but then I thought about her eyebrows and eyelashes and I'm choosing not to go down the stress of worrying about what might not happen route, because I just think that might tip me over the edge at the moment.

Biggey is having an issue with a child at school, but I've been on the phone to them and had the "very polite but taking no crap mummy" hat on. That seemed to work. It worked for littlie the other day and blow me, I wouldn't want to be the little girl that has been giving littlie grief. "You are under no circumstances to knock on littlie's door. She does not want to play with you because you are being so mean to her and her mummy is very upset (annoyed would have been more accurate but I'm not going to deduct points for it) with you". I did notice said little girl sticking close to her mother yesterday during sports day - wise move little girl.

Yesterday was sports day. I had the shopping to do. I had nothing, and this is no exageration, in the house to eat. All that was in the cupboards was things that you add to food, but nothing you could do anything with. I knew time was going to be tight, so I was ready as soon as the girls left the house for school. Hubby decided he was going to come - which I thought was nice. He decided this when he was still in bed at 9.15am. Patiently I told him that if he was planning on coming he would need to get up before we could go out. Still being patient (although it was starting to wear thin) I heard the shower go on. It was 10.15am. Count to 10. At 10.45 we managed to leave. My stress levels were orbiting, but there's no point saying anything because "Why are you stressed? There's plenty of time" would be the response. A twenty five minute drive there and back makes 50 minutes (obviously - sorry x) which means I have precious little time to get around the supermarket without factoring in the time it takes to put it away, make lunch, and leave the house to get to the school to watch the sports day, because if I don't go all hell will break loose with middley because I had said I would be there. Now add to the mix that hubby decided he wanted to go to a different shop before going to the supermarket. OMG. I was losing the will to live. Time means nothing to him. My stress level was through the roof. I threw the shopping away, made lunch. Told him I'd wash the lunch dishes when I got back and made it with one minute to spare.

It continues...

Last night we were flicking through the tv channels. Occasionally he points out things that I might like to see. It's interesting the things he points out. The other night it was Pretty Woman. He put it on for me. Last night it was Coyote Ugly. He put it on for me. I like those films, but so does he. They're films we watched together when we were at the beginning of the "Hubby and Constantly Trying show". We have seen them many, many times to the point where we know the words before they say them. Last night he said he'd never seen the whole film - he has, almost as many times as me. We even watched the film at the cinema on a date night (what are they?) when it first came out. He can't remember this. "You're making that up". I left it, but it suprised me. Hubby forgets things from the now, but this was a forget from the back then. This is new. We are having conversations over and over and over and over (that's over and over) again. Either that or he's ignoring me, sorry - that should read "not listening", but before now there has never been a forget of a memory that was years and years ago. 

On a funny note - and I am not ashamed to say that I found it funny. Before leaving to go shopping hubby decided to shave his hair (I know, I'd about given up at this point). He'd been given a set of clippers because his were about packed in. They were working intermittently so another set was needed. I was in the living room when he commented that he didn't think the second pair were working properly. I said to him that I thought he should leave it for now and that we would get him a new pair if we ever managed to leave the house and get to the shops. All was fine. Then I heard "I'm in a predicament... I'm in a predicament... I'm in a predicament..." and heard him pacing the passage at the bottom of the stairs. I went through to see what the matter was. He hadn't left the clippers, but started to clip his hair. The predicament was that the clippers had stopped working. With only one side of his hair cut. Dear God, if you'd seen it. Panicking (me, but not letting on) incase the original clippers wouldn't last long enough to cut the remainder of his hair and he'd have a hair cut like a set of steps until I'd replaced them was starting to flit through my mind - glass half empty?... I'm relieved to say that we managed to eek the original pair into life long enough to get his hair cut, but the sigh of relief was audible lol. You'll never guess what he found when we were in the supermarket... A set of hairclippers. £80 down to £30 - result :o)

Oooh - before I forget. Hubby has decided he's got the car tomorrow. What about littlie's doctor appointment I asked. "Walk" was the response. Now I have to fit in a forty minute walk there and a forty minute walk back into an already running about like a headless chicken kind of day... Huge sigh, and rant over xx

Hello. I didn't write anything yesterday, and it feels like eons ago - although you might have enjoyed the break from the daily drudgery that is Constantly Trying's life (shame on you... lol).

