1. AliceA

    AliceA Registered User

    May 27, 2016
    2,142
    #541 AliceA, Jun 23, 2019
    Last edited: Jun 24, 2019
    Hi, the three of you, It is a tough journey, my mother had oesophageal cancer. Mine own is being treated in the earlier stages.
    I am very very fortunate.
    We never really know what is best, the main thing is to ensure comfort, on all levels.

    This decline is strange. Lack of engagement, empathy is very wearing but I suppose it is the name of the game. I was warned about empathy being one of the first things to go. I am grateful for that although I miss it terribly.
    We have had a few 'can't be bothered, ' days lately, even a few well others do not have to.....
    I try not to expect, that helps me I find. I have been run ragged this morning, this seems to bring less cooperation.
    We have days, when I doubt if I can manage then another is a bit different I think I can.
    Perhaps at the end it is about one way love, still hurts,
    Our daughter called and labelled the things I had out, it was a wonder I was not labelled too!
    Now I best think it out. Keep cheerful

    Almost packed!
     
  2. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    643
    Female
    New South Wales Australia
    Thank you both @Grahamstown and @Duggies-girl for the updates !! My husband is so Much more with it !! After the drip!

    so we wait for our appointment.
    I am better at most of the care I think - and more able to skip a shower - or clean up a bathroom. Just a bit more patient.
    And that makes a difference .
    I occasionally sneak off to the local pub - almost next door- for a ‘normal meal ‘ with friends- it is a great boost to just talk nonsense and eat ordinary food.
    Big thank you Mjxxx
     
  3. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    643
    Female
    New South Wales Australia
    Things have happened today !! I have just left my husband in the local hospital and tomorrow he’ll be transferred to a bigger city hospital for the oesophagus stent !
    It’s suddenly all happening and I’m very optimistic. Even Norm was pleased I think ! Hugs MJ
     
  4. canary

    canary Registered User

    Feb 25, 2014
    9,664
    Female
    South coast
    I hope all goes well with the op MJ
    xx
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,196
    East of England
    I am so glad that he is getting some relief. You have battled away for a long time now with the feeding and I hope that the stent procedure goes well. Hugs
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    2,142
    I hope things ease, x
     
  7. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,460
    I really hope the stent makes a big difference @Mudgee Joy It did for dad and he had no discomfort either, in fact he forgot about it immediately.

    Dad had all 3 of his stents as an outpatient with me looking after him each time. You just have to be careful with food afterwards. Dad had lost 3 stone in April 2018 but put it all back on by Christmas. He lost another 2 stone in hospital in February and he has gained half of that back.

    I add double cream to everything that I can, scrambled eggs, soup, creamed rice pudding. We don't worry about cholesterol anymore.

    Will be thinking of you and hope it all goes well.
     
  8. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    643
    Female
    New South Wales Australia
    Small delay- no bed available in the bigger hospital - but I am content and able to have a proper sleep at home - Norm stays on hospital - on a drip - and looking better than he has for ages !! He is Pretending to read the paper ! :D As they do ! Xx
     
  9. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    643
    Female
    New South Wales Australia
    What do you suggest about careful food !? My husband loves ice cream - so that’s a start ! Thanks xoxo
     
  10. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,460
    Scrambled egg, well mashed with cream, ice cream is good and there are lots of soups that you can add cream to.

    Dad has managed shepherd's pie with gravy and also lasagna. Basically nothing with lumps and be careful with vegetables, nothing chunky, it all needs to be finely chopped.

    They will almost certainly give you some leaflets or recipes that are suitable.

    Calories are his best friend for now.

    Small regular meals are best.

    Dad has started to have a few problems with getting his food down so I am giving him tinned rice puddings at the moment and if it carries on I will have to give his team a call. I knew this would happen at some point but he has had his stent for well over a year. He is sleeping a lot as well. It's strange because his recent scan indicated that his oesophagus was clear of any blockage. I will see how he goes.

    I still say the dementia is harder to deal with than the cancer.

    I am glad that Norm is looking better.
     
