1. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,383
    East of England
    Last night went better than expected and I am sure it is because I have learned to deal with all his little foibles with advice from the forums. There were the usual, wanting to drink too much wine (he had a nice glass and drank it too quickly), wanting to go to the toilet often, two floors down from the auditorium, checking his watch throughout and wanting to go home in the interval. I managed all these pretty well because he was compliant even though requests were repeated over and over again. All this said he really got into the play and made exclamation noises and was suitably shocked by the bad events which were pretty graphic. It was as if it was real life. So I had a great time, thoroughly enjoyed it, but will I do it again? Probably not! He is still in bed this morning probably worn out by the late night. Tomorrow I am going to meet friends in London for the day and my daughter is coming over with the grandchildren. I value your advice @Mudgee Joy and have made an appointment for a review of his health with the doctor next week. The wheels grind slowly.
     
  2. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    The evening really sounded lovely @Grahamstown - perhaps the less we expect the better things turn out!

    But yes see the doctor - my doctor friend said at the beginning said - slow changes are dementia - fast changes are something else added-
    So if it’s another problem on top it will improve - perhaps he will get more of his energy back - but you might like to keep some of the changes!! (Compliant is good!!)
    Do let me know how the check up goes! Have he had his lungs X-rayed !? Short of breath - my husband’s lungs are awful - but no point in worrying there ! certainly check out pulse and blood pressure !!
    Take care -love and hugs mug-joy x
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,404
    I am glad you enjoyed last night, yes, it does seem to be a question of whether it is worth the candle to repeat.

    good advice about changes, Mudgee Joy
     
  4. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,383
    East of England
    I had a good but tiring day out with friends in London where we had lunch, went to the Mithraeum, a Roman temple unearthed in the city and now has a museum built over it in an interpretive display, very atmospheric. Both my friends have memory problems and keep pausing for someone to supply the answer. One asked if I had read a book and couldn’t remember the author, when I asked what it was about she couldn’t remember and nor could she remember the title! Well we did see the funny side of it. He had a good day with his daughter and grandchildren, didn’t do much heavy breathing, didn’t go for a rest but dozed in his chair a bit. It’s amazing how a PWD can make a good job of trying to be the old self. He did his usual sundowning all evening and my daughter said she could see how it would get on your nerves but that he really tried to be the same old Dad. It was good for him and I felt how good it was for me to have a break from the daily grind.
     
  5. AliceA

    AliceA Registered User

    May 27, 2016
    2,404
    I am pleased you got some benefit from your day, the temple sounds fascinating.
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,383
    East of England
    This is my favourite time of day, getting up early, having my tea and reading my newspaper before he gets up. Then he comes down and immediately starts breathing as if it’s his last and my stress levels start rising. He apparently didn’t do this yesterday so what is going on?
     
  7. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    #87 Mudgee Joy, Dec 9, 2018
    Last edited: Dec 9, 2018
    Hello @alice , Grahamstown and all -
    my husband has just gone to bed - it’s very hot here - still 34degrees - but it’s only 8 pm - (usually he can last till 9pm) so I have my hour or so at the end of the day - except i still feel anxious.
    My husband probably sleeps 12-13 hours a day ! That’s probably not unusual with dementia and at his age of 87.

    But he seems especially tired today and shuffles instead of even his slow walk. I think one of the problems RE anxiety is that with every bad turn you wonder what next. So I’ll be interested to see how he is in the morning - fortunately his favourite carer will be here for 2 hours.

    And his humour is good - so I must count my blessings . Night Mud Joy x
     
  8. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,383
    East of England
    I always feel like a complete heel when I get frustrated with my husband because he is the sweetest man. However he is not the man he was, like a different person. I said that if he really needs to breathe so heavily and laboured then he needs to lie down. He didn’t need much encouraged to do just that. He is 80 @Mudgee Joy and tells me that now he doesn’t have to do anything and that he is just aging! After his family visit yesterday perhaps all he needs is his grandchildren and their dog to keep him amused. They are teenagers and would probably flag sooner or later.
     
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,383
    East of England
    The Christmas cards are causing trouble and sadness for me. He doesn’t know who the people are even when I tell him, more than once too. I don’t think it matters really, only makes me sad and after all nobody else can know. Low key Christmas is a good thing for us, we shall see our son and family in the period around Christmas Day, but he talks about our daughter and she won’t be coming because of going to her in-laws and he can’t understand so I shall just keep quiet.
     
  10. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    We have a quiet Christmas - but yes I like it that way - my husband’s children all have their families to be with - and I’m happy to get off with a minimum of fuss and some real peacefulness ! Off to bed X
     
  11. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,383
    East of England
    5C62ECDC-DB39-4D21-B9F0-3442FF6494F2.jpeg
    Christmas greetings - this is the template for my Christmas card this year which I hope brings a little cheer.
     
  12. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,383
    East of England
    Review today with a super young doctor who gave him plenty of time, took him off his drugs and advised him (really me) and gave him the lowdown about his condition. He can’t remember and I bear the burden of this awful disease. He thinks he is fine which you can’t knock.
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,404
    Lovely x
     
  14. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    Hi @Grahamstown - how is your husband now after “off the drugs” for a few days !?
    I hope it’s going well for you.
    In consultation with our doctor - my husband’s drugs are pretty minimal. Less is good !! Love MJ
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,383
    East of England
    I have stopped the statin and trailing off the donepezil. The young doctor called this morning and was so supportive and empathetic that it made me cry, to have a professional onside is marvellous. Probably has had some dementia training. He discussed respite with me and suggested the way forward for our situation. It’s good to know somebody understands completely what outlook is likely.
     
  16. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    Excellent!!! Xxx
     
  17. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    You just do need some “husband free time” - or ‘wife’ :D
    I have an offer of a weekends away for my husband - it’s funny how hard it will be to actually make that decision o_O
    MJx
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,383
    East of England
    You are right because at the moment I just can’t do it. He is so dependent now and so sweet and appreciative of all I do. He has stopped being so obsessed by alcohol although he tries to pour another drink from the bottle with the lock cap. It is low alcohol but I am trying to get him into the habit of one ‘alcoholic’ drink and then something else. It seems to be working but as life gets easier he gets worse and worse. So fast that I can hardly keep up, it’s a reaction game.
     
  19. Lost73

    Lost73 Registered User

    Dec 13, 2018
    10
    Female
    Hi Grahamstown. We are all acquiring skills every day! Do you have a Carers UK group near you? They are solely focused on supporting us as carers and everyone I have dealt with has been fabulous. They always make me cry as they are so on your side and can support you with respite.
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,383
    East of England
    A bit of a breakthrough for me really. After the discussion with the doctor when he telephoned, I decided that the time has come to check out care homes for respite. There happens to be one not far from us and when he was well he often said that we could go there if we ever needed to. We did an Open Day visit a few years ago and since then it has been taken over by another company but the same staff etc. I persuaded him to come with me after a lot of resistance because he can look after himself perfectly well. So I pulled the ‘I need to go in case I need it and in case you do too’ and that worked. I didn’t tell him all this until before we were due to go and it was the right thing to do. It is very nice indeed, very clean, fresh, decoration recent and above all smelled sweet. I have been in quite a few care homes either visiting or when I worked and there is frequently a urine smell. We toured the different areas of care because it is divided into different categories and it is a bit like a hotel with carers. They do short term respite as well as rehabilitation, nursing and dementia care. The staff were welcoming and pleasant so all in all he was very taken with it and said he would be happy to go there if needed. I wished I could check in myself! Of course he won’t remember but he has seen the outside many times so it might stick a bit. Anyway I feel that I have an escape valve now I need it.
     

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