AD progression or psychological response

Discussion in 'Younger people with dementia and their carers' started by The Dementia Wife, Jul 10, 2018 at 1:56 AM.

  1. The Dementia Wife

    The Dementia Wife Registered User

    Apr 22, 2018
    Hi everyone,
    I have a question for you all. My husband’s diagnosis was finally confirmed 3 months ago (just after his 55th birthday), although it took a good 9 months to get diagnosed. He has been symptomatic for 4-5 years and our consultant has told us he could well have had the disease for anywhere up to 20 years before the first symptoms became noticeable.
    He is still independent although recently had his driving licence revoked by the DVLA due to an administrative error (I am appealing on his behalf). He is forgetful, loses keys/phones/wallets all the time, struggles with instructions, or processing new information. Recently I have noticed he sometimes struggles to tell the time on his analogue watch, as he sees the hands being in totally different positions to where they actually are pointing. He also gets very easily frustrated. He has always had a relatively short fuse, but he recently has been angering over nothing in record time. It’s like he is bypassing some kind of filter. When he is having a paddy, he gets really nasty and verbally abusive (at me and my teenager-not to the little one) and it’s starting to get to the point where I don’t know if he is declining quite quickly or if it’s a psychological response to his diagnosis. If he’s not smashing plates, he’s the other extreme of total inertia and depression, not leaving the house at all. The Jeremy Kyle show seems to be the only thing that puts a smile on his face.
    He’s been on full dose donepezil for 2 months now but his symptoms are getting worse, not plateauing as I hoped. Doctors haven’t replied to my emails asking for advice or guidance...I suspect we’ll have to wait until end of August when our follow up appt is due.
    Can anyone give me some clues as to what they think or advice on how best to handle this new, not-so nice side to my husband? Thanks TP xxx
  2. Philbo

    Philbo Registered User

    Feb 28, 2017
    Hi Dementia Wife

    My wife was diagnosed with Fronto Temporal Dementia (FTD) in January 2014, not long after her 63rd birthday. We had initially gone to our GP about a year prior to this, although I had been trying to get her to go long before.

    I guess it all started with her keeping repeating herself, which I had noticed and even mentioned to our GP but he was a bit dismissive, putting it down to stress, getting older etc. But I also noticed that she was not washing her hair, changing underwear etc. She would get quite stroppy if I mentioned it to her and she became generally very sullen, which was out of character.

    Even before the diagnosis, she had stopped going out on her own, didn't seem to be able to handle money etc and her speech was being affected. She stopped driving after our son happened upon her stopped in the middle of a mini-roundabout near his home. She must have stalled it and didn't seem to remember how to restart the car! This was the final prompt that I needed to get my head out of the sand and get her to the GP again.

    After an initial visit by an outreach guy from the memory clinic, we had her first appointment with the consultant who said the she thought it likely to be dementia, followed by MRI and SPECT scans and a final diagnosis of FTD.

    My wife seemed to deteriorate quite quickly at first and seemed quite tormented and a bit paranoid, hearing noises, seeing flashing lights etc. It was as if she was somehow trying to reconcile what was going on in her head? I found it very difficult to come to terms with what was happening, fearful of what was to come.

    It's a job to remember timescales but I think it took a few months before she seemed to loose some of the angst and torment, eventually ending up, thankfully, in her own little happy world. Ironic, as she has always been a worrier and suffered from panic attacks and depression for much of our marriage.

    Like others have posted on TP, I have found it easier to accommodate any strange behaviours rather than challenge them - that's not to say I don't sometimes flip when she does something exasperating!

    She did plateau for a while but I have seen more of a decline in recent months. It is starting to affect her posture and mobility more now, though I think that this may be a combination of the dementia and a long-standing back problem.

    Although she was discharged from the memory clinic after 2 years, I am able to ring them up for advice if there are any major changes or concerns - not sure if you've tried this. Mostly though, it's been a case of seeking out help from a myriad of local carer support organisations locally. Hear in Kent, we have a charitable organisation called Crossroads Care, who have been a great help.

    If you have any other questions, don't be afraid to ask.

    Best wishes.
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    I hope your husband settles soon. I know how awful it is having to deal with verbal aggression especially when it's directed at ones of your children too.
    My dad picked on one of my daughters while he was on the higher dose of Donepezil, although he toterates 5mg well. If you think the increase in aggression started at about the same time as the increased dose it is worth phoning the doctor and asking for an urgent appointment.

    It may be nothing to do with the drug but it's worth considering that any change in medication can lead to a change in behaviour - good or bad.
  4. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hi @The Dementia Wife
    The things that you describe are typical of frontal lobe problems, so it sounds like the dementia has started there
    Yes, that is exactly what is happening. The frontal lobes contain filters that stop us acting on impulses and when there is damage to this part of the brain the filters stop working. If they are angry, it cannot be checked; if they are thinking nasty thoughts, they get said; if they want to do something, they do it - whether its a good idea or not.

    Apathy is also a symptom of frontal lobe problems. Unless they get a compulsion to do something, they cant work out what to do and dont care anyway, so they do nothing. So yes, they alternate between putting a lot of energy into doing things that they want to do (and they can be extremely devious about doing things that they know you wont approve of) and doing nothing. They often lose empathy too, so they are unable to see anything from anyone elses viewpoint. They want what they want and they want it NOW!!! If they dont want it, they dont care that you do and you cant make them do it.