I know I have a car. I pay the insurance for it. The name on the registration document is mine. I have a set of keys for it... it's just I never see it. Occasionally it's parked outside our house, but I'm getting a lot more sunshine in the living room at the moment due to it never being there. I see hubby fleetingly, although at the moment it's a bit of a blessing because when he does see me the comments coming from his mouth are usually unsavoury. My favourite comment today was "don't walk too close to me. It's not as if you have the looks that warrants standing close to me"... nice... I don't think so.

At the end of last week the girls revolted. They told daddy that he always has the car. That he never does anything with them, and I'm never allowed out of the house so they were "booking" the car for today so that we could go to the beach. Come Hell or high water we were going to the seaside. It wouldn't have mattered if we were wearing wellies and kagools (love that word even if I'm not sure I've spelt it right...) we were going, and we did. The sunshine was glorious, the sky was blue, the water was frothing and there was hardly anyone else there. You could see Bamburgh Castle and Holy Island on the horizon and the warm sand covered our feet before the lovely warm water washed it off.

Daddy had a couple of moments of tantrum - like not wanting to be there, the tide being in so he couldn't let the dog off the lead, he wanted to be somewhere else etc, etc. but the girls and I had a fabulous half hour before he decided we'd been there long enough. It's difficult for the girls, I really do feel for them. They weren't allowed to get wet. They weren't allowed to shout. They weren't allowed blah, blah, blah. I love taking them to the seaside. I take a towel and they can get as wet as they like. I remember last year standing on the edge of the water and a huge wave (or Sea Horse as we call them) came in and I went down. Everything I had on was soaked and my jumper was down by my knees but it was funny and they laughed and I had a wet behind all the way home, but that's what happens when you're at the seaside. He doesn't like them getting wet. It'll make the car seats wet. It'll make the car smell. The sand will have to be vacuumed off them before they're allowed in the car. Things like that. Taking them to the seaside with hubby is like taking a child to see Santa's Grotto only to not let them see Santa. They even asked me (in hushed voices) if they could have a "mummy day" and we could come back together so that they could get wet. Why is this illness so bloody horrible? For half an hour it was bliss, and then we went back into daddy land. Where he gets what he wants, when he wants.

Ask me where the car is now. He's away to his friend's house. Again. Whilst we're together I struggle with trying to keep the waters calm. I wish for a little peace from the demands (and he is demanding - clean the bathroom with a toothbrush etc) and I resent how I feel like a hollow replica of the person I used to be, yet when he's not here, I miss him, and wonder what he's doing and if he's alright and then I feel lost as if I'm a rudderless boat because he's not here to tell me what to do, when to do it and how.

Not to mention littlie's hair is still falling out. Dear God. How much is going to fall out before it stops? It's like Dementia is sticking it's fingers up at me and saying "you don't have enough to worry about... here's a little bit more for you". They say that God only gives you what you can handle. Fair does, but a little holiday from what I can handle would really be appreciated. You get a holiday from work every now and again - shame illnesses doesn't work the same way.

Last night I was too upset to write. Things were just too much for me to sit at the laptop and tippy tappy away trying to get things off my chest. I tend to, when I'm in that mood, sleep on it. Try to sort things out in my head, but this morning I'm in the same boat as I was when I went to bed.

Littley is a bright, sparky, bonnie lass who can sing and dance and is a star at pe and games and is a poplular little girl. Tall, very slim, blond and amazing blue eyes (all three of my girlies have amazing blue eyes). She puts on a happy smiley face and just makes on that "all's well" with her.

Yesterday morning there was a clump of hair. She showed me this, and I just thought it was a tat from brushing her hair. Last night, the way her hair way laying it was obvious to see it hadn't been a tat. There was a bald bit. Devastation. I sat her down and had a chat with her. She's worrying - of course she is, but she's not telling me that she's worrying worrying. She's worried about daddy (damn that male nurse that told our children that daddy would be going into an old people's home because of him being poorly), she's upset that biggey and middley can take their frustrations out on her and she's having problems at school with a little girl who's calling her fat. Seriously, there is not a pick of fat on this girl. She would blow over in a gust of wind. I am fat, she is not. This little girl is pushing her, kicking her, calling her names, being sneaky and devious and making her life hell. She'd mentioned that she was being mean to her, and I thought that we had dealt with it - don't play with her, ignore her, she's just jealous, that kind of thing. It hasn't sorted it though, and she hasn't let on because she thinks I have enough to deal with. Poor little might. Crap mum.

