I can write at the moment because hubby has gone out to return a coffee machine he bought from the Salvation Army that doesn't work. That would be coffee machine number two - do we really need that many?
I'm finding this illness called Dementia a tad tedious at the moment. Don't get me wrong because I have been taking it as it comes, but these past few weeks have been hard work and the only way to get along with it a little better is by having no interaction with my laptop - which I struggle with because that's how I vent my frustrations.
For all hubby hates me he adores and worships me at the same time. He doesn't like sharing me with others. Middley upset me on Saturday night and I went upstairs to put washing away just to get out of the way and to calm the situation down and I wasn't at the top of the stairs before I heard all three girls screaming at hubby. He had come into the living room and grabbed Middley around the neck and I got down the stairs intime to stop him from hitting her. The girls were terrified. I was terrified but he just looked like he'd "come back from where ever it was he had gone".
I sent the girls to their rooms to calm it down and spoke to him telling him that it wasn't acceptable. I wasn't undermining him, but I wouldn't tolerate that behaviour. He looked oblivious. I went up to their rooms to talk to them and spent ages trying to calm them. He came upstairs and into their rooms and I told him that when they were in their rooms then he wasn't to go into them. That they need somewhere to go and that following them in would further upset them. He just didn't get why they were upset - he'd done nothing wrong.
He apologised to Middley for hurting her. He had not meant to. But seriously? What am I supposed to do now? I've got the girls begging me and making me pinky promise not to tell anyone. How much more do we have to take before someone listens because I was as good as laughed at at the last consultant's meeting, and if we get hoicked into another meeting before January he is going to know it's on the back of something I've said. We cannot win. Constantly Trying 0 - Dementia 1.
We went down to my mother's yesterday to see my lot down there and it was lovely. He drove and I had a few glasses of wine (throughout the day, not in a oner - although I'm thinking that might not be a bad idea...) and there was 9 of us all together and he was on his best behaviour. He'd bought a fire surround and an electric fire from the Salvation Army (add that to Gumtree ban) and he was happy as larry. Except last night he decided he wasn't so out comes Gumtree (effing thing) and off he and my mum go in search of a new fire. When he came back he was convinced I was drunk (I was not) and then went all "horrid hubby" on me. I can't argue with him because that would be the confirmation of me being drunk that he needed. We came home and he was lovely and we put his fire together and all was well. We went to bed happy and got up this morning.
I made him pate on toast and was told it was no good being nice to him now. He happily told me how evil and horrid and vile I was last night and how I'd made a royal show of myself infront of everyone. I can remember all of yesterday but now I'm thinking that I've drunk more than I had and the reason I can't remember what he's talking about is because I was rat arsed. I wasn't, but that's how he works. He plants a seed of thought into your head and then you start doubting yourself and second guessing yourself and by the end of the morning I was convinced that I was an alcoholic. I am not. I've texted mum and sister apologising for how awful I was and they didn't know what I was talking about. So I have made a prat of myself. Constantly Trying 0 - Dementia 2.
He doesn't like sharing me. I know that, but to what extent can I be exclusive to only him? We have three girls and the harsh reality of this illness means that whilst I tootle along with this illness, our girls have to come first. This is the first time in almost two years where I now think that they can't be left alone with him and that is awful. If I have to be not here, then they have to come with me or I'm going to have to have someone else here. I can't have any doubts about their safety and that makes me sound awful (again) because it's not my hubby who is awful it's that other horrible man.
Dementia really sucks.
Thanks to the wonderful Amoxycillin (or however you pronounce it) I'm now feeling an awful lot better. I just need to get this blinding headache under control and I think I'll be back to normal - whatever that is lol. I also mentioned to my doctor about our last appointment with the consultant and she was just as ruffled as I was. She offered to speak to the consultant for me, but I asked her not to this time, but that I felt happy that she had noted my concerns because that way it's written down and if it comes back to bite me on the a**e, then I can say that I've voiced my opinions and that they were ignored.
Anyhoo. Watching Coronation Street tonight the Hayley and Roy story got me thinking. I know the illness is different, but what if my hubby brings this conversation up?Hmmm. Which side of the fence would I choose to sit on? About two years ago when he was told he couldn't drive anymore and there was the prospect of him not getting his licence back he told me that if he didn't then he would finish it there and then because without his licence he had no life. I responded by saying that I understood, but if he did that whilst I would understand he would also have to realise that I might have the girls with me when I found him. Now in hindsight this might seem a very simplistic response to a very complicated statement, but I was thrown, I really was. He got his license back and I haven't thought about that conversation since. Until Coronation Street.
