1. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    Hi Grahamstown and Duggies girl - I’ve come home from hospital with a head cold ;). So I’m a bit slow today - plus our weather is mid winter and very chilly and dull - but Norm has been getting most liquids down. Yeah !! He is on clear food for a week at least - soup (broth) , jelly, milkshakes, icecream - he is hungry too but not desperate as he was before the op.
    They could not do a stent (not enough muscle) or a balloon ( thought his gullet would rupture) But they dilated the oesophagus a little -15-18mm - and so far he is improving .
    With better food inside him - he is more spritely - still quite demented- but not worse - sundowning still a B nuisance - I really despair with it - I think for me it’s the worst aspect !!
    But I did find in hospital - whatever shape he is in, I am unable as yet, to countenance loosing him. o_O
    Who is Crazy !!! Me I think !!
     
  2. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,394
    East of England
    I felt very moved by your comment which is such a heartfelt thought, however bad it is the thought of losing them is painful, certainly not crazy. As for the sundowning (I started writing ‘moonlighting’, ha!), me too. I now try to ignore him and just um and ah because whatever I say, he carries on. So, as I don’t like getting exasperated and cross, I am impassive. He doesn’t like it much because I think he wants some interaction, and if I am reading or listening not watching, he is stymied and doesn’t know what to do. I am so pleased that you are having a more tranquil time with the feeding. My husband is complaining of difficulty getting the food down but he has mainly soft food and if he has water sips he can still manage. Thinking of you all because we are all in it together virtually x
     
  3. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,547
    That's good news @Mudgee Joy and being hungry is good. Dad's never hungry and complains that everything that I give him is far too big to eat. It's not, it's usually very small and he eats it all even while complaining. I do get fed up with this sometimes and just disappear into the kitchen.

    I am giving dad softer food @Grahamstown His consultant explained it as being like a traffic jam at the moment and it does go down in the end. Fizzy drinks help him. Yes we are all in it together.
     
  4. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    I think the really tough thing for those of us who care for loved ones is the ups and downs are soooooo exaggerated - we are at deaths door - then drinking milkshakes happily; then really crook again - I have started so many obituaries in my head - it’s exhausting!! Xx
     
  5. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,547
    Oh that is so true. Dad has gone from 12 and a half stone down to 8.5 stone then back up to 11.5 then 9 stone, he is now hovering at around 10.5 stone. All of this within 18 months. We have a huge supply of milk shakes and around this time last year he was on 8 - 10 a day, with his record set at 12 He is on 3 or 4 at the moment.

    It's like being on some mad roller coaster at time, never knowing what is waiting round the corner to jump out and scare you.
     
  6. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    Yes so true !! Does Duggie like soup ? My norm has at least 3 soups a day - and every one is like the first - “this is such great soup “ he will say !!
    Also jelly and squashed fruit - I’ve found the kids pulverised fruit useful - or I mash bananas and of course ice cream. !
    I need to eat some of my meals secretly as he can be jealous- or I eat stuff he doesn’t like ! :)
     
  7. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,394
    East of England
    Yesterday I had a day off and our daughter came to look after him while I went to London for the day to an exhibition of the work of Joachim Sorolla, a wonderful Spanish painter of the late 19 and early 20C. I met a friend for lunch at the National Gallery for a delicious Spanish themed lunch and then toured the exhibition with an audio guide. I planned it carefully and had a great time although it was hot, London is tiring and my legs are not as good as they were. My dear daughter had the full experience of looking after her dad, and said she hadn’t really realised how bad he is now and the sundowning really shocked her, because she stayed the night and saw it in all its detail. She is more considerate of him than I am in waiting on him but she enjoys it and it is only for one day. She has offered to look after him in September so that I can have a two week break but I think she feels a bit daunted now that she understands the situation more. I shall try and get him into the same place for respite if they have a room. I am also recovering from a sudden occurrence of blisters, itching and swelling of my hands which I self treated successfully and have finally realised were hives, do you remember the old word? One of the causes is stress as well as the usual allergy, foods, heat and bites, none of which were relevant so I think that may be it.
     
  8. AliceA

    AliceA Registered User

    May 27, 2016
    2,405
    Poor you, I used to get hives when a child. Trust the exhibition was good, lucky you, we saw his house once. Xxx
     
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,394
    East of England
    We have had an up and down week but the chief change is his reluctance to eat. It is getting difficult to get him to eat even small amounts but at the moment I am persevering. He looks at the food and there is either too much, or it’s too hot or too cold, in fact the first thing he does when he looks at his plate is complain. It’s soul destroying. I think the food is good because I enjoy it even though cooks often don’t enjoy their own food. He was just the same the last time we ate at our local pub which he used to love. It’s a vicious circle because the less he eats the more weak he becomes etc. etc. I took him out for a haircut and shave yesterday and then for a drive to the care home he stayed in for tea. He had requested that we go and look at our old home which we left 22 years ago and he did enjoy it. He seems to have forgotten about our recent home of 20 years, which we left nearly 2 years ago. Again memory is even worse than earlier this year and strange lapses nearly every day.
     
