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  1. #1
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    My partner was 62 and diagnosed with Dementia/Alzheimers

    Hi everyone I'm a newbe here, I've been reading your stories for weeks, I've plucked up the courage to tell my story as it is so far.

    I've been with my partner for 8yrs now, he's now 64 and I'm 53. We're very close but he's not a very affectionate man but warms my heart with his constant banter when I met him. I'm a talker and love to talk and listen to his story's when I met him he made me laugh and feel good with his happy go lucky don't give a dam attitude ☺
    We have a love for gardening and the outdoors and days away camping etc.... well that's when I first really took notice that his ramblings were becoming muddled, repeating sentences over and over. That was just about 3 years ago. We were away in our van camping in the west of Ireland (I'm from Northern Ireland btw) we had laid down to sleep and he said " hey P, (that's what he called me, never my full name just P) did we drive down through the Midlands (middle of ireland) I says no we came via Sligo & Galway along the coast, he was so confused at the time, I just brushed it off, but he kept asking me it as if I was wrong, then it was repeating the same question over and over, I lost it and said some nasty things as my patience wore thin and I believed he was winding me up.
    Fast forward:
    After a year of just forgetting stuff I became concerned, got an appointment and the doctor done a memory test, the doctor noticed his memory wasn't so great and referred him to the memory clinic, we went there and done much the same thing plus a hundred questions lol, referred for a MRI, results were Early onset Alzheimers! 😥
    He didn't seem to take it in, he just rambled on about his dad having hardened arteries, telling his story. We left there and I explained that he was lucky his dad didn't have the medication he has, and that we would take it one day at a time, which fortunately is how he's doing it, he never mentions it only if he's speaking off his dad, he was prescribed 5mg donezipil to take for a month then was increased to 10mg, a month later he was prescribed 15mg ... the consultant said he would try him on a higher dose to see if it helps slow progression I think as a trial because he was young. He's still on that dose 2 years later, it seems to be working as his last memory test was the same, although i see changes in his memory daily.
    So atm were still at early stages with mainly memory loss, and delusions on one occasion throughout the night. I've found the information and experiences you've all had invaluable. I've a long stretch ahead and getting prepared as best I can 💙

  2. #2
    Registered User Nameless's Avatar
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    Hello Polly, I'm sorry to hear about your OH diagnose. There's a worldwide trial for a stage 3 medication going on, where people with early stage AD can try to qualify. You might want to google Aducanumab. My husband is in it.

  3. #3
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    Hi Polly

    Welcome to the forum and thanks for sharing your story.

    It is indeed a lot to deal with for both of you and the folk on here have a lot of experience and can offer support in the bucket load.

    My wife and I are both 66 and she has Fronto Temporal Dementia (FTD), diagnosed in Jan 2014, after about a year of visits to our GP, memory clinic,scans etc. Looking back, I can see signs as long ago as 2010, though at the time, I dismissed these as "senior moments", forgetfulness etc.

    She was always a chatty person but as the dementia has progressed, it has affected her cognitive abilities and her speech. So whereas we used to consult each other about everything, she has withdrawn into her own little world more. Perversely, she will talk more to the TV, as she thinks people on there are talking to her.

    I am very lucky that she always seems happy (probably more so than she's ever been). But I do feel very lonely at times, no longer having a soul mate to lean on.

    Best wishes
    Phil

  4. #4
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    Quote Originally Posted by Nameless View Post
    Hello Polly, I'm sorry to hear about your OH diagnose. There's a worldwide trial for a stage 3 medication going on, where people with early stage AD can try to qualify. You might want to google Aducanumab. My husband is in it.
    I enquired about this for mine, but was unfortunately told they are no longer recruiting people with early AD, but only taking those who are in the undiagosed prodromal stage now.

  5. #5
    Registered User Nameless's Avatar
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    I guess the trials are at a different stage in each country. Here they are still recruiting where my OH goes and starting up two new Centers.

  6. #6
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    Quote Originally Posted by Nameless View Post
    Hello Polly, I'm sorry to hear about your OH diagnose. There's a worldwide trial for a stage 3 medication going on, where people with early stage AD can try to qualify. You might want to google Aducanumab. My husband is in it.
    Hi nameless, thank you for your reply, I will indeed Google that for more info thank you very much 😊

  7. #7
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    Quote Originally Posted by Philbo View Post
    Hi Polly

    Welcome to the forum and thanks for sharing your story.

    It is indeed a lot to deal with for both of you and the folk on here have a lot of experience and can offer support in the bucket load.

    My wife and I are both 66 and she has Fronto Temporal Dementia (FTD), diagnosed in Jan 2014, after about a year of visits to our GP, memory clinic,scans etc. Looking back, I can see signs as long ago as 2010, though at the time, I dismissed these as "senior moments", forgetfulness etc.