There's two ways that I can see that I could respond to this statement if he made it again. There's there "ok - if that's what you want" way or the "don't do that, I don't want you to" way.
Sitting thinking about both of the above and I realise that both are quite selfish. If I say "ok", is it because I'm thinking of him and what would be better for him or is it because it would make life easier for me? It would cut out a lot of the crap that this illness brings with it, and whilst we're nowhere near what a lot of people deal with on a day to day basis I know it will come. It would mean that we wouldn't have to go through the cruelty that dementia brings with it, that we get to the end without the long, hard slog. Yet if I say "don't do that" is it because I'm thinking about him or because I'm being selfish by wanting to keep him till the very end even though it means that he will be so ill and confused and "not him" but he'll still be here.
I can not see an easy way to answer this as a partner of the person who wants this. I don't blame anyone for wanting this. I understand their reasons, I really, really do and I think that if I was in a position like this then I would probably make the same decision as Hayley is, but then this doesn't make it any easier does it? It doesn't make it any easier for any of the people involved. Whichever way you respond to this you would be left thinking "are you doing the right thing?" or "have you done the right thing?" and gosh, I just think that it is such an awful position to find yourself in, a no win situation that you're damned if you do and you're damned if you don't.
I don't think that there could be anything worse that my husband could say to me than this - and I hope to God that it isn't said in the future (because we skated over it first time round), and hoping that this conversation doesn't arise makes me selfish, again. Y'see Dementia? I know we win the odd battle or two but I also know you'll win the war, but in the meantime we'll put up a bloody good fight - just so you know.
I've often described Dementia as a rollercoaster that never ceases, it never stops and it just won't let you get off, not even for a toilet break or to have a sandwich.
The meeting with the consulatant on Wednesday sent me into a fettle that I've not had before. I am not a stupid person. I do not appreciate being spoken to as if I am a stupid person. I have spoken to his nurse about how things are and voiced my concerns to her because I can't mention them in a meeting with hubby because they don't always match his opinion of how things are at home. She passes these conversations onto the consultant, I hope, but on Wendesday I just don't know what happened. It all seemed to go out of the window from the moment the meeting started and her tone of voice with both hubby and I made both of us feel like the meeting was just getting in the way of what she should be doing. Excuse me, but hubby is one of those things. I mentioned mood swings, his driving, my concerns about both, how others are noticing a difference in him, how he can appear to be high one moment and low the next to his nurse on the phone. All the things that mean something to us in our house because of how we have to deal with things and the only way I can describe the consultant's indifference is if this conversation hadn't been passsed on. The nurse knows that I can't speak infront of hubby, so when I was asked "Constance, what is your honest opinion of hubby's driving?" I could have slapped her. I really could have done. What is the point of me speaking to anyone and saying what I say if my comments of "this can't be repeated to hubby" or "you can't say I've said this" is going to be so completely disregarded?
We came out of the meeting with hubby able to drive with her permission whilst DVLA are investigating him. There was no mention of meds being upped. "When would you like your next appointment with us hubby?" for him to come back with "January" - so January it is then. We had a meeting set for November, but that's obviously out of the window. Oh... Don't forget the "well don't forget, if you or Constance needs any help before then you just need to ring and an earlier appointment will be made". Should I slap her now?... Hubby is never going to ring and ask for an earlier appointment, so if an earlier appointment is made then it's only going to have come from me - and he knows that because despite this illness, he remembers the things you'd rather him forget and he'll know I've rung them. This means that we go through Christmas and New Year without him seeing anyone. Oh joy, because Christmas and New Year isn't stressful is it? It's not loud and noisy and you don't have people visiting or visit others do you? I feel like another one of those life jackets has been chucked off the dingy. Seriously? I know they're clever and I know that they have all the "cue"ualifications that they have, but where is common sense? Would they like to come and live in my house for a bit just to see what it's like or should we just go along with the "nowt's the matter cos he says so" approach - obviously the latter.