I had honestly thought that this morning there would be no hair on her pillow. I was wrong. Another clump laying there when she got up. She's now worried that all of her hair is going to fall out. More worry. She's nine years old for God's sake. Her plate isn't big enough to deal with anymore. "What happens if it all falls out mummy?" she asked. "Sweetheart, I don't think that will happen, but even if it did - if anyone could rock that look it would be you". How do you put a positive slant on something so awful. I would be devastated if it was me, so how can she not be?

I'm waiting on a phonecall from the school because whilst I can try, and I say try to keep things on an even kilter at home, school should be somewhere where she can go and be "normal" without worrying about daddy getting cross or doing something wrong. She should be going and enjoying it, not worrying about one little girl who is going to make her life miserable - she has enough of that at home. I've also made an appointment at the doctor's. We can't be seen until next Wednesday but she has sports day on Monday and a school trip on Tuesday so Wednesday it is.

Why do children have to be so cruel? I know they're children. I know that they don't know what's going on behind closed doors. I know that they don't realise what they're saying and doing can cause such upset and have knock on effects, but seriously. I've brought my children up to not be cruel. I've brought them up with "don't judge a book by it's cover", just because someone is smiling doesn't mean they're happy. That words can be cruel. A crumpled piece of paper when flattened out still shows the lines of the crumpling.

The sun's been out and I've been pottering in the garden, weeding and pulling stones about in the rockery, with supervision of course... It's been a relatively peaceful afternoon, he enjoyed tea - or didn't say he didn't and I've sat thinking "yay, it's not been a bad day today - it must be the sunshine agreeing with him".

I've just looked over at the laptop he's tippy tapping away on and what's he looking at? Houses. Where are these houses? The Orkney Isles. He wants to sell up and move lock stock and barrel. It'll only take six hours in a car, a short ferry trip and maybe a plane - depending on which Island he decides upon. I had seriously thought he'd forgotten all about this. He was like a dog with a bone months ago about this, and then all of a sudden it stopped. Well it's back. Joy.

Reading an article (read me) on the fabulous Dementia Journeys got me thinking. The title of "Sex after Dementia", written by Marina Kamenev, caught my eye. I went and read it.

It was a very interesting read, but made me feel like I'm being an awful wife. My view of intimacy with my husband has changed since the diagnosis of Dementia. It's not that I don't love him now - I do. It's not that I don't find him attractive anymore - I do. He is a handsome man and I'm not just saying that because he's mine, he really is. I still fancy him now, yet wanting to be intimate with him has disipated. It makes me feel like I'm taking advantage of him. There - said it. On some medication, before he was taken off it, he could appear to "not be there". I am fully functioning mentally (I think), he is not. How do I know if he's doing what he wants to do or if he's been coerced? His tastes in the bedroom have changed too. Things that I don't like. For all I feel like I'm taking advantage of him, I also feel like I'm doing things that I don't like just to keep the peace or to keep him happy but at my expense. This I find humiliating. 

Don't get me wrong. For all we're not at it like rabbits, sometimes whilst being intimate it's amazing. The other times I'm racked with guilt for both of the reasons I've mentioned above.

Having read the article (mentioned above) I now feel guilty for not wanting to sleep with my husband. It's made me think of the other side of the coin - his side. Why shouldn't he want sex? He's 38 for God's sake (and for that matter, why shouldn't I want sex - I'm 37 for God's sake). Yet I just don't. This illness isn't physical. It's mental, but maybe I need to rethink my side of the coin. Do I want to? No. Is it wrong to not want to sleep with him - probably yes.

