1. Kaycee80s

    Kaycee80s New member

    Apr 6, 2019
    3
    My dad has not been himself for probably a couple of years now. It was very gradual, so it took some time before we were able really realise the changes and on a good day you can think there's not much wrong apart from being a bit slower. He has always been prone to nodding off easily but this started to increase, even within a minute of him sitting down, he'd be off with his mouth hanging open.

    He started to seem a little more vacant, and have more off moments staring off and not seeming very with it. He reported some light-headedness and fatigue and it was put down to getting older etc. (He's 71).

    Eventually he was persuaded to go to the doctor as he'd started to seem absent minded. He had bloods and urine tested and was found to have low B12, folate and low BP which he was on meds for high BP. Dr stopped the BP meds immediately and got him sorted with B12 and folate supplements which gave a marked improvement so we all sighed a sigh of relief. His BP and levels were 'fixed' it seemed though he was still not the same as before but we thought initially he just needed time to recover.

    Fast forward to recent months, his initial improvement went back to square one, however he's been retested and his B12 and folate are fine which was a disappointment as we'd hoped it could be a fixable thing, but his BP had gone very low again, so he's been taken off another prostate med this week which can sometimes have low BP as a side-effect. I've also read about links between prostate meds and dementia and the possibility it may unmask it sooner.

    He had a brain scan and was shown to have some small vessel disease but the doctor said it was very common in people his age and didn't necessarily mean anything. He also got tested at a memory clinic and has scored 70/100 on the ACE III test, for which I believe a score below 80 is indicative of dementia so we were quite disappointed about that.

    He's vary variable, some days appears ok, other days he's got low level confusion, e.g. I'm currently buying my first house and he was telling me to make sure I got paid etc... I remind him I'm not selling, I'm only buying and he says oh yes, got confused.

    I ask him if he pays for their water monthly, he isn't sure, then starts saying the water at their old house they still have is in my name so I should not forget to change it, so again I gently remind him it's never been in my name, and that he's holding the bill which is in his name and he says, oh oh yes and seems to remember.

    When he wakes up from his dozes, he can appear disorientated. My mum has also reported that at night when he gets up for the loo, she's found him standing in the other bedrooms looking confused about where he is and she's directed him back to bed. Another time laying in bed he said something to my mum about a drink and she offered him her bottle of water, but he said, no I thought you were making a drink? So this left my mum quite confused as it was so random.

    It's like he's aged too quickly in comparison to my mum who is the same age. His gait has changed, he doesn't lift his feet as much as he should and he stoops a bit too. When he falls asleep with his mouth open he drools on himself. It's very hard to watch especially as I think my mum struggles to be patient with him where his reactions and processing has slowed significantly. He told me he struggles a bit now with knowing the day/date and wanted to change his watch to a digital watch which has all of this information on it.

    My mum reports things like him helping her change the bedding and he will apparently stand there, holding the duvet cover or whatever and seem to not really know what to do next without a prompt or reminder.

    Other times he can recall things in great detail that we don't remember or expect him to. He's still cracking lots of jokes as normal, but his connections in conversations have become more abstract, yet the connection is still there so not like he's just saying something random.

    I just don't know what else it could be. He has an appointment with the consultant as a result of his memory test and we are bracing ourselves for some sort of dementia diagnosis, but I've been confused by all the different types. My mum's mother had alzheimers and some of his behaviour has reminded me of it even though I was little it was a big part of my childhood and I almost expected it with my mum due to genetics etc, but it has really knocked me sideways that my dad appears to have started this. He's outlived his immediate family, his sister and mother from smoking related illnesses in their early 60's (he doesn't smoke and never has) and his father had an aneurysm in the night in his late 40's. I think one of his grandparents possibly had dementia, but his immediate family passed away before something like that was likely to have started.

    We've stopped him driving. Sometimes he's for that, other times he doesn't seem to realise why he's a risk at the moment.