Hubby has been on about telling his nurse to sling her hook. He has decided that he doesn't like her. She askes all the "cue"uestions that he doesn't want to answer and I've tried to tell him that they work as "good cop, bad cop" because that way the consultant isn't asking anything and she listens to all the answers. The nurse wasn't there the other day and she had to ask herself, and now he doesn't like her either. To be honest, neither did I. I'm looking forward to the nurse ringing to see how things are going because what she won't realise is that I will tell her, and I'm not impressed. I've settled hubby with the knowledge that if the January meeting is the same as the one we've just had then I won't stop him from saying what he thinks, and if that means that we just say thank you for the meds and leave the meetings out and just deal with his GP (the man who hubby thinks is top notch - and to be fair, he is) then that's what we'll do and that I will support him with that decision. These meetings are not supposed to leave you feeling the way we felt after we'd left the office. Hubby is young. I know he is different because of that, but he is not stupid either. The language they use with him should reflect this. Not make him feel like a toddler or a "doddery old person" (his words), and I agree with him. It took two days to get him out of the fettle the half hour meeting caused and I'm not impressed.
Anyhoo, that's my rant over lol. We've had a few giggles over the past couple of days too - thank God. He's decided that he's blind as a bat now, and really should wear his glasses that he's had for a couple of years but never needed...
I bought a new pair of boots and had the "they've been in the wardrobe for ages" comments all ready, but when he saw them last night it was "see, your legs aren't as fat as they were cos you can pull them up - by January you should be able to tighten the top". I think that was a compliment but I felt cheated in the time I spent thinking about how long I'd had the boots...
Today I've been told that I should moisturise my boobs because "oh, your boobs are getting wrinkley - they're starting to look like Deidre Barlow's" - well if that doesn't put you in a good mood on a Sunday morning, I don't know what will, but I can tell you this... I will be moisturising like a manic moisturiser who needs to moisturise because of that comment.
Dementia certainly is a rollercoaster isn't it? You can have up days a
nd down days and variations within the day, but when you get a little giggle and the feeling of being connected - like with a smile or a little twinkle in his eyes, then you forget the downs and just concentrate on the ups. You have to. It's what gets you through the day :o)
Well I think that's me over the cold :o) It just seems to have hung on and whilst it's not been a full in your face, everything at the same time that lasts a few days it's staggered itself over about ten days with different things each day. I just need to get rid of the cough now and that will be everything gone - yay.
I must admit that the past week and a bit have been a hard week and a bit. I don't know if it was down to me being under the weather and finding it easier to feel disgruntled or if things have taken a turn for the worse and I'm just stressing about it. I've said in the past that I feel more at ease when things are difficult because when they're running smoothly I'm always waiting for the "bang" to happen, but this time the "bang" has hit me hard - and this is a new thing for me, which is something that I'm going to have to deal with, my response to him is not his fault.
We had the funeral of the close family friend last week. Hubby seemed to be doing very well about this (having gotten drunk over the weekend and getting things off his chest), and we drove down (over an hour) and the service was lovely. I could see he was unsettled during the service and I couldn't stop coughing and this irritated him. The thing that amused me was that after the service his mum handed me a packet of mints to help me with my cough - could that not have been done during the service? lol.
We went to the wake and he was fine. We sat with his parents and siblings and we chatted and had a giggle but then he started to get slightly agitated. It didn't help when I went to the buffet and filled a plate for him. He could do this himself, he's more than capable - but I have never ever not gotten the food for him, I've always done it, much to my annoyance at the time but I actually like it now. This was a shocker because usually he just expects me to do it, so to get wrong for doing it, infront of his family, was a new one on me.
At the end of the wake I offered to drive. He said no (of course he said "no", what else should I have expected?) and we got in the car to come home. Now whilst his driving was fine he was tired and upset about the day, but his driving was fine. Then the blue lights came and he swerved to pull into a layby. That was the first I knew that something was wrong because I'd been choking and looking out of the window when he did what he did to be stopped and he'd done it so well that I hadn't even noticed it when he did it. He had crossed two white lines whilst overtaking a wagon (which was speeding but that's by the by) and the policeman stopped him. Hubby had the window down and had apologised before the policeman had said what he was stopped for. Hubby knew exactly what he had done and off he went to the police car. It was like sitting in an episode of "Police, Camera, Action" and I don't suppose it's an episode that his mum and dad will ever forget...
He came back to the car saying that he'd been arrested and it's only because he'd known what he'd done and apologised for it that he was de-arrested and given 3 points on his licence and £100 fine (dear God - £100 fine). He continued to drive home and he was fine. He was calm. This was worrying.
