The Rollercoaster just won't stop.

03/11/2013 12:21

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)


Search site

Photo used under Creative Commons from VinothChandar © 2013 All rights reserved.