It's hard (no pun intended) when all you hear during the day is how awful you are, how much you're hated, how much the sight of you repulses him and then KABOOM, at bedtime you are the woman of his desires. The link between the two confuses and upsets me, but because he doesn't have these connections he doesn't understand why I might not want to be intimate with him. Not wanting to sleep with him then causes ructions because I'm not doing what he wants which then compounds the "I hate you", "the sight of you repulses me" etc, etc, which then makes me definitely not want to sleep with him.

I think that for me the role between wife and carer has blurred. It's hard to snap between one and the other. It's made me selfish. Maybe not selfish, but it's made me put walls up around myself so that the canon balls that are fired bounce off them, meaning that I might not get as hurt by him as I probably would have been before this illness interupted our lives.

I sometimes wondered (pre-reading this article) if I would object to hubby having a sex buddy (for want of a better word), and I honestly don't think that I would. I often feel like it's not my husband when we are being intimate so what would the difference be if he was sleeping with another person? It wouldn't be "him" cheating. It would also mean that he could do things that he's wanting to do or have done to him that just makes me uncomfortable (and no, I'm not a prude) without me feeling used. 

Thank you Marina for your article. You've opened a Pandora's Box in my head and one, for me, where I don't think that there is a right or wrong answer.

Please don't judge my ramblings. I would never speak these thoughts out loud. Writing them down helps me, and I know that my ramblings might cause offence, this is not intention. It's not until you're enveloped in the cloak of Dementia that you realise just how much it robs you of. x

Last night I went to bed early. Tuesday's are usually a really long day and I'm always ready for bed (although I'm usually ready for bed, Tuesday just compounds this lol).

Having been doing all of the mum things of drop offs and pick ups last night, I'd not seen Emmerdale - although I watch it when I can I can't say I watch it every time it's on. Putting on the tv in the bedroom I saw that the episode was being repeated so I just clicked onto that channel. Hubby came to bed a few minutes after me so we lay in bed watching it. He'd already seen half of the one hour episode so he was restless and bored.

To aliviate his boredom he went into worky ticket mode. Oh how my heart sinks when he does this. He thinks it's hilarious. It started off with him licking my arm occasionally. This does not appeal to me. It makes me feel like a stamp. He does it so that I can smell his breath on my arm. He finds it hilarious. He then started licking my pillow. Again, this I do not find amusing. It was clammy and hot last night so when he was bored of licking my arm and pillow he would wipe his forehead against me so that I was covered with his sweat. The fact that this was the most pleasant bit of his entertainment for the evening just makes what he was did next worse (and I apologise now), pulling back the covers (still can't do the "cue" or I would have written "cue"uilt) so that he could fart on my leg. This is not accidental. This is done deliberatley with huge effort going into it. I do not like toilet humour, I don't find it funny and I never have but this just takes the biscuit and absolutely disgusts and upsets me, but last night he went one step further. Trying to fart on my face just tipped me over the edge. Sprawling about on the bed so he could get a good angle to cover my face in his fart does not endear him to me. It repulses me. I had pulled the cover up over my face because he was sitting just above my face. He is a big man and knowing that there is no way I can move him makes me feel vulnerable and not in control, and he knows I can't move which just adds to the amusement. I just had to lay there with the cover over my face with him s"cue"uatting above me (naked my I add - just to add to the humiliation) desperately trying to cover my glasses in his fart. All the while he is giggling and laughing and finding this the funniest thing ever. I just lay there with tears. I didn't cry - there is no point, but I just had tears running down my cheeks. Then as soon as it starts it stops. The bit that confuses me is how he just doesn't get why I would be upset with him - he was having a great time, tears rolling down his cheeks and the hilarity from his behaviour causing belly laughs from him. "What's wrong with you?". There's no point saying anything because he just doesn't get it.

Where is this funny? This isn't "normal" behaviour even in lucid moments, so why would anyone think this would be received with laughter? Maybe it's just me, maybe I'm the one who's had a sense of humour bypass. The thing that really unsettles me is not actually what he is doing (which in itself is enough) but the fact that I can't stop him. He's a big man, broad, tall, strong, and it justs reminds me that if he wanted to do something then I would not be able to stop him. He has the upper hand there, and I don't like that. I really don't.