Now you all know that DVLA are investigating him for his licence to drive once his current one runs out in a couple of weeks. Before we left for the funeral I had been on the phone to the DVLA to see what happens if the result hadn't been decided upon before it runs out and I was told that he would be able to continue to drive if his doctor was happy with this - until the decision with a Yay or Nay has been made. Well that went well didn't it...
On the back of being stopped hubby has decided that he's lost his licence. Why the calmness I don't know because I've had to fight tooth and nail to get it so he can keep it, but now he'd just resigned himself to the fact that he was going to lose it. I was told to take his card and remove the £100 from the bank to put it onto my prepaid card so that I could pay the fine and that was that. Well that wasn't that... I gave him his card back only to be accused of stealing the money from his account. I'm glad that I took a receipt from the hole in the wall because it proved how much I'd taken out and he couldn't accuse me of taking any more than I had. I went to pay the fine only for the online system to tell me that the information that I'd entered was an "invalid field", so I rang the number on the ticket and they didn't know what I was talking about and gave me another number to ring. The poor gentleman on the other end of the phone couldn't find what I was talking about either and had to go through our details via our registration number and still couldn't find the fine. I think he thought I was making it up, but then said that maybe the policeman hadn't completed his paperwork and that we should give it another week before trying to pay the fine again.
Bloody hell. Since then till now, hubby has decided that he doesn't want to pay the fine. Whilst I was out on Saturday (I never leave the house and on the rare occasion that I do I come home to this...) he had rung the police. He wants to see the camera evidence of this misdemeanor because if there isn't one then it's only the policeman's word against him. I calmly (and this took some doing) asked him why? I told him that if he was going to argue it then it would mean him going to court where he could lose his licence on the points system, have a huge fine and end up paying court costs. I asked him how he could change his mind when he'd admitted (infront of me and his parents to what he'd done) and he just said that he would deny this. I've since been told I'm not to pay the fine, if it ever gets onto the system.
The predicament that I'm in now is that whilst he did something that he shouldn't have done, and it's sod's law that he was caught, it isn't actually this that is causing me concern. What is causing my concern is his reaction to it. There have been occasions when I've thought he shouldn't have driven, but this one is something that anyone could have done. I'm concerned about his rationality about it since. This is the thing that the dr's are concerned about, his judgement and whilst I'd be upset for him that he loses his licence because of this incident, his judgement over his driving and his judgement about arguing the toss about the driving is what could lose the licence for him, and I can't get him to see this. This misdemeanor will not be taken into account when the decision from DVLA is made (and why isn't it?), but his behaviour is, and at the moment that's all over the place. I've got his consultant to speak to this morning and whatever I say is going to drop me in it from a dizzy height and cause further aggrevation for him. It's a no win situation.
Add to all of this the puppy that isn't acting like anything other than a puppy, the up and downs of his fettles, the arguments (albeit one sided) and it's been a week and a half. He was having one of his rants yesterday morning and I turned to him and said that enough was enough. That's when he went "go and get me the suitcase from the attic and I'll leave" in his nah nah nah naaaaa nah voice and I said no. I just said that yes, enough was enough but that it wouldn't be me that left. He could go. I said that it appeared to be me that was bringing him down and making him worse so it would be better if he found somewhere (harsh, I know). I said that he's like a light switch that can turn on or off at the flick of a button. Everyone else gets the "nice" him and that because he's nice to them we get the "not nice" him and that it's not kind. I said to him that I look forward to a Saturday night where we listen to music on you tube because that's the only time during the week that I know he'll be nice to me, because the rest of the time I'm being called a liar, a thief and any of the other nasty things he wants to say. He looked shocked. He genuinly did. For the rest of the day he was lovely. Until tea time and then it just started all over again. The girls went to bed and I went to our bedroom to tidy and sort clothes because it was easier than listening to him chunter about how awful I am. Yesterday morning I had been shouted at because of socks in his drawer and I had to go and think about them and how I'd put them there. The things I'm getting wrong for are becoming more and more from left field. I told him that I couldn't remember putting his new socks away, that I thought that they were still in their packaging. Well he hadn't done it so it must have been me. I then said that maybe it was and that I just can't remember doing it and then I was accused of trying to lie to hide the fact I hadn't done it. I was well confused by this point and just kept calm and walked away because it's something I can't win by discussing it with him - although it's not a "who's won" kind of accusation because it just self fuels itself, and at least if I don't bite it ends "cue"uicker.
