1. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    That's lovely @Grahamstown - I was wondering how you were going. We have had a fairly social week too - but my funny story this week - we went out to a nice Italian restaurant that we are lucky to have in our tiny town- after our mains we were too full for desert so I asked for a single slice of their baked ricotta cheese cake to take home . When home I asked N if he would like to share the cake with some icecream. He said if I could trust him he would prepare it ! Yes great I said . Off to the kitchen (not far) and back 10 minutes later with cake decided into 4 serves - each with icecream ! One for each of us and one each for our dogs !! It did make me laugh. But I said - oh I don't think icecream is good for their teeth - we had better have their helpings !!
     
  2. annebythesea

    annebythesea Registered User

    I agree with the lottery on Cambridge interviews @jugglingmum, son failed his interview for engineering at Cambridge, and was pretty sore about it, but then gained an all expenses paid scholarship to study aero eng in Atlanta Georgia (after being helped to apply by the Sutton Trust). So I would say to your daughter to not be attached to it, if she gets in great but if not then no reflection on her and there may be something better out there. Good luck to her.
     
  3. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,391
    East of England
    What a lovely story @Mudgee Joy you can’t forget the dogs and he didn’t!
     
  4. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    I think my husband is at a very similar stage to yours Grahanstown, never remembers his pills, needs lots of sleep, can confuse names and generations, but I feel it will stay this way for a long time - but then an infection can come along and change all that. The evenings and the confused talk are the most straining but a carer said the other day - " just enter into their reality " - I think that is what I do mostly , except when I'm too tired or exasperated or running ... It's the best way - it's just rather lonely for us left without our reality.
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,391
    East of England
    This could be a description of my husband too @Mudgee Joy and fills me with sadness. The evenings are the same when he gets tired and confused and he never remembers his pills. He says and does the most insensitive things nowadays, pointing out personal defects or physical problems to family and friends. He did it today with our son, about his thinning hair, which totally did not need to be said, very tactless and insensitive. He has become very self centred too, and he used to be quite the opposite. I imagine that you have to be when you have dementia, because you have to cling on to some sense of self. The world seems to be contracting down around us as it becomes more and more difficult to interact with other people socially. He suddenly interrupts the conversation and goes off at a tangent probably about something on his mind so he just comes out with it. I realised that I have stopped telling him about things that have happened which would have been a conversation point because it sets off a series of questions that show he doesn’t understand what I have said. Sometimes I just rattle on about the news or the TV shows we have watched and he either doesn’t know what I am talking about or tries hard to engage. It is quite solitary yes.
     
  6. imsoblue

    imsoblue Registered User

    Feb 19, 2018
    352
    My OH is in a CH so I don't have as many daily incidents. I suspect he does host mode when I'm there. However, re the 5 year old, I think of mine as either an 8 year old or a deviant 16 year old. My 2 granddaughters are in front of me right now. The 1 1/2 year old is attempting to put on her sister's shirt by stepping into the sleeves and trying to keep them up as pants. She is getting so frustrated and out right mad, but if I attempt to help and do it right....oh no, big loud scream! Reminds me of OH. Can't do it right and don't try to help. I'm just going to stand here and scream. And you can imagine how I feel since I could help get it right in 2 minutes.
    Re Better Call Saul. It is a prequel to Breaking Bad which was an outstanding (suspenseful, stressful, and gorey) show. Saul was an attorney in BB and BCS is showing us how he got into that position. Some of the characters (like Mike) were in BB also.
    @Grahamstown you're in a fast declne with your OH. Know you are not alone in this journey.
     
  7. Rosebush

    Rosebush Registered User

    Apr 2, 2018
    1,477
    Sounds just like my OH, he speaks to everybody when we are out but nothing makes sense it's just rubbish. Yesterday my phone rang and he tried to answer it but he had picked up the remote control and couldn't understand why it didn't work! You are not alone Lx
     
  8. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,391
    East of England
    He has been left to his own devices two mornings running as I had two much needed breaks from being with him most of the time doing my U3A things. It seems to have had a tiring effect on him and made him confused after quite a good run, for him. Back to the normal routine today and he is still in bed quite late in the morning. I imagine that looking after himself is stressful and his brain goes all over the place.
     
  9. Starbright

    Starbright Registered User

    Apr 8, 2018
    423
    Female
    @Grahamstown ...my oh has breakfast in bed every day, I give him his numerous meds then it’s the battle to get him to drink enough water with them.(( he wouldn’t remember to take his meds if I didn’t give them to him )) then back to sleep, means I can get on with chores. We have this scenario with the night time meds as well. It’s so frustrating and he will not do or do anything he’s asked to,gets really angry and says the most nasty things. His day is TV ,iPad newspapers...being waited on. I sometimes think it would just be easier if I didn’t speak unless spoken to even then I say the wrong thing. I do hate this vile disease....A x
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,391
    East of England
    I could have written your message, the meds, iPad, TV, bringing him food and drinks, apart from the anger and nastiness, because he doesn’t do that at the moment. I have the problem of keeping him off the alcohol which doesn’t agree with him or his medication. He can go out though as long as it’s the usual familiar places.
     