Controversial though it might be, I would appreciate my husband being GPS tagged, not because he's getting lost, but because I haven't a clue where he is. He's oblivious to this. "You know I'm going to ...'s house", "You knew I was visiting ... on my way back", "I don't have to tell you what I'm doing or give you a time I'll be home - who do you think you are? My mother?".

Sunday morning (which I had thought would be Saturday night) was 1.30am when he returned home from his friend's house. Monday morning (which I had thought would be Sunday night) he returned at 1am. (The friend's other half must have the patience of a saint because I think I'd have kicked him out if I'd been her, also remember that our car alarm is on the same sensor as next door's door bell...). It's not that he wanders, it's not that he gets lost, but he simply loses track of the time. It doesn't mean anything to him. The only thing that matters is the things on the calendar that are relevant to him. If I need the car to get the girls somewhere - so what? It's not the end of the world if he's late. Even with things like going to visit someone, he doesn't care. Ten minutes before we're due to leave the house he'll decide to have a shower, or shave his hair off because it's too long, never mind the fact they're making dinner or tea and timing might not mean anything to him, but it might to the roast chicken in the oven that's either going to give us salmonella or be burnt to an absolute frazzle.

He's up and he's down at the moment. I think he's trying to convince himself that he's not getting worse, that infact if anything, there's nothing wrong with him at all with an "I'll show you all" kind of an attitude. What he doesn't realise is that in putting all of this effort into trying to appear like nothing's wrong, it infact has the opposite effect and ends up with him slurring words, stumbling over his own feet - he's even got a walking stick in the kitchen (lying on the floor infront of the little pantry, not that we have a big pantry - although what good it's going to do lying on the floor is beyond me...) because his knees are giving him so much pain that he's struggling to walk some days.

Last night at about 3.30am I heard an "arghhhhh" and opened my eyes in time to see him starfishing his way out of the bed. I managed to catch his arm only for him to balance himself precariously on the bedside table. I got him back into bed before he hit the floor with a thud, but ask him about it this morning and I'm making it up. I appear to be making a lot of things up at the moment. I can say something to him and a minute later it's gone. I understand this. I understand his forgetfulness, but it's not him being forgetful because it was never mentioned in the first place. The girl's names are just randomly thrown about in the hope that he gets one right and if he doesn't, it wasn't that one that he wanted to speak to anyway.

It seems that sometimes, with Dementia, the person suffering from it seems to be the least affected by it, or in our case anyway. Whilst he's on his mind wandering it doesn't bother him in the slightest. It's when he's here with us, that it causes frustration and annoyance for him - and whilst I want him here with us, sometimes I wonder if it's kinder to him to be in that happy place. The sad thing about that is that we won't be there with him. The upsetting thing is, he seems to be going to his happy place just a little bit more often than he used to be.

The girls were up and ready to go off for an exciting morning with Granny *********. Biggey and middley went skipping off to the car at 9.30am and the knock on the door to drop them off was just after 12pm.

Granny ********* said she had something to tell me... Middley offered "it wasn't my idea" followed by "it wasn't my fault". Non of which made me feel any less sick in the pit of my stomach - my girls are more than capable of getting themselves into trouble or mischief, I'm big enough to admit that.

In the car on the way to the garden centre for their cup of hot chocolate and a piece of cake (I want to go...) Granny ********* mentioned that she had a sore ankle and that she wouldn't mind having a wheelchair to be pushed about it. Granny ********* was to pick up off the floor when biggey arrived at the end of the pansy aisle with a wheelchair, having gone and asked the services counter for one, and had actually signed for it before taking it Granny ********* so that she could be pushed around giving her ankle some reprieve.

Bless her, once she had regained composure, and had stopped laughing, and her embarrassment had gone she duly got into the wheelchair and let biggey push her round for the morning. The most embarrassing moment for my biggey was when returning the wheelchair the woman gave it an inspection to make sure she hadn't done any wheelies or donuts and caused any damage.

Note to Granny *********. My children take things very literally. I remember being pulled to one side to be told that biggey had gotten into trouble at nursery one afternoon because she'd been told to paint an apple. They got upset when she did. My response? "You should have told her to paint a picture of an apple. She did what you asked her to do, it's hardly a three year old's fault if you give her the wrong instructions". 