I woke up this morning and just lay in bed. It was light (which is lovely) and I was warm and snuggly and was happy just to lay there for a few moments and he rolled over and put his arm around me. I know. Don't fall off your chair or anything, but seriously? A cuddle. I couldn't believe it. I haven't said anything because he was asleep and won't know he's done it and would deny it anyway, but it made me smile because I honestly can't tell you the last time he did that and it was lovely.
Hello. It's been what seems like an absolute age since I've written my daily ramblings (about ten days I think), and I apologise for that. I had "the wall" come crashing towards me and it's been a bit all over the place here.
I've dusted myself down again, I think, and I've had a few days to think about how it's all gone wrong, for me anyway - he always seems fine when I hit the wall.
I was feeling a little down anyway and in a conversation that I had with a family member I was told that a psychic had told her that "we're together, but we're not together, but it isn't an affair". BAM. That was it. The wall. Whether you believe in that kind of thing or not, this lady hit the nail bang on the head. That's exactly how I feel. We are together but not together.
It all kind of unravelled after that, although to be fair I do think it was on it's way anyway.
We've had a close family friend of my husband's die. That hit him hard. We've had him conversing with God ("because he converses with the "terbibilly" ill and mental people") and he's made his peace with him, but I'm to know that I'll never be a part of the family and will always be an outsider. We've had the mood swings show sign a little more and the trying to keep the house calm and silent upped. We've passed the MOT, but are now stressing about his driving licence. We've had the social worker come out to the house with the intention of being our social worker no longer, only for her to change her mind by the end of the morning (thank the Lord for that because if I'm truthful I honestly think her saying this on the phone to me was the beginning of the wall appearing). We've had the "Constance's mum. Do you have any lesbian tendancies?" asked - her face was a picture and I'll take that one with me to the grave (no was the answer if you're wondering lol). Oh, and we also had a five month puppy introduced to the family that I didn't know was being introduced.
It just seems to have been ten days of juggling balls where I've dropped a couple on more than one occasion. My sister is coming up to stay the night tomorrow, and I'm looking forward to it. The fact she can get hammered on Lambrini is just embarrassing because she can hold her bevvy, but I am looking forward to the company. So I'm going to keep my chin up, go and get the polish out and hoover away this afternoon. I have taken a bit of a shine to the polish scent (see what I did there?) and now know that enough has been used when the dog is sneezing and crawling across the floor combat style.
Thank you for your patience, and for the messages on twitter that I've had to check up on me. It is very kind and it is most appreciated. You really are a lovely bunch of people. xx
I'm coming to the conclusion that sometimes this illness feels like we're free falling. Having jumped out of a plane and the only time we'll hit the ground is when it rushes up to meet us. Sometimes we have a parachute on, other times it fails to open. I kind of feel like we're on a "fail to open" moment.
Hubby seems to be in his own little world whilst still being in ours. I don't mean that he's "not here", I just mean that regardless of what's going on at any given time, it doesn't matter. If he wants something done it's done, whether you're cleaning the toilet or not. It's not an issue as such, but it's sooo frustrating. You're trying to do all the things that he's wanting you to do but then get stopped from doing it because he wants something else done now.
I've only just noticed over the past couple of days that he's using my name a lot. There will be complete silence as he's varnishing away in the kitchen and you'll hear "Constance" and he's wanting you to give your thoughts. I'm now savvy (yay me) and say "well, what do you think?" or "hmmmm... how do you think or feel about that?" rather than give my opinion first because then I can gauge how my answer will sound. If it's something like "Do you think I should sand down the varnish and then give it another layer?" I can say "What are your thoughts? Do you think you need to do that?" and that gives him the chance to say "I'm not sure. If I do it will go darker" and then a conversation can start about how dark you want it to be and I can say "I'm happy with what you've done, but if you're unsure or not happy with it, then why not sand it down and give it another layer". That way the decision is his, I've not told him to do something and I can back up decisions which ever way they fall. I'm going to keep using this process until it works no longer :o).
I had a call from Hubby's social worker today. She wants to come out to close down her being Hubby's social worker. Now whilst we don't use her now, the knowledge that she was there in the background was comforting. It just feels a tad like one of our airbags on our little boat with no engine has come off. I have a horrid feeling that once we don't need her we will - does that sound stupid? Yes, it probably does, but I know what I mean.
I am paddling about like buggery here trying to make that Swan swim gracefully across the water, and unless you're in the house you don't see it and it looks like the water is calm, but it's not. It's choppy and and can veer onto 5" waves, but I try my best to make it look like we're just coasting along. The sad thing is that I seem to be doing such a good job that the people in place to keep everything ok seem to be jumping ship (like what I did there lol).
