I've just read a tweet saying that there's 17,000 young people with dementia. I'd love to know where they are, because I've never seen any. When we go to the hospital we have the other patients try to tell us we're in the wrong ward/waiting room because we look so out of place. They think we're off our rocker - which to some extent is true lol. Our dr's, nurses and the girlies pscyh people have never come across this illness in anyone as young, which just goes to show we can't even get being ill right - if we can do it differently we will lol.

It always upsets and unsettles him when we're in a room full of old people, not because they're old but because it's like an open portal showing him what's to come, never have we seen anyone in our own age bracket.

I've been pondering about whether to write this down, or whether to keep it buried deep in my head. I'm still pondering to be honest, but will see what happens as I type.

Guilt - it's a horrid, debilitating thing that makes you feel bad for having thoughts you don't think you should be having. I'm on a double edged sword with mine. It's what hits me hard and usually begins the run into that wall that I try to avoid but sometimes crash against, and it's usually when things are going ok, when there's a bit of a lull, a bit of "forgetting" what illness he has, when I start to feel comfortable.

Mine is like this...

Scenario One.  "What if he dies from this illness? I'm 37, what will I do? I'd be a widow, a young one and without him". I've been with hubby for twenty years later this year. I've known him longer than I haven't, and the thought of him not being around can reduce me to tears - and he's still here, so why am I tearful? Never mind the fact it's him going through the illness, it's him this wretched beast is shutting down slowly, it's him that knows what he's probably going to miss, knows who he's going to possibly forget, and yet I'm selfish enough to worry about what will happen once he's gone.

Scenario Two.  "What if he lives to be ancient? I've could have another forty or fifty years of this, with it declining, him getting worse, me being unable to cope. Him forgetting who we are, forgetting our names, not being able to walk the girls down the aisle, know who their children are etc. etc." I can't imagine him not being here, but the guilt of this illness turning him into a shell of himself terifies me also, how I'd manage for decades more, cope, finance things, deal with him not knowing the girls or I - that breaks my heart and can reduce me to tears also - and yet again, me being selfish and worrying about me - again.

Middley is the only one who has twigged that daddy might forget who they are. "He won't forget you mummy, you're too important" (eyes prickling now), and littley, bright as a button piped up "we'll just wear name tags like we do at school when we have a new teacher".

These are the things I hate about this illness, how it robs people. It's robbing my husband of his future, my children of their dadddy, childhood and future, and me of my husband.

It sits like a shadowy fog in the corner of the room and it just laps up around you when it sees fit. It curls around you and slips back into the darkness to let you feel like everything is going to be alright only to tug at you harder the next time it feels like it.

Dementia is like a still calm lake. One you can see your reflection in clearly. Then it throws in a pebble, and that's when the ripples reach out causing destruction and devastation in their pretty, calming escape to the edge of the pond. It effects everyone. No-one is free from it's reaches, the ill or the carer. That's why we all get up in the morning and just get on with what we have to do to make the water as calm and as ripple free for as long as possible, however exhausting.

I can't decide if I'm wide awake or cream crackered. Last night went a bit hectic and I ended up with biggey and an injured hand - 5hrs later (due to unforseen circumstances, an alarm, the police turning up to the hospital and driving off and then a swat team turning up - not complaining, there's a telly in casualty but there's no signal - go figure, so it added some excitement to the wait. The character was taken away having been aggressive to staff by said police with a hannibal lecture style face mask on... they weren't sure if he was high or needed assessment - which unsettles me because what if hubby was to go off on one - would they take his illness into account or would I be visiting Parkhurst - bit of a commute to the Isle of Wight, but I can't think of any that's closer lol), it's a bad sprain, but it's meant writing to letters to English teacher for lack of homework and PE (do they still call it that?...) teacher to excuse her from class (I did think she could do her English homework during PE, but whether they think of that, we'll see...).