The sun is shining and that seems to make everything a little better. I've been so fed up with the miserable grey days where you can't even hang your washing out. Add that to how things have been this week and the weatherman (or woman) would have been describing me as "grey and murky with rainshowers leading onto the occasional downpour - don't forget your umbrella". Nice.

We've had a week of him hating me with a passion, the girls getting into trouble for doing nothing wrong, him wanting me dead etc, etc. Then it came to the doctor's appointment, with me having told them about how things have been, only for them to say they'd probably up his meds at the next meeting. They know his moods and temper is fluctuating, yet four weeks seems ok to run with this. Although, if needs be I know I can ring them if I really need to and an emergency appointment would appear under the veil of one of them going on holiday so they need to bring the meeting forward - in the meantime, I sit waiting for the bomb to drop, trying to be three and four steps ahead of myself to make sure that the pond remains calm knowing that even the slightest of ripples can cause the four of us reaching for our life jackets. The only person that seems unaffected by his mood swings is the Captain of the ship.

I've had a week of having to drop everything to complete his commands, which has a knock on effect on what I should be doing (being a housewife) which then has a knock on effect to keeping the pond calm - it's a vicious circle really.

The sun being out makes a bit of a difference though. I've noticed this over the past few months. I don't know if it affects his mood or if it's mine that changes when the sun is out. He's either calmer or I'm more mellow - I think it's the latter. If the sun is shining it gives everything a sunnier lilt. It makes getting up in the morning easier for me, even when I'm on my knees. It means I can get out of the house to hang out the washing, and sometimes that five/ten minute reprieve is sufficient enough to put me back on kilter.

Food can be different when the weather's nice too. It's not all heavy, warming foods which seem to weigh you down (in more ways than one lol), but the colours of veg change in this weather and your plate just looks happier too. Yesterday I gave hubby his lunch. He will eat whatever is put infront of him, whatever the amount, and if there isn't sufficient he'll sit with the empty plate outstretched infront of him waiting for you to go and fill it up. I got him a treat yesterday. A bag of "share" Yorkie buttons... Somebody might want to inform Mr. Yorkie button man that putting the "share" comment on the area that you open the bag is a complete and utter waste of time as once the bag is open it's not visible anymore, and my husband devoured them like a horse with a nosebag on. "Share" - that'd be right lol.

Sunny weather means that the girls can go out and play. Sometimes they hate being in the house. You don't see them, they're up in their rooms, they want a "break" from daddy, they know that if they can go under the radar that they will evade any shouting and ranting that might go on. Biggey commented the other morning about how horrid daddy had been to me the night before and how awful the things he said were and that "they're not true mummy". This was whilst they were in bed - so even their bedroom doesn't give them a complete break. Outside does.

I'm hoping the sun continues to shine for a while longer now - until after the summer holidays when the girls go back to school and at least get those six hours peace from home would be nice. Optomistic? Yes, but that's what happens when the sun comes out. x

Yesterday's appointment went as I expected. I'd rang to tell them how its been going and they want to see him in four weeks time when they think they'll up his meds. They think.

So I was a bit flat yesterday afternoon and today. In the process of swapping over phones and sim cards I had missed a call from the girls care worker. She takes them out every now and again and they call her Granny ********* because they think that much of her. I rang her back and she's going to take them out on Saturday. Before she went she asked how I was. I answered with my usual "fine thanks". That's when she said that she would come to the house and have a natter with me, or we could go out and have a coffee. It wouldn't have to be chatting about how things are, but a change of scenery and a different face to blether to might cheer me up. She doesn't realise that what she said meant so much. It's her job to look after the girls. She has to. That's what she does, and I'm eternally grateful for what she does - it's a lifeline to the girls. Yet to offer me a coffee and a natter, something that she doesn't have to do, something that is going out of her way to do... That is kindness and I'm not ashamed to admit that I shed a few tears. She said we have similar outlooks in life and see the humour in adversity and that's how to get through it. Smile and the world smiles with you. Well, thanks to Granny *********, I've had a smile on my face today,and when I write my book she'll get a "thank you" on the first page :o)