Oh. I haven't even got that Sonic Brush cleaner thingy from my mum yet, and already the comments of "even your mother can see you're doing no housework" comments are rife. I mentioned to him this morning that I'd had a really good sleep last night and he turned around and said "oooh - that means you'll get lots of cleaning done today then". I just smiled, but I will be going around the house with the Lemon scented furniture polish just to make sure there's that clean smell for him walking through the door :o)
I think I could work in MI5 or something similar. This Dementia m'larky doesn't half make you good at being deceptive and duplicitous lol.
Yesterday I had a day off. I did absolutely nothing that didn't need to be done (that sounds back to front doesn't it lol). I cooked and washed dishes but that's about it. Hubby was at a friend's house and I went on strike, not that I'm brave enough to admit that to hubby though. I watched tv, had a snooze, walked down to the Post Office to get the new road tax, and other than that I did very little else.
Now you might think that I enjoyed myself. No I did not. I felt like a spare part, redundant, useless, but never the less I did next to nothing. Hubby came home in a good mood, and I was spared the normal ranting, until about bed time, but boy did my dad get the roasting - not that my dad knows about this, and I shall keep it that way. My dad dared to speak to my brother whilst he was on the phone to hubby saying that he should get off the phone and think of his phone bill... Well, you would have that that dad was the Devil himself. How dare he? I just rolled my eyes and continued to watch Doc Martin lol.
Come bed time and I got the rant. I just let it slide over me. I'm getting better at this now but I'm not saying that it's easy.
Well where do I start with the after effects of yesterday's comments from me?
He went off to the shops, with a shopping list and Biggey - which is very unusual because he doesn't normally appreciate other people going with him, but recently he's asked his dad to go with him to shops and taking Biggey with him was as much as a suprise to her as it was to me. I think it's because he's starting to want a bit of back up incase he gets confused at the till.
He came back with shopping as mother and my sister arrived. He was on his best behaviour with smiles and laughing (another shock, because for years it's been very difficult when my mam's been here - the typical mother-in-law kind of thing) and he helped put the shopping away. We had a moment when he was worried about leaving some frozen meat out of the freezer so it could defrost for tea, worrying that it would go off before it was cooked and my sister stepped in and suggested that we put it in the fridge so that it would still be cold but wouldn't go off. Wow. Thanks Sis.
Mam went and took her dog for a walk and it was just us three grown ups with tiddly pops popping in and out through out the afternoon. Middley came in and had a shower and then went a bit over the top with some perfume she'd been given for Christmas, and hubby asked her what she was wearing. She went and got the bottle and then when I said maybe she should use a little less he came in with "well at least you smell nice Middley because your mum doesn't shower, doesn't wear deoderant or any perfume and she's always smelling horrid". That was nice, but we left it and said nothing.
There was another moment when I was stood at the back door and he shouted my name. I asked him what he wanted and he said "too late". So when I shut the door and came into the living room I was "useless. You are such a let down. You've let me down again, I can't rely on you and no, I'm not telling you what I wanted you for because I managed, so I can manage without you, and there's nothing stopping you going down home with your mother". Ok. Another comment left in open air.
My mother came back from the walk and we had a chat and a blether and ate some "broken biscuits" which makes me smile because hubby buys them and the girls love them. All four of them go through the box looking for whole biscuits - they've made it into a bit of a game and the result when they find one is smiles all round. Even when they find ones that daddy was looking for lol.
Mam and sis left, with the offer of coming home with them (bless) and I cracked on with tea. Tea was eaten in silence because he was back to "other hubby" mode and Middley had tears because he had said something, but I didn't catch what it was.
After tea we did the dishes and tidied up from tea, putting table mats away and the condiments and then we sat down to watch The X Factor. It's something that we can all sit around and watch and hubby was on his laptop whilst working out his new business venture, which I'm not allowed to mention to anyone at all, but dear Lord...
I commented that one of the songs on The X Factor made me think of hubby. At the end of the programme he asked me why. The girls had gone to bed, for peace I imagine, and I put the song onto his laptop. It's the Goo Goo Doll's Iris. He asked me why and I said that the line "everything's made to be broken, I just want you to know who I am" hit home with me. Again, why? It just makes me think of you. Tell me why? Hubby, the words just fit what I think of this illness you have. What is broken? Awkward silence... "You are broken, because of the Dementia". He asked me to play it again and he listened to the words and sang along, he never commented on my thoughts but he smiled at me.
