Is this how it goes?

Discussion in 'I have a partner with dementia' started by hillyjay, Jun 15, 2019.

  1. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Warning - a bit long
    I recently rang Admiral Nurses at the MHU to ask for some advice on changes which have been happening with my husband. He’s been on Memantine for 3-4 years now and Rivastigmine since 2014. The phone call got me into a mess which I posted about on another thread. So I wonder if anybody here can reassure me?

    OH still isn’t too bad and we have some days where he’s almost as he was. Over the last year or so though he fails to grasp things so easily.
    He will often tell another person a story of an event from the past but confuse when it happened, the place, who was present etc. He will often mix up details from two separate events.

    He gets angry and takes offence quickly. I can’t predict when or over what.
    An example:The other day I was in the kitchen weighing something out on my analogue scales. He hovered beside me. (He’s good at ‘hovering’, will say,’ I don’t want to disturb you’ - drives me crazy!). He watched the dial carefully on the scales and I told him that the weight will read differently from his angle to where I’m standing. He suddenly snapped, ‘that’s not right!’. I repeated that it was good from where I was standing but it will read differently for him. He snapped,’you’ve got it wrong!’ Again I explained. ‘Can’t you see you’ve got it all wrong!?’ I told him it would be ok. He yelled, ‘ok, make a mess of it then!’ and stalked out of the kitchen. I should add that he was always a calm, thoughtful gentle person till he began to change.

    We often have scenarios like this but I never know when he’s going to erupt. He’s sometimes lost it when we’ve been out shopping and he’s been known to shout at me ’do you think I’m effing stupid!!, Do you?!’ over some trivial thing such as the bus timetable or if I’ve not been able to see something he’s pointing out to me.

    This last winter I discovered he can no longer work out the (very basic ) temperature dial on the central heating. Can’t work out that if he turns it up the house will get hotter. Each time, I have to tell him what to do. Recently we went on a trip for a few days. The hotel room was hot when we arrived and so he proceeded to turn the A/C dial up to 25C asking if that would make it cooler.

    Sorry to go on, but I wonder if this is par for the course and that this means that his meds are no longer having much effect? Do other people notice these sorts of changes? He last had a checkup back in 2016 when the neurologist suspected FTL but after a SPECT scan it was decided that this was not the case.
     
  2. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,683
    Nottinghamshire
    All these changes are typical with dementia @hillyjay.

    I noticed similar in my dad. At one stage I would frequently get to his house to find the heating on full blast and all the doors and windows open because he couldn’t work out how to turn the thermostat to an appropriate temperature. I would also find him on other days sitting in the cold because he’d turned the heating right down.

    He would also get quite cross with himself for being unable to do things he knew he used to be able to and used to call himself names. Sometimes he’d blame his granddaughter..:eek:

    My dad had been a very capable, clever and technically minded man so it came a quite a shock to realise that he could no longer cope with the simplest tasks. Eventually even switching on the TV was beyond him.

    Medication may slow down the decline but it won’t stop it.
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,544
    Female
    London
  4. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Oops, sorry Beate, I didn’t make myself clear - it was my OH who shouted that I’d got it all wrong:rolleyes:
     
  5. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    363
    This is one of the hardest things I’m finding it hard to adjust too @Beate knowing that they are wrong and you are right, but just accepting that this is now the new normal and you’re wasting your time arguing with them. I’m getting better at it. But it can be really frustrating!! I’ve found myself having the argument I would’ve had in the past in my head now. Venting to somebody else or on here has certainly started to help me. Finding acceptance is hard, but it is the new reality and it just makes everyone happier not to argue
     
