1. Expert Q&A: Dementia Research, Tuesday 26th March, 3-4pm

    At Alzheimer's Society our research program focuses on improving care for people with dementia today and finding a cure for tomorrow.

    Hannah from our Research Team will be answering your questions on all our research efforts on Tuesday 26 March between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Jackimags

    Jackimags Registered User

    Mar 1, 2019
    74
    I think that’s what I miss more than anything- conversation! We used to watch tv news and comment and discuss all sorts but like you we can sit ages with no conversation. I miss passing on information about family etc cos it doesn’t usually register. Selfishly, I feel cheated that I’ve lost my hubby and best friend
     
  2. Lady M

    Lady M Registered User

    Sep 15, 2018
    219
    Female
    Essex
  3. lilypat

    lilypat Registered User

    Mar 1, 2019
    88
    Female
    @Jackimags my thoughts exactly . my dear mum now sadly gone used to always say that's what she loved about us … our chatting ..
     
  4. Jackimags

    Jackimags Registered User

    Mar 1, 2019
    74
    How have you been last couple of days?? Been fairly quiet here thankfully just the usual confusion and getting sorted at bedtime. If OH goes before me then he’ll be up and down stairs a dozen or more times but I really don’t want to go to bed at 7.30!! Memory cafe tomorrow afternoon which we both enjoy x
     
  5. lilypat

    lilypat Registered User

    Mar 1, 2019
    88
    Female
    Hi we are ok ,if a little stressed out with this windy weather. This FTD is so complex no 2 days the same ...I mean how do people cope ..And I know we are very early into this long and distressing journey
    1 day OH sleeps well before and once in bed
    then no sleep before bed but never sitting down talking over tv programme muttering about they don't know what they are saying total rubbish etc ( it was a sewing programme!!! ) but sleeps well in bed .
    .total change around
    sleeping before bed then awake every 2 hours in night.
    Or as before awake figets hardly sitting down talking over tv programme muttering but sleeps so sound in bed and it's hard to get him up in morning..
    Hate to mention anything we are doing tomorrow or at end of week ..as he keeps going on and on about it ...
    And don't lett the word Brexit get even whispered!!!
    And money well that's another ball game counting counting all his £1 coins ....take them away people say BUT that's worse he mutters about not having any ..and at least I can distract him after 5 mins
     
  6. Jackimags

    Jackimags Registered User

    Mar 1, 2019
    74
    You said it - BREXIT!! No wonder I don’t understand it all with the constant muttering at my side!! Our tv viewing becomes more and more limited to things like blue planet, countryfile, etc. Can’t watch anything with a storyline or a plot. When the speech therapist came she suggested having a sheet of paper with times of things happening on the day. Can’t poss do that cos if there is something at 2pm we would have coat and shoes on at 10am. I tell him 15 mins before anything we are due to do. X
     
  7. Jackimags

    Jackimags Registered User

    Mar 1, 2019
    74
    Think ime paying the price tonight for a couple of fairly calm days. Think ime about to scream and my patience being tried to its limit. Up and downstairs, making 5 cups of cold tea, moving things from one place to another etc etc. Been to bed three times and it’s only7.30.. I hate this dreadful disease
     
  8. lilypat

    lilypat Registered User

    Mar 1, 2019
    88
    Female
    Oh no i am feeling for you
    I really do have it calm compared to you ..as OH still going to bed same time as me at moment. Even if he sits crunching his mints loudly and he is sitting up the laying down repeatedly. .how long will your OH do this wandering around?
     
  9. Jackimags

    Jackimags Registered User

    Mar 1, 2019
    74
    He can keep it up for about 3 hrs but is then exhausted- we both are!!Stopped trying to get him to sit down cos he just gets cross and sighs for England!! Tomorrow is another day
     
  10. lilypat

    lilypat Registered User

    Mar 1, 2019
    88
    Female
    Oh my you must have the patience of a saint and the strength of a lion .I only hope I am as strong as you when the needs arise thank goodness I found this site .and people like you .sending hugs for you ..we will stand together
     
  11. Jackimags

    Jackimags Registered User

    Mar 1, 2019
    74
    Thank you. It’s good to know that people on this forum know what we’re all going through
     
  12. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    925
    East of England
    It’s this behaviour that makes me crack if anything is going to. I think your OH is worse than mine so I am in complete sympathy with your situation. I can be calm, reasonable and in care mode and then he starts up with this sundowning behaviour and after a couple of hours, bang. At least he will actually go to bed eventually having been doing this from earlier and earlier.
     
  13. Jackimags

    Jackimags Registered User

    Mar 1, 2019
    74
     
  14. Jackimags

    Jackimags Registered User

    Mar 1, 2019
    74
    Ime hoping as the nights get lighter the sundowning will get later. For the first hour I keep calm but then get less and less calm which is when the guilt kicks in cos he can’t help it. Having said that I often get an apology the next morning. It’s just he can’t help it at the time. Has your other half got FTD?
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    925
    East of England
    No he has Alzheimer’s and mixed dementia they said but I think there is overlap between the different dementias because diagnosis is rather inexact. There is only just so much the doctors can do to give a diagnosis and many people seem to have to wait a long time for one, even though the symptoms are bad. He apologises quite a lot but I don’t think he knows what for. He is still continent and can walk about half a mile but gets exhausted, and he is not aggressive. It’s the repetitive relentless behaviour that gets you down even though I know that he can’t help it. I am very short tempered at the moment and have to try very hard to stop it.
     
  16. Jackimags

    Jackimags Registered User

    Mar 1, 2019
    74
    Don’t brat yourself up. We are only human - superhuman at times. We have to be or we would crumble. Hubby had a SPECT scan which gave the definitive diagnosis but it’s a rare dementia affecting only 2%. Keep smiling when you can x
     
  17. lilypat

    lilypat Registered User

    Mar 1, 2019
    88
    Female
    Hi well we are packed for our 2 nights away .it's been a stressful day up to now .but more on me than him .just need to keep calm and hope the wind is not too bad .and he does not back seat drive .... at least its only a 1 1/2 drive may not get chance to post while away ..but I will let you know how it went on Sunday
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    925
    East of England
    Oh my goodness, we are supposed to be driving over to my daughters for the day and I am dreading having to get him moving, breakfasted and off in good time. I also dread the backseat driving and huffing and puffing all the way, about an hour. I have arranged with her that if I can’t get him ready in time then they will come here. It’s ages since we went to them but quite honestly I would rather go alone.
     
  19. lilypat

    lilypat Registered User

    Mar 1, 2019
    88
    Female
    @Grahamstown @Jackimags
    I did it :) a fairly good run and only 1 moan about the speed .a bit muddled once we got here ..but walked him through the cottage and got some music on he is sat with a cuppa ...just need to unpack our over night bags and then relax ....
     
  20. Jackimags

    Jackimags Registered User

    Mar 1, 2019
    74
    Make sure you try and relax. Hope OH settles ok. Not been too bad a day here- hope the evening is as good. Enjoy your little holiday
     

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