We spent the rest of the evening listening to some of his favourite songs. We listened to The Pogues, The Dubliners, a bit of The Proclaimers (and their song "500 miles" to me is my hubby. Everything about that song is him. When he went to Australia he came home 3 months early just to be home with us. It is a song that I love and that makes me smile, but it can also make me cry too. I love it, and it's my hubby - I don't care what anyone else thinks lol). We even listened to a bit of Bagpipe music, don't tell me that didn't give the dog a fright lol. It was lovely and we went to bed together without any arguments or any rants.
This Dementia is an utter rollercoaster, it really is. You never know if you're going to be on a high or a low. Yesterday started off lower than low and ended up on a high. You can flip between one and the other faster than you can blink and you never know what's going to cause the highs or lows, it's an utter mystery but the highs outshine the lows. It's like a magic eraser that rubs out the lows. I don't know how because on the lows you are in despair, but a high comes along and you pretend that everything is "normal", you forget that in ten minutes, twenty minutes, a day, a week, a fortnight that everything could be back down on the ground, scraping along until the next high arrives. It's certainly not for the faint hearted and it's a ride you can't get off, but you grasp at the good times and convieniently "forget" the bad ones.
I have snapped this morning. Not in a loud and argumentative way but in an "enough is enough" way.
I got up to let the dog out. I went back upstairs and was told what an awful liar I am and how I do nothing (again) and how useless I am for not having the back bone to get a job.
I came back downstairs, made him a coffee and got his meds ready and took them upstairs where it continued. I didn't bite back. I simply said that I'm tired of this. He asked if my mother was coming today, and I said I would ring to check, and that if she was that we would be going home with her. Good. Ok, that's sorted. Can you get me the suitcase please (again).
The difference is that when I rang to ask mam if she was coming she said "do you want me to". My answer was "yes". Ok. So mam's coming. I also said that if she did come up that there was a possibility that we would be coming down with her. "Oh." That's the first time I've ever done that. It's the first time I've ever said I want her to come (and I don't mean that in a bad way, I mean it in a way where I need her to come).
Hubby came downstairs and I told her that she's coming. I said that I can't take anymore of this, that I'm exhausted. "Of what?". The brick wall. There is no affection, no conversation, nothing. The only time that he's nice is when there are people to put on a show for. When they're gone so is the niceness. There is no affection, nothing - and I know it's this illness, but it doesn't make it any easier.
He's been up for a bit now and he's coming round to the meds kicking in.
I'm tired of having no money. I can't cut the cloth any more than I have. On Tuesday the cupboards were bare. On Wednesday they were "Dear God, what can I make with this?", on Thursday I was "Christ, please" and yesterday I just gave up. Today the rant from him has been about money.
He asked me how much money I have. That's £9 something or other in my bank, but I can't use it because you need £10 in your account. When do you get more money? That's Monday. What's coming out of it? The car tax, the house insurance, the phone bill, the garage rent, gas, electric and shopping. So what do you need? Anything and everything.
So if I go and do the shopping says he, I'll get my money back on Monday? Yes hubby.
I said to him that I'm tired of this. That all of the money that comes into my account goes on bills and what's left goes on food. His money is his and whilst he does all the things extra (like the kitchen) out of it, it's the extras he does. I'm struggling to make ends meet and pay for things we need, but his money goes on the extras. I never have anything to do anything fun with, but he makes me feel like I'm useless because it's "look at what I've done" with his money. I tried to say that if the car was here rather than here there and everywhere then it wouldn't need this that and the other done on the mot. That the petrol that goes into it isn't covered by doing anything that is needed. That I'm trying to do everything and getting blamed for everything. I said that whilst I know that I have failings, and that I am failing, it's him that tells me I'm a failure. I said that he isn't perfect, but I hope that I don't make him feel the way he makes me feel - a failure.
I feel like a dancing bear that has to beg if I need to ask to borrow money from him. Like he Lords it over me, and I do remember once him getting his wallet out and throwing the money (notes and coins) onto the floor and telling me if I want it, I'd have to pick it up. That was one of the most humiliating experiences I've ever had. I've wanted to ask to borrow some money since Wednesday, but I haven't and I still haven't, but my mam asking if I needed anything brought up and me saying "thank you, but I can't afford to pay you for it" was another humiliating experience.