    She was always a chatty person but as the dementia has progressed, it has affected her cognitive abilities and her speech. So whereas we used to consult each other about everything, she has withdrawn into her own little world more. Perversely, she will talk more to the TV, as she thinks people on there are talking to her.

    I am very lucky that she always seems happy (probably more so than she's ever been). But I do feel very lonely at times, no longer having a soul mate to lean on.

    Best wishes
    Phil
    Hi Phil,
    Many thanks for your reply, I'm saddened to hear your lovely wife has become quieter and your missing out on the conversations, you say she talks to the TV, I've found my bill have become more aggressive when watching anything with violence in it, no matter what it might be, a small struggle to a war movie has him on his feet shouting kill the ******* 🤔 he sits on the edge of the seat breathing heavily as if he's gonna get up and strike the TV any moment, I say to him to settle down or I'll turn it over, this usually works I'm just hoping it doesn't escalate any further. It's hard not easy at all sometimes 😶

  8. #8
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    I think he misses me when I leave him home alone

    My daughter had her first baby 3 days ago, I decided to go visit with my younger daughter and grandchildren today. Bill didn't wanna go so I left him in the shed working on making a window box, something that would have been a doddle to him last summer, it looks like he is muddled, can't seem to work out the basics, so I measured the bits cut them on the saw and left all for him to complete while I was away. I came back to the window box completed, he had started the second one, had cut the long sides, cut the wrong piece for the bottom, had screwed it partly together but all wrong .... sorta hard to explain. I see this as a decline in his thinking, I discussed it with him, found some more wood got organised and we completed the job together, I find he's definitely not able to think the problem out as much now, is this a decline further in this awful illness, I think he's at his best when we do things together and is lost if I'm not there as his guide ... has anyone else experienced this?

  9. #9
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    Woodwork

    Hi Polly,

    My OH has always had a well equipped workshop for woodwork. It is now rusting, disorganised and gathering dust. I leave the door open on good days but OH is uninterested. I too have to supervise/help with any repairs to fences etc. For a couple of years I felt I had to keep him going with woodwork as it seemed to be part of his identity but now it seems such hard work for him and he simply does not remember what he has created so cannot derive any sense of achievement.

    I think this lack of organisational skills is one of the most difficult symptoms of dementia for us as carers and the general public to understand. Left OH to assemble a simple flat pack bookcase once. The result really brought home to me that he could not do this type of thing any more.

    Our workshop, garage and garden shed are a complete mess and muddle. I have the occasional blitz and tip run but it just seems to build up again. But the workshop is a constant reminder of what used to be. Very sad.

  10. #10
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    I totally understand what your saying, Bill was quite a good handyman but I seem to be the handy woman now but using his strength and my imput to get wee jobs done, our shed is a mess too. I leave things down and boom they are gone, hidden away in a drawer or corner until accidentally coming across them. I'm trying to keep him busy but I know it's gonna come to an end with him loosing interest. Did yr hubby just not want to go to the workshop any more, has he forgot it's there? [emoji20]

  11. #11
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    Quote Originally Posted by polly148 View Post
    I totally understand what your saying, Bill was quite a good handyman but I seem to be the handy woman now but using his strength and my imput to get wee jobs done, our shed is a mess too. I leave things down and boom they are gone, hidden away in a drawer or corner until accidentally coming across them. I'm trying to keep him busy but I know it's gonna come to an end with him loosing interest. Did yr hubby just not want to go to the workshop any more, has he forgot it's there? [emoji20]
    Interesting question Polly. Not even sure he recognises the word "workshop". At one time he would spend any available time fiddling about in there. He does not recognise things he has made. We showed him the beautiful house-shaped bookcase he made for our grand-daughter a while ago and he was surprised and pleased to learn he made it. He does not remember the names of tools and cannot find specific tools if I ask him. I am now the protector of the Mackita(sp) drill which I know works (there are numerous others out there as well).Like you, I pitch in when something needs doing but to be honest I am not as careful or precise as OH was and my measuring is rather ad hoc.

    Up until about six months ago I too felt I had to keep him occupied but OH does not seem worried that he sits about so much. Thank goodness he can still start up and use our petrol mower when I suggest it, but I have the feeling it might be the last summer he does this.

  12. #12
    Registered User Nameless's Avatar
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    Same thing with my OH, he used to always be fixing or changing something in the house and garden. Now if there is something to repair I try to do it with him and then usually end up fixing it by myself. He still works 70% in a reduced capacity and enjoys going, but it's getting to be to much and i think he will reduce to just mornings soon. He's often stressed during his noon break.

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