Always get more than one opinion for the really important things!

Discussion in 'ARCHIVE FORUM: Support discussions' started by jc141265, Oct 16, 2007.

  1. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,424
    Having just gone through this with my husband (who doesn't have AD) I can tell you that if it WAS a lung abscess you'd know what I meant about foul smelling sputum (as in can't be in the same room as them foul smelling). I suppose there might be degrees with this though. Mine also claimed to be in no pain (!). He didn't have noticeable fever either. Good luck with this.
     
  2. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    jennifer-thanks again! Will keep my eye on Eric. It's easy to latch onto symptoms and think-could this be what's causing the problem.. difficult to get an idea when the feedback is scarce!
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi gigi. Food aspiration is a common symptom of FTD, and particularly of PPA, which John has. In fact, it's the most common form of death in PPA sufferers. But John so far has no problem with swallowing. I keep an eye on that, as you can imagine.

    It does happen too in the later stages of AD, but can happen quite early on in FTD.
     
  4. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    sorry Skye-what do those initials stand for?
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Sorry, gigi. All these initials are very annoying aren't they?

    FTD = fronto-temporal dementia

    http://www.alzheimers.org.uk/factsheet/404

    The factsheet says it's a rare form of dementia, but we do have a lot of members of TP dealing with it.


    PPA = primary progressive aphasia

    A very rare form of FTD, where the language centre of the brain is affected first, and for several years gradual loss of language is the only symptom. However, in the later stages the damage spreads to the rest of the brain, and decline is fast. This is what John has.
     
  6. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Thanks Hazel- I'm learning a lot here! Have taken Eric to doctor-he does have a rip roaring chest infection and now has some antibiotics. Have also read the fact sheet with interest. Wising you and John well. Love Gigi x
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi gigi

    Hope the antibiotics kick in quickly, and Eric is soon feeling better.

    Love,
     
  8. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Again thanks Hazel for your good wishes. Eric is poorly-mum and my daughter saw him today for the first time in a few days and were concerned for him-when you're with it all the time you don't necessarily see the changes. I'm glad (maybe you don't know yet ) that I've made the decision to give up work. Have given 4 weeks notice from Monday 10/12 and if I'm really honest don't want to leave him ever again. He seems so fragile and confused-Hope I haven't left it too late. If he's no better Monday I'll have to ring work and let them down! Hate being in this situation but Eric has to come first! Love Gigi x
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Gigi, I'm so sorry. I know how you are feeling, as you know, I've seen what an infection can do to someone with dementia.

    Antibiotics can take 3/4 days to kick in, so it may be a while before you see much improvement. Try to stay strong.

    Perhaps it would be an idea to take some time off work anyway, if your boss is understanding.

    I hope all goes well with Eric.

    Love,
     
  10. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hazel- I've reached the point where it doesn't matter if anyone else understands or not-that's their problem. Eric is my prime concern now. will do my best for him! x
     
  11. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dear Nat,

    Yes, you have to be on your toes with medics, always question, question, question - though it ain't easy when you are stressed and distressed. My dad was labelled nil by mouth and do not resucitate cos he had inoperable stomach cancer and had suffered a heart attack during his second bout of chemo. We weren't asked our permission for the do not resucitate, we were just told. If I ever face that again, I will refuse to accept it, cos my dad bloody knew what the label meant and he wasn't ready to go. He lived another 18 months after that night, was still driving after 16 months, possibly 17. There were plenty of medics who told us it would be kinder at the time to let him go, cos the cancer was inoperable and he would suffer a long and painful death - but he didn't. We didn't have to choose, thank goodness, my dad chose to live. When the time came for him to die, we all knew it had come, but it came on rapidly, until a week before he died he had been able to walk and look after himself at home with mum, laugh, and although he knew he was very ill he coped. He spent just one week in the hospice having suffered nothing more than "discomfort" the whole time since his initial diagnosis, and passed away in minutes. Sadly we weren't with him. The hospice was 25 miles away and only 30 minutes before he died they phoned to say he was asking for my mum, but there was no urgency, they said. Somehow I knew there WAS, so I went straight to her house to get her, and by the time I got there he had gone. He made his own decision, it seems, as to when to go. But we had 18 good months extra with him since that dreadful night.

    Re the fluid on the lungs and food problems, my daughter's boyfriend's mum has MS (of an unusual variety). Over the past year she has lost the ability to speak, then to use her arms, and eventually she started swallowing food into her lungs. She was hospitalised about 3 months ago, and the family gathered to make the same decisions that you had been faced with (though no surgical procedure was offered). She is totally immobile, but mentally completely alert. They chose the option to continue with the treatment in hospital to keep her alive. A remarkable recovery ensued and she simply stopped taking food into her lungs. No-one appears to know why, but she did. So she is back at home where she is loved and cared for by her husband and regularly sees two of her three sons, and is comfortable again. The family are looking forward to another Christmas with her.

    So, Nat, and anyone else reading this, never believe what options you have, always ask if there are others and what the consequences will be. Of course, there might be a point when we know in our own hearts that nothing more can be done and the end is imminent, but there are just as often those points when we aren't quite sure, and I believe everyone has a right to take advantage of those if it is right for them.

    Good luck, I wish you well. Yes, I shed a tear or two at your courage.

    Much love

    Margaret
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.