I know what all of this is about. I know it's because the car needs an mot. I know it's because he got his DVLA letter yesterday saying that it could take six weeks to hear from his Consultant about his fitness to drive, and then the time that it would take them to investigate and the fact that this time schedule will probably mean that his licence will be expired before they've decided, and I know he's worried about money too. I'm still trying to get the mortgage interest thingy sorted, and he just doesn't understand the time it takes to get anywhere with anyone when you're contacting them. I'm also trying to sort out the house insurance with the mortgage company because I've been paying it seperately whilst they've included it in their payments, so yes, money is tight - very tight, and when it does get sorted it means that hopefully we'll have played catch up with the money we should get back, but how far down into the mud do you have to wade before it's sorted?
My husband is getting worse. Yesterday he asked Biggey if she got a different bus to Middley because she was home faster. The reason she was home faster? I had taken her to the hospital to get her wrist checked over. He simply couldn't remember this thing that he knew I needed the car for all week.
So today I just said that if I'm making him as sad as I feel, and if I'm disappointing him as much as he says I am, and if I'm making him feel the way he's making me feel, then maybe it would be better if I went home with mam. It's never going to happen and I wouldn't leave him, but as I told him, I love him to bits, and always have, but I don't have to like him, and that is awful isn't it?
Ok. So you all know that my husband has Dementia. I know, I barely mention it anywhere (PFFT). Dementia is a mental illness, which makes my husband a mental patient which makes my girls the children of a mental patient, but I can catagorically assure you that we have never found him rattling around the house, or anywhere else for that matter, in a blood soaked straight jacket whilst weilding an axe.
We love Halloween here, so don't acuse me of being the fun police, but finding Asda, Amazon and Tesco selling "Mental Patient" costumes really drew me like a red rag to a bull (Asda have since pulled the said costume and have issued an apology and are donating a sizeable contribution to a mental health charity). We've been in waiting rooms with many other "mental patients" and again, neither of us have clocked any "Crimewatch" suspects, and yes there might be a possibility that if hubby had seen one, he'd forget, but I and the many staff that work in these hospitals (note to people - they're no longer called institutions), would remember.
The furore on Twitter last night interested me. There were many there saying the same thing as I had. I had my tweets retweeted, and I had retweeted other's, but what got me interested is reading the opposing team's thoughts on the matter. "There's nothing wrong with it", "Get a grip", "Shame on the companies for boughing down to public witch hunts", that kind of thing, and this is what got the old grey matter into overdrive well past sleep time.
It isn't the costume that I was offended at. Not at all. It's the perception that "mental patients" (there it is again) are all loons, that they've just escaped from the padded cell, that they should be in Bedlam (still a word used to mean uproar and confusion), and that they should be feared that offended me, and by titling a costume as such simply allows this misconception to be considered acceptable in the public domain.
There are many charities and individuals who work tiredlessly to try and extinguish these ignorant and crass thoughts. There are many who suffer from illnesses who try to dispell these misconceptions. Nobody laughs at Cancer, it's just wouldn't be accepted, yet illnesses that fall into the mental health category seem fair game, and this is what we're trying to eradacate.
It's the stigma of "mental health" that we all struggle with. It's not the illness, which is bad enough, that is the problem. It's people's reactions to "oh... you've got "such and such" and no, Johnny can't come to play at your house now" kind of comments. It's the misguided assumptions and comments that are the problem. Ignorance should not be tolerated in this day and age. The saying "if you have nothing nice to say, then say nothing at all" would stand us all in good stead. Also "don't judge a book by it's cover" is another good one.
The furore on Twitter over the past 24 hours isn't a bunch of loonies trying to jump on a band wagon just because they want to. We jumped on the band wagon because we treat our relatives, patients and complete strangers who suffer with this God awful illness with respect, and that is what was missing when these companies sold/sell this costume. If it wasn't for people like us saying "no" to whatever, then people like the "get on with it and stop complaining" would continue with their arrogant, ignorant and unamusing comments - because believe it or not, I only appreciate an insult if it shows intelligence. Non of the insults on Twitter last night showed this, infact they only showed them in poor light with poor taste jumping onto a band wagon so that they could insult, which to me shows ignorance and cowardice.
I sincerely hope that these individuals do not become the 1 in 4 who suffer from a mental illness, or anyone they know for that matter. It's only then that they will feel the stigma of such an illness and come across the ignorance and misguided who make these illnesses far worse than they have to be, and believe it or not, that is bad enough.