  10. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,547
    @Grahamstown dad huffs and puffs his way through everything I give him, it's too much, he couldn't possibly eat all that but he does eat it. I sometimes walk off and go out to the kitchen so I don't have to listen.

    I give him lots of high calorie chocolate pots. It's funny that he can manage them at over 300 calories each and he never moans about them.

    The only place dad goes now is to hospital appointments and that involves planning. It needs two of us now and involves a wheelchair. It's a lot of effort.
     
  11. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,394
    East of England
    Huffing and puffing is constant here whether he is bemoaning the food or just sitting doing nothing. The two of them would be very happy just sitting together by the sound of it @Duggies-girl because their symptoms are so similar. I got him to walk the farthest for ages this evening which was not very far and he had a glass of beer which he had trouble finishing, amazing when you remember his problems with alcohol, and a snack. He was pretty exhausted by the expedition and off to bed for his usual evening perambulations, up and down, up and down. I must admit I was worried that I had overdone it with him but it was so lovely trying to imagine normal life for a brief moment in the midst of his angst.
     
  12. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,394
    East of England
    Shed a tear this morning reading the sports news. My sports loving husband didn’t want to watch the cricket when I suggested it to him and he left the tennis I was watching as the final set tie break was underway. For a cricket mad man he was unable to take any pleasure from the World Cup, being barely aware that it was being played, much less how his team were playing. So much lost.
     
  13. TNJJ

    TNJJ Registered User

    May 7, 2019
    437
    Hi.I also have a lot of hugging and puffing with my dad over everything.Just a quickie but my dad vocalises when eating,reading or on the toilet.There is a lot of "mmmmms".Has anybody else has this?
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    OH has just started giving loud sighs and heavy breathing a lot of the time.
    He has also started to mouth the words when reading and even (quietly) read out loud.
    I think repetitive sounds are a self-soothing thing.

    Yes @Grahams town, so much lost here too.......
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,394
    East of England
    Yes, yes! Interacting with the tv is quite frequent, but at the same time doesn’t know what is going on.

    [Yes @Grahams town, so much lost here too....... ] it’s heartbreaking isn’t it canary? It seems to symbolise it all.
     
  16. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    659
    Female
    New South Wales Australia
    Hi all - I have just had 2 nights away - my biggest break - but a lot of sundowning resulted which caused me anxiety while away !
    My OH was keen to watch the Tour de France but soon forgets it’s on and wanders off ! I sit through football - although I don’t enjoy it - to show empathy :)
    My biggest news though is the results of my husband’s oesophagus op. The doctor found he could not put in a stent (not enough muscle) and the balloon would be too aggressive-?but he widened out the oesophagus somehow and over the 10 days since Norm is keeping down more food !!
    Tonight I made a bowl of pulses, mashed potato, cauliflower, asparagus and Halloumi cheese - and it stayed down !! I can’t get too excited as I’m really too warn out to be optimistic about anything - but it’s a relief ! o_O
     
  17. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,394
    East of England
    I am never optimistic about this disease which is counterproductive. It is a steady decline and me trying to carry on keeping him comfortable and contented. I fear that I am the one who is neither as the feeling of being alone intensifies every week and I do get to the end of my tether with the disordered behaviour. It’s very strange feeling normal and being faced with abnormality all the time. He can hardly remember anything now about the recent past.
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    2,405
    The other day a Zen saying came into my inbox. Expect nothing and you will avoid disappointment.


    Certainly seems to apply in handling dementia! Two days ago I picked up after the hassle of sorting after the break, I found an agency. I had a plan! Fool as I am!
    Today is a bad day all round I have an infection, social services have not made the promised phone call for the third time over the same issue. Several spam calls, I must find out why. I thought I had these sorted.
    There is no cooperation just stubborn demands. Agency contacted but I cannot decide with knowing some facts. The song a hole in my bucket comes to mind! Just feel in a catch 22.
     
  19. kindred

    kindred Registered User

    Apr 8, 2018
    2,199
    I do so agree about being normal and faced with abnormality. It is a testament to our minds that we can hold the line on normality most of the time and not be full of disordered behaviour ourselves. Yes, it confounds all our plans. Thinking of you with love, Geraldinexx
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,394
    East of England
    You are in my thoughts dear @kindred because what you are enduring is unbearable and yet you bear it.
     

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