  11. Starbright

    Starbright Registered User

    Apr 8, 2018
    423
    Female
    I don’t have the alcohol problem with him, it must be so hard for you to deal with. P cannot go out on his own gets very distracted and often a little unsteady..he will just pretend to look then step out onto the road I’ve dragged him back a few times. On a lighter note we’ve been to the opticians this morning ,he was on top form with the prettiest of opticians and host mode full on, He’s in bed now completely shattered can’t cope for long pretending and I quote “ I’m fine”
    It’s all just so sad....stay strong A x
     
  12. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,391
    East of England
    It never ends does it? He can’t help his behaviour I keep telling myself but that doesn’t help me. We have had a wonderful life together and now it is over, just marking time as he cannot control his life. He has relative freedom still but the only thing he can do accurately is follow the strong obsession to get to the pub even though he knows he should not. He can’t do much else now. It’s only because of my vigilance that he doesn’t drink himself stupid every evening so I suppose I should be thankful for small mercies. No wonder the donezepil doesn’t seem to be having much effect. I hate the sight of this man I hardly recognise but of course it’s the dementia I hate. I carry on but it’s a labour of love of a past life.
     
  13. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,391
    East of England
    I have just heard the september song “From May to September” on the radio and it reduced me to tears as it says it all really. I find certain music can make me very emotional these days. I had to listen to Bach last night which is very bracing, after I had another difficult time yesterday, what with surreptitious pub visiting at 4.30 and sundowning all evening checking doors windows and curtains etc. I do think it is a consequence of the beer or whatever he had because he was much worse than the usual alcohol free evening. Fortunately I did sleep well after a broken night the night before. Into the fray again today.
     
  14. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,391
    East of England
    Three months on, he has lost what independence he had because he can no longer find his way about anywhere, even the most familiar routes. I had to cancel my morning outing yesterday because he was not able to get up and get downstairs without help and was in quite a state. I realised I couldn’t go and cancelled yesterday and friends visiting today. It is pitiful and it is not his fault and there is nothing I can do apart from look after him.
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,391
    East of England
    The poor boy is so weak now and I have been so irritable this morning because he gets up very late, sits sighing and breathing heavily, eyes closed and hasn’t a clue what is going on but tries to be instructive. The car has gone for service and he cannot understand why we can’t drive to do the shopping. I have just been shopping with him and we walked there and back about 1.5 miles round trip and it has exhausted him. I am really caught because if he doesn’t get a walk he is so restless later in the day. The phone sat nav is only useful now for locating him which is how I know he is unable to find the bus stop to come home although he can still get in. I shall now go with him which is why I am feeling irritable because that’s one more restriction on me. Maybe it’s time to look for more help. Family and friends are helping a lot but they have their own lives.
     
  16. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,623
    USA
    @Grahamstown, I am sorry to read your update.

    Definitely time for more help, as it may take a while to sort. What about a day centre one or more days per week, befrienders, sitters, help around the house, anything really?

    I so hate how this disease always seems to be moving the goalposts on us.
     
  17. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,391
    East of England
    Thanks @Amy in the US I have started looking for day care from the pile of leaflets that the dementia nurse gave me. I have just started a new cleaner and she seems very good. My children are very helpful as far as their families and work go and friends have offered to help. I am worried about what to ask of them because I can’t be too prescriptive but if I don’t say what I need, then I might as well do it myself, which means not going to a social occasion. I think that’s why a day centre might be more helpful because caring is what they do. The problem with people offering to help is that it may end up being more work for me catering for them. It’s early days yet and I have a couple of plans in place in the short term for tomorrow and next Saturday. I try to keep my life going a bit because otherwise it’s very difficult.
     
  18. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    Hi @Grahamstown - so sorry to hear if the deterioration.i am sorry I am not there for you. You husband seems to have reached where mine is now - and once you get the right help in place it will be much easier for you than it is now.
    I have been building up my arsenal of care and now I can’t complain on that score. There is a local “carers” group and through that I found I could get subsidised assistance - not means tested - of carers- one bloke is just excellent and now I have a young lady too - my husband thinks they are sister and brother !! They take him for a drive or for coffee etc
    Then on another day there is a type of day care - but they just call it extended morning tea - 4 hours on my own !!
    I don’t ask family to do very much at all - just fill the gaps - eg - one might be asked to drop my husband at his morning tea - it’s really good to give people a specific task !
    So go link up with everything you can - your husband may not be happy at the start but honestly - persevere - they do get happier !!
    Tons of love to you Mudgee-Joy xx
     
  19. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    Hi @Grahamstown - how are things going !?! Hopefully some good improvement - but I was wondering if you should get some blood tests etc for your husband- perhaps he has picked up an infection which is causing his tiredness !?! Hope to hear from you - mudJoy
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,391
    East of England
    Thanks @Mudgee Joy I am going to take him to the doctors because he is totally exhausted doing very little, breathes as if he is hungry for oxygen and no longer wants to go out and do things that he enjoys because it is too anxious making and he doesn’t know his way about now. If I am with him he just wants to go home. That said, once home he is so happy and relaxed but he still puffs away unless he is distracted by TV or his iPad. I am wondering if it is the side effects of donepezil because those certainly are some of the symptoms. This has happened before with the breathing but no chest problems but it is worse now. Otherwise I would say it is easier for me because he no longer wants to go to the pub and is happy with his non-alcoholic drinks. We had a meal with friends at the pub for her and my birthdays last week and he managed that but the next day he was finished and spent a lot of it on his bed.
     

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