  6. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    Hello Hillyjay,
    My OH was diagnosed with Alzheimer's in January 17 and has been on Memantine since. I was told by the consultant that he was Moderate to severe. At first it certainly gave clarity of mind but I would say for the past year there have been significant changes. Sometimes it's difficult to notice them as changes, especially when you're with them all the time but in the last six months he has been very changeable in mood. One minute he seems fine but can then be triggered and instantly the red mist comes down and he gets impatient but on the defence. There has been an increase in wondering around the house (I have the doors to outside looked at all times) and moving things around. In the past two months he can be triggered without warning and has become violent physically and verbally..
    To be fair he has had three infections this year, so far which has made the outbursts a lot worse. It's a bit like treading on egg shell. The only thing that works when he blows is to separate from him and not try to reason or discuss. I often just agree with what he says. I have not had any problems out and about yet but think it's only a matter of time.
    Despite the infections, I think there is a definite increase in the symptoms and I would say that he is well into Stage 6 of the descriptors and had my first experience of him misreading the need to open his bowels with him thinking it was just a pee. It took me two hours to clean him up and the mess. which was everywhere. I suppose this is something I shall have to get used to! Best of luck! x
     
  7. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    140
    Male
    South Northwest
    On the inside of my eyelids I have tattooed 'Mum is always right!" This was true when I was a kid, when she usually was right, and it's especially true now that she's usually very wrong indeed about everything.

    Mum needs to be right for her own sanity. So I try to have the automatic reaction of "Thank you, I'm such an idiot sometimes. Where would I be without you?" to everything. It takes practice, but eventually I began to sound pretty convincing. Then, having appeased her, I have to find a distraction for Mum so I can get back to doing things the way they have to be done.

    Of course that's how it should be ideally. I'm not saying I always remember, despite that notional tattoo. Dementia is hard on everyone involved, but as carers we're the only ones capable of change so we have to change our behaviour. Our job is to make the PWD comfortable in a world that makes less sense to them every day. We can't afford the luxury of being right... we have to learn how to be wrong in the right way. :)

    Or something like that. By the time this journey's over for Mum and I, the only thing I'll be qualified to do is write third rate fortune cookies!
     
  8. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,341
    Female
    I think Beate meant that when you were trying to explain about the scales, you were correcting him and effectively telling him he was wrong. So a better tactic would be agree with him that he is right ("oh yes, silly me") or you could try turning the scales so he could actually see what you meant. The reason he stormed off was because he didn't understand your explanation and felt foolish and frustrated. You were explaining a simple thing but he can no longer comprehend it. And similarly, when he's pointing something out and you can't see it - just agree and move on. You can't argue with dementia.
     
  9. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Hi MoodyC, You hit the nail on the head when you spoke of the red mist descending when he’s been fine a moment before and feeling as if you’re treading on eggshells. Fortunately my Oh isn’t near the wandering stage and I can leave him alone without problem.

    Several of you have mentioned agreeing regardless. Anyone have the problem where they must NOT answer a question with ‘yes, we can do’ or ‘no, I’d prefer not’ or something like that? Sometimes that’s fine and normal and he is happy with it and at other times, OH will suddenly yell at me demanding I give him a straight answer, YES or NO!

    Oh dear, I’m sounding a bit petty with all this compared to what so many of you are dealing with. It’s the sheer unpredictability of it all that gets me, how he can be fine for a few days then suddenly have a very bad phase with no warning till the anger (only verbal abuse) begins again. It’s also so sad seeing him struggle (sometimes) with basic maths when he used to teach that once.

    I had just wanted to know if these things I’ve described are a sign that yes, the tablets are ceasing to be effective. I wish I’d contacted you here first rather than trusted the ‘support’ of our local MHU.
     
  10. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Rach, I’m doing my best to learn not to argue and I often find myself talking to myself as soon s I’m on my own -ventIng as you say. Oh for the days of a good old discussion.....
     
  11. canary

    canary Registered User

    Feb 25, 2014
    9,653
    Female
    South coast
    It doesnt necessarily mean that the tablets are no longer effective - it just means that everything is progressing, although slower than without the tablets.
    The tablets dont halt the progression, it just makes everything progress slower. People who stop the tablets often find that there is a sudden deterioration.

    When you talk to to him, he is having problems processing what you say, so keep sentences simple and concise.

    No-one has mentioned:
    This is called confabulation. It is the unconscious product of a brain trying to make sense of memory deficits. The brain is trying to "fill in the gaps" and produces a sort of false memory that looks to the person like real memory. So, your husband thinks that that the stories he tells are perfectly true. Dont try and correct him.