Of course, hubby's still in bed - so I'm walking around (that would be an exageration - I'm sitting) trying to make as little noise as possible. I'm pondering as to whether the kettle boiling might wake him, but do so need caffeine... and now I need the loo :o(

There's me trying to be the domestic Goddess that I am (?... pffft) and make some Onion & Lentil soup (tastes nicer than it sounds - promise) and I go to the trusty Mr. Oxo stock cube limited edition tin that I have. Open it up to find the bargin basement stock cubes that are contained within (before you pass judgement on my domestic Goddess statement, I do make my own stock normally, just we didn't have chicken for tea on Sunday night) and what do I find. Lots of stock cubes with no labels on. Rows of shiny, silver cubes all patiently waiting to be added to whatever delectible delight I decide to make next, and I can't work out what's chicken, vegetable or ham. Just as well there's no veggie's in this household...

Seriously - I'm fully functional (normally), so what chance does he stand when labels aren't even added? Having said that, the chances of him going to the stock cube tin are limited - but that does remind me of the day I found the missing tin of peaches in the microwave...

I haven't decided what kind of day today is. The girls got up well this morning, with no undue bouts of World War 3, that is until 2 mins before leaving the house middley banged into littley's bag hung on the bottom of the stairs and all hell broke loose. Never mind, it was 2 mins of carnage before they left for school so it wasn't too bad - let middley put her frustrations into education, it will benefit her in the long run.

I've just spoken to Mr. Orange regarding my phone bill which seems a tad excessive, "don't worry Mrs. Constantly Trying - we brought out a new package in February which is the same cost as what you're paying now but gives you unlimited mobile to mobile calls and unlimited texts, we'll just put you on that." Great - why couldn't you have put me on that in February?... hey-ho, these things are sent to try me, and they constantly do.

Hope you're having a happy day with the little bouts of sunshine that seem to make all the difference :o) xx

This has to be my favourite comment of the day... (so far)

"You're not ugly with lipstick on - you could get yourself a sugar daddy to pay the bills. Just don't mention you have kids or an ill husband, and he'll see you're fat for himself"

Sometimes I am stunned into silence. This was one such occasion. I don't know whether to take offence or be complimented LOL.

There I am waiting for him so he can go to the dentist's. "Have you brushed your teeth?" Back to the bathroom for him them... 

You know when you get up in a good mood. You've had a good night's sleep for once. You see jobs to be done and you're happy to get on with them. He's still asleep upstairs and you feel guilty for enjoying the peace... That's when you hear the floorboards creek upstairs and your heart sinks because you know he's never been a morning person and until he's had that first cup of coffee and his meds he's going to be crabbit and bad tempered.

It's like you're walking on eggshells. Those tablets are really good, I can't deny that, but the awful things that come out of his mouth, the attitude and huffing and snuffing just have to be tolerated until you see the fog lift from his eyes and he becomes "normal" for want of a better word. The strange thing is, his words and sentences are jumbled, back to front and upside down until he does have that hit of caffeine and tablets.

I just think that at the moment, he's a little bit worse than before. He has a big appt coming up and he always gets worse before them. It's like he pschys himself up for them just so that for those couple of hours where he's with a dr, he appears normal and nothing's wrong and what are they all whinging about, he can go back to work and then he'll sue for misdiagnosis. The lead up to these appts and the wind down from them just make the girls and I apprehensive and feel like a tower of cards ready to fall down. It makes you feel like you have a knot in your stomach all the time, and he's the only one that doesn't get it. That's because there's nothing wrong...

I spent a week with a bid on ebay - and I won - YAY. The top/dress arrived this morning (three days early I hasten to add) and oh my God, it is amaaaaazing. Being a big 'un, this makes my clevage look va-va-voom, and actually makes the rest of me look slimmer - I don't know how it's done it, but seriously - I'm a very happy bunny this morning. On a bonus, there were no bills, but no doubt they will come tomorrow... 

Don't you just love it when you get up early - I was up before the central heating came on, had a moment of panic incase the radiators weren't working, then realised the time. My particular favourite moment of the morning so far, other than being told "leave me alone" by eldest (only wanted her to go in the shower for God's sake) was putting on lovely clean clothes (that still have the washing powder scent on them) only to proceed to spill coffee down the front of my top - great...