    Donepezil can often increase aggression (especially with frontal lobe problems), so this might be exacerbating the symptoms. I would bet back to the doctor who prescribed it.

    Do you really think it is a good idea to appeal on his behalf? From what you have said Im not sure that he would be safe driving. I would let him do his own appeal and if he cant manage it I would think that he definitely shouldnt be driving.

    I will pass on a small tip to cope with the rages. Often saying "no" is like a red rag to a bull, so if you have to say no, use a different way of saying it. Start the sentence with "yes" and then say what you need to say.
    "yes - perhaps we could do it next week"
    "yes, the doctor says you cant do that"
    "yes, Im going to be doing xxxx" (which he doesnt want you to do)

    Get the idea? It seems odd to start with and isnt easy to do - especially on the hoof, but does help a lot.

    If you want him to do something give him a good reason why he would want it done and try and make it his idea too.
    When I wanted a call guarding system on our phone because OH was getting scammed, I spent some time complaining about the number of cold callers we were getting and how they were such a waste of our time. I left adverts for this sort of system around and suddenly OH decided that this was exactly what we needed and ordered one. ;):D:cool:
  5. The Dementia Wife

    The Dementia Wife Registered User

    Apr 22, 2018
    Thank-you @canary. This makes a lot of sense. The problem is not that I say "no" to him, it's the fact that he gets his knickers in a twist over nothing at all, and then flies off the handle. we've had a few bad weeks. He was asked to go to the horse racing during Royal Ascot week with a mate. They had planned to go to the tennis the following day so I didn't think it would be a late one for the racing. I was (for once) enjoying having an evening alone with my kids, when the doorbell went. My OH who was covered in blood, was accompanied by a paramedic. He must have had a fair amount to drink, but he was conversationally coherent, so neither the paramedic or me could work out if he'd got himself into a state because of the booze or a state of genuine confusion. Police found him on the floor having run into an open car door. He lacerated his eye socket, grazed his face, broke a tooth....Anyway, as soon as the paramedic left, he started getting really verbally abusive towards me and chucking stuff on the floor. My 16 year old starting getting nervous as whenever this happens, he feels like he should be protecting me. A few days later, he's telling my 16 year old to "f off" (over literally nothing) and then starts smashing plates later when I explain that it's not ok for the children to see and hear this behaviour....
    On our way to the solicitors, we got stuck in traffic so I said to him that I would drop him off on the corner so he could run in and get things started while I parked the car, so we wouldn't be too late. He said nothing. Again, when we got to the corner of where the solicitors is, I explained the same thing. No reaction. By this time, I have a queue of people beeping me so I tell him to get out and meet me there while I park the car. He literally got out and slammed the door so hard, the car shook. By the time I parked and ran to the solicitors expecting him to be there, he hadn't even arrived. Tried calling him, phone was switched off. When he eventually turned up, he was swearing at me like a banshee in front of the solicitors, for having been so rude to him in the car and telling him solely to "get out". He wouldn't accept my version of events at all, saying he didn't hear anything other than "get out" and had a right old ding dong. Again.
    Re the driving licence thing...the consultant said she thought he was safe for the next 12 months (despite me voicing my concerns), so instead of getting the doctor's feedback, they automatically revoked the licence because I ticked a specific box that asked if he ever experienced memory loss and/or confusion....He literally threw the letter at me (from the DVLA saying had to stop driving immediately) and started swearing at me.
    Does this sound like frontal lobe dementia? I have cited examples to the doctor by email but she hasn't replied. I'm conscious of the fact that she probably feels I am a total drain on her time, but just need to know what I am dealing with so that I can temper and measure my reaction to his behaviour. Thanks for your input Canary. Really helps knowing you are all
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Oh wow, you are having a tough time.

    I recognise the thing about him getting out of the car - its a language/comprehension problem. He cant process that amount of information and only remembers the first bit,
    Recently our daughter came to stay for the weekend. She was originally planning to come on the Friday, but I went out shopping that morning and when I got back OH told me that she had phoned to say that she wasnt coming. I was therefore very surprised when she arrived the following morning. She said that she had phoned to say that she couldnt come that day but would be coming the following day. But OH only heard the first bit.

    OH also misinterprets queries and my confusion about what he is talking about as me trying take him over and telling him what to do and/or think. The feeling of being in control is very important to OH. I think he knows that he is losing control (although he doesnt quite understand what is happening) and feels that it is me that is taking the control away. He also knows deep down that he needs me (although he still thinks he can do everything himself). It must be very confusing for him. It reminds me of a small child stamping their feet and going "let me do it!" when actually they cant.
  7. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    #7 Sarahdun, Jul 13, 2018 at 6:53 PM
    Last edited: Jul 13, 2018 at 6:59 PM
    Wow / I recognise so much here - and there is lots of good advice.

    Like others I doubt he is fit to drive.

    In my husband’s case the anger was terrifying at times - and health practitioners did step in quickly when they recognised that. They changed his medication which helped, including adding a mild tranquilliser at night to encourage sleep. Other things helped too. Paying for a little bit of care so that we had a bit of a break from each other. After some months his dementia had progressed to the point that he know longer understood he had it. He then became MUCH happier (though of course also needing more care). He is now very happy and no longer angry at all . I believe this is quite a common experience. So sorry. The whole thing is quite horrible and very lonely. Do join a group if you can or vent on here.

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