  11. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,196
    East of England
    #551 Grahamstown, Jun 30, 2019
    Last edited: Jun 30, 2019
    Now he has started wanting to watch TV at all times during the day. I have recorded a series on Southern Africa and he watches them over and over again, laughing at the ads, laughing at the awful things that happen to the animals and land, laughing at everything good and bad. Does anyone else notice this laughing response? I am trying to figure out why he gets the laugh response to everything, is it a defence mechanism? I suppose it’s better than the anger response which is common. He also interacts verbally with what is going on, as if he needs to comment. Of course it drives me mad and I put noise reducing headphones on if it gets too bad. They were his to stop him hearing the TV when I was watching and he was working on his computer. What goes around, comes around!

    I have stopped fast forwarding through the ads. because he likes those more than the programme depending on what it is.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    9,664
    Female
    South coast
    Its called the PseudoBulbular Affect - its a symptom of frontal lobe damage.
    The other thing that can happen with PBA is that they cry all the time, even if they are not sad.
     
  13. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,196
    East of England
    Thanks for this.That is the first time I have heard of this. It is quite mild with him and happens at appropriate times about inappropriate things because it’s not really funny. It’s not uncontrolled but a response to something. He does it to some of the things I say which are not in the least funny and I have wondered what causes it. He doesn’t cry but now I am wondering what he is feeling, a fruitless exercise I know. Perhaps he really is sad inside even though he seems impervious to his situation. He is certainly completely out of it as far as any sort of normal life is concerned.
     
  14. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    4,998
    Female
    Chester
    my overall feeling is the medical profession understand very little about dementia

    although my mum has now progressed many of her earlier issues appeared to be frontal lobe related based on Canary's posts. Her memory was (isn't now) very good given that she had Alzheimer's and people commented on it.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    9,664
    Female
    South coast
    You can get PBA for lots of different reasons - including Alzheimers, because Alzheimers will affect all parts of the brain, including the frontal lobes.
     
  16. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,196
    East of England
    Anosognosia is the worst thing about this disease except for the person with it who thinks that they are perfectly well.
     
  17. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    643
    Female
    New South Wales Australia
    Hello all - it is interesting - I had to search for movies and shows that have no violence as my husband can take them for real . Often a movie sounds nice and safe and the - bam /wam - someone gets slugged. The safest program is a Chinese show called “are you the one” . The Chinese contestants are so polite!

    Anyway we are just back from 10 days in hospital - 7 locally, waiting for a bed in the big hospital. My good news is that the general anesthetic seems not to have affected my OH - he’s no worse than usual - he thought for much if the time that we were at Wimbledon- and asked the nurses when they came to take his blood samples or pressure “who are you playing next !?!’
    I would then say “oh she’s only an official ‘ or similar .
    But we are not sure if the oesophagus op was successful - no stent could go in - the gullet was too scared !! But they opening it up a little ! Fingers crossed xx
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,196
    East of England
    Hello @Mudgee Joy Good to hear that things are no worse even if the oesophagus problem is not resolved. He is feeling better too which can only be helpful, but so sad to see our menfolk reduced like this.

    My OH is having a good phase, getting up and dressed, eating better and generally ok. However his feeling better has coincided with his fussing behaviour. My neighbour has asked me to water the plants while she is away. He saw the written note and now he is reminding me all the time in case I forget! Now, having a little rant on here, I can see the funny side of it but it was red rag to a bull, that someone with virtually no short term memory is reminding me in case I forget, the irony! I sent him up to brush his teeth to get him out of my sight for a short time, and he will have forgotten by the time he gets down. Must remove the note! All this accompanied by lots of giggling too o_O
     
  19. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,460
    Hi @Mudgee Joy I have heard of the oesophagus stretching procedure and hopefully it will help your husband. At least it is done for now. Dad is now into his 15th month with a stent which I think is amazing although we have had a few problems lately with food getting stuck for a while but eventually going down. Dad's consultant explained that it is like a traffic jam effect and that dad needs to eat slower and allow every mouthful to go down before he takes another. Of course telling that to dad is another thing altogether because there is nothing wrong with him and he can eat anything.

    I am giving him sloppier food again like tinned rice pudding and that goes down really easily. If he starts being sick after eating then I will have to ring his team, they are very good and on the two previous occasions he has been seen within a week. I might weigh him again this week.

    I hope things improve for you both now.
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,196
    East of England
    Additional to previous post, my patience pot is quite small and gets used up very quickly. I then need a break to replenish it by which time he has forgotten.
     

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