    Logic and reasoning are no longer your friend - the ability to follow logical thought has been lost, and Im not sure that he is following what you say anyway.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    9,653
    Female
    South coast
    Oh yes, I know about this, I too wish for an old fashioned discussion, but OH can follow my thought anymore and I get accused of telling him what to think or arguing with him. There is a lot of silence in my house.
    You can always vent on here - it is one of the things that the site can be used for.
     
  13. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    One thing I’ve now learnt to do, when he sees place on a Tv programme (somewhere in the U.K.) and says, ‘we’ve been there, haven’t we?’ I now mumble something about ‘did we, must have been a while ago...’ and hope I get away with it!
     
  14. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Sorry, yet another question. Don’t know if I should start a new thread or continue with this one.

    The Mental Health Nurse is apparently going to phone me tomorrow now that they’ve had a meeting with the consultant et al to discuss meds. My husband is already on Memantine and since there is no other drug currently in use she is going to discuss with me the possibility of him being prescribed a ‘sedative/calming drug’ because of his anger outbursts.

    Personally I don’t feel this is necessary, these outbursts don’t happen every day. I’d welcome any thoughts on this, please. He does become agitated about things and focused on one thing only but even so,......??
     
  15. canary

    canary Registered User

    Feb 25, 2014
    9,653
    Female
    South coast
    There are several different things that doctors can prescribe.
    Sometimes an anti-depressant can help with anxiety
    Sometimes it needs a low dose of an antipsychotic
    And sometimes a sedative to be given "as and when" can help.

    See what the doctor says.
     
  16. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,564
    Yorkshire
    Hi @hillyjay
    I took the line that anything that helped my dad remain as calm and settled as possible was to his benefit .. it was not good for him when he was agitated and at times he would spiral quite dramatically which was awful for him .. I am not suggesting I wanted him sedated, simply able to function calmly .. so I agree, see what is suggested and give it a try
     
  17. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    This is a quick response as I am on borrowed time! But because OH became unsafe and made me feel that way too I sought support from the Mental Health team who came out straight away and checked him over for any physical problems. He had a UTI. I explained about the high anxiety linked with toileting and going to the bathroom that they prescribed Lorazepam. This does help but makes him unsteady on his feet and sleepy. They said I wasn't to use it everyday - however tempting..... But giving half a tablet works well in that it calms and makes him more compliant.
     
  18. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Thanks for the quick replies. To me, the idea of meds to calm him were suggestive of sedating him permanently!

    Moody, thanks for popping in quickly. If I’ve understood correctly you give him half a tablet when you see he’s getting stressed or agitated? How easy is that to do? My OH would query anything else I wanted him to take.

    Shedrech, I’m struck by your words that anything which helps calm him and remain more settled is a benefit. Something I’ll try to remember depending on what the MHU nurse says tomorrow.
     
  19. MoodyC

    MoodyC Registered User

    Sep 22, 2018
    31
    Hello again, Hilly, I know what you mean about questioning, especially where medication is concerned. We have now begun a new one for diabetes so there's a lot of humouring going on.
    But I often say that it's our diabetic nurse who would like him to try these new pills. Nothing to do with me!
    Luckily for me, he was on antibiotics for the UTI so I said they were part of the treatment. Yes, I only give him a half when I am aware that the pacing/wandering is increasing and also the anxiety linked to the toilet. So far I have managed to include in the tea time medication regime - just discreetly adding it to the others. As the dementia team says, giving just half means that you can give the other half should things get worse, if possible. It's a fine balancing act to try and get it right before frustration has gone too far.

    Trouble is, we know that it's all hit and miss and just trying to keep everything calm and biting your tongue when all you want to do is scream!
     
  20. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    How long does your husband’s take to work, Moody? Mine can still manage his own meds although I keep a discreet check on if he’s taken them. Earlier in the year he had to begin taking tablets for angina and he was ok about those so I think, if it is decided he should have something to lessen anxiety, that the old ‘The doctor says..’ tactic might work.

    I do get fed up with having to be so sneaky and devious!
     

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