    Meds he takes: Doc recently put him on aspirin but noticed no changes from this, Tamsulosin & Dutasteride (I think it's the Tamsulosin he's stopping), Tropsium Chloride and laxatives.

    Does anyone have any wisdom or insight. I'm feeling like I'll end up needing to talk to someone as it's breaking my heart to see the start of this. I've been through it with my grandmother and hoped I'd never have to experience it again.
     
  2. Lawson58

    Lawson58 Registered User

    Firstly, welcome to Talking Point. I am pleased that you found us.

    When I think back to the years prior to his diagnosis, it is obvious to me now how long and how slowly my husband declined. I can pinpoint odd things from as long ago as 10 years before he was diagnosed. I now know were early indications of what was to come. He was diagnosed with Alzheimer's almost five years ago.

    Initially, it was said that he had 'atypical' Alzheimer's then it was fronto-variant Alzheimer's, then non-amnesiac and now it is non classical. So even a diagnosis can be confusing but certainly much of what you describe about your dad should be ringing alarm bells for his doctor.

    Vitamin B12 deficiency is well known for being responsible for confusion. My husband's geriatrician put my husband on to Vitamin B12 at the time of his diagnosis and thinks it is helpful so he has continued to take it.

    No two people with dementia progress or behave in the same way and it can be a long and difficult road that we as carers have to travel. I hope that you have a helpful consultation with the doctor and that you get the help you need.

    I am sure someone will be along soon to point you in the direction of fact sheets, helpline and lots of other useful information. Talking Point can be a very helpful source so stay in touch and let us know how you get on.
     
  3. Kaycee80s

    Kaycee80s New member

    Apr 6, 2019
    3
    Thank you so much for your reply, it is such an unsettling time and any words of advice and empathy are appreciated.

    I think after everything I've been seeing regarding B12 I feel it may be helpful for him to have a maintenance dose maybe. I would also like to get him more active. If left to his own devices he would just sit in his chair with the tv on and not move for hours on end.

    Looking back as some photos this week, I can see the start of the slightly less switched on look in photos even in 2015 which ties in with other signs where something was perhaps creeping in without us realising.

    He has his appointment on Friday so I guess that might be the day we find out. I'll be at work so hopefully my mum will message me with an update.
     
  4. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,341
    Female
    I can understand how you feel. My grandmother had dementia but was not too badly impacted by it until the last year of her life, and only needed professional care for the last six months. A few years after she died, my mother was diagnosed with dementia aged 79, and she's now 84 and in a care home.
    As Lawson has said, and you've found, diagnosis isn't always straightforward but hopefully you will get some answers on Friday.
     
  5. Kaycee80s

    Kaycee80s New member

    Apr 6, 2019
    3
    Update - my dad is still fairly similar to before, up and down and still not seeming to have any realisation of how he's not quite himself. Still falling asleep all the time, like micro-sleeps. He's just had a DAT scan as the consulatant has suggested Lewy Body Dementia. It's very hard as he's most upset about not being able to drive. Just waiting now to get an update from the scan report and appointment with the consultant. It's had a real impact on my mood, I feel quite tearful a lot of the time as I feel like my heart is breaking with all this, as we have to pretend everything is ok for his sake. He doesn't seem to understand it's dementia being looked at and none of us has had the strength to say the 'D' word to him. Now we have to wait...
     
  6. lis66

    lis66 Registered User

    Aug 7, 2015
    226
    Kaycee80s ((( hugs))) to you you experience many emotions on this long slow heartbreaking journey with dementia my mother has had AD for six years and watching the progression ,it's a living grief ,you will find lots of support on here xxx
     
  7. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    843
    Female
    Dorset
    If it is Lewy Body you can always say it is Lewy Body Disease when talking to your Dad, then it doesn’t sound quite so bad. That was the phrase I used with The Banjoman when talking about what the Dr. had said or why he was having difficulty in doing things. It seems to be interchangeable Disease/Dementia in reports etc. so I go for the less menacing one.
     

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