1. stripedtigger

    stripedtigger Registered User

    Aug 22, 2006
    Hi, have not posted before however, had read and browsed on many occasions.

    I have a relative with early onset alzheimer's disease (only just 60 yrs old and diagnosed around 3 years ago) at our last consultants appointment it was mentioned that my relative was now in latter stages however, we did not question this and so do not understand it's meaning.

    My relative I would say is very badly affected by the alzheimers now and can do very little for himself. We dress, wash, feed take him to the toilet on a regular basis etc and have no communication at all. In fact speech was one of the first noticable things to go. At first it was just jumbled up and didn't make sense with it being a struggle to get out what he wanted to say however, after about 6 months talking just stopped.

    Now 2 weeks ago after not eating or drinking much for a few days we finally persuaded the main carer that it was best to get the GP out. This resulted in a hospital admittance and suspicion that there was an infection however, so far they have not been able to say what type.

    Any ideas or advice???

    kind regards

  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Welcome to TP,

    you don't mention the gender of the person, or any of the symptoms, so it is a bit difficult to say anything... however, I always reckon a urinary tract infection is a likely thing, though that is generally easy to spot. It has major effects on someone with dementia.

    I guess you need to wait on the medics at the moment....
  3. stripedtigger

    stripedtigger Registered User

    Aug 22, 2006
    #3 stripedtigger, Jul 7, 2007
    Last edited: Jul 7, 2007

    Thanks for your reply. My relative is a male and a urine infection was suspected at first however then ruled out and blood tests showed increased white cell count and there were spikes in temperature, which now seem to have lessened.

    Eating and drinking is poor and this was not previously the case, yes he needed feeding however always ate well when fed.

    Probably for the last three weeks eating and drinking have been minimal. It will be two weeks in hospital on Sunday 8th with no bowel movements since admittance and pretty much on a drip for hydration ever since admittance. Broad spectrum antibiotics are being administered intra venusly however he is spending large amounts of the day asleep sometimes waking long enough to be fed and at other times going all day without food or drink, though the drip is up.

    Also prior to admittance whilst toilet visits had to be regulated by the main carer he is now in nappies and pads and hasn't been able to be on his feet for longer than the time taken by the nurses to change the bed and then supported and even that for the last week has not happened they have taken to rolling him.

    When we look back that 4 weeks ago whilst not steady on his feet he was up and about pottering around the house this has all been quite a sudden and drastic change and looks quite bleak.

    Realise you cannot advise and are not medics we are not looking for that just a little comment on what can/cannot happen/be the norm in such cases


  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    #4 Margarita, Jul 7, 2007
    Last edited: Jul 7, 2007
    My mother has had urine infection and dehydration and it did seem like the AZ was worse , as in being more confused not eating sleeping more , wetting herself . this happen last year .

    I did see an improvement in my mother once the infection and the dehydration was under control .

    So I am thinking don't be surprise if in a few week time , your may find him more alert . I know every on different , but I just thought I would mention that
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Both dehydration and constipation can cause complex problems as well, individually. In combination, I'd guess it would be worse still.

    Sometimes simple things can be overlooked.

    May not be the case here, but thought I'd mention it.
  6. connie

    connie Registered User

    Mar 7, 2004
    Tigger, warm welcome to TP. Sorry that you needed to find us, but welcome anyway.

    I worry about the broad spectrum antibiotics...............what are they being administered for?

    O.K. We are not medics...........so can only speak from our own experience.

    My dear Lionel is not yet 66.....was walking, with assistance until March 07.
    Now 4 months later......bedbound. Has to be lifted by hoist from bed to chair.
    Cannot walk, stand....very,very limited speech.

    Appitite, this week, very good. No Rhyme or reason for his decline,.....but no medical intervention either.

    Tigger.....just letting you know you are not alone. I wonder, all the time, where Lionel is headed.?..............it is just the long journey that is "Dementia"

    Please keep us informed. Take care,
  7. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello tigger

    My Mum has suffered severe constipation and has had numerous urinary infections.

    With each of these, she has appeared to be very ill, not eating or drinking, hardly able to move, very sleepy and unresponsive.

    The constipation was sorted out with an enema and she is on lactulose every day to prevent a recurrence, the urinary tract infections were treated with antibiotics.

    When better, she has come back to life again and her eating, though still poor improves.

    As your relative is suffering both these problems it is not surprising he is so poorly.

    I hope the hospital soon sorts the infection and constipation out and he improves very soon.

  8. stripedtigger

    stripedtigger Registered User

    Aug 22, 2006
    Thanks, to all for your replies.

    We have been asked to go to see the consultant on Monday 9th so will see what updates we get then.

    Will keep you updated and thanks again for your posts/experiences.

    take care

  9. stripedtigger

    stripedtigger Registered User

    Aug 22, 2006
    Hi all

    well the meeting with the consultant didn't go that well. He had already been when I got there and mum was in tears. We asked he come back and speak to us which he did explaining that he felt he had upset mum and had not intended to. It seems that in his opinion dad is a very severe case. There is great concern over the not eating and drinking hence the drip remaining in place (although it now goes into dads stomach as it kept getting pulled out of his hand and also he was starting to look like a pin cushion). There is also concern about the absence of bowel movements and whilst they are taking action to correct this so far it is not working.
    They feel dad has had a water infection which has probably been made worse by the not moving of bowels and also that he may have parkinsons disease or parkinsonisms which we are told is alzheimers disease symptoms which look very much like parkinsons.
    As such they will now try some drugs which will work if it is parkinsons however, if it is the alzheimers will not.

    As for getting him on his feet well they haven't as they say he just has not got the energy - a few minutes could wipe him out for hours and he is already asleep a great amount of the day.

    I feel we have been prepared (or that was the intention) for the end however, mum doesn't hear this. Her response was "well I'll take him home, I know whats best for him" She really does not seem to accept how ill he is and I am now feeling guilty as I feel so sad that he is suffering and just wish it would all end - in a way he hasn't been dad for a while now. He knows none of us can't speak, feed himself etc and doesn't even seem to know when he has wet himself - this is not my dad.

    Mum has told me she has nothing to live for and when he goes she will do so too, this makes me feel terrible, there is me my sister and grandchildren however mum in some ways is now pushing us away as she says she has nothing only dad - in some ways I find this quite selfish after all he is my dad I too am upset.

    This is a really cruel disease that robs people of their retirements dad is only 60 and hardly knows my son, he has been ill for that long and my son does not remember dad before the illness started (he is now 10) as dad was young the diagnosis was real slow it was only confirmed about 3 years ago however dad had been ill for more like 7 years out of sorts and the like however, the put it all down to depression.

    Anyway enough for now - I don't know if I should look on the bright side and hope for the best or just get ready for the inevitable - the other thing the consultant did say was it could all just be down to the body shutting down and the very final stages of the disease. Mum did not take this in at all and really does seem to think he will get better and my greatest fear is she won't talk to anyone about it. Or read any literature or have the alzheimers nurses call to the house - I have taken them in to my home to look after them (to make things easier for me as well) and it now feels to my wife it is all our fault in fact dad is only in hospital now as my wife insisted we call the GP out as dad really did look unwell - did we do the wrong thing should we have just let nature take it's course?

    take care everyone

  10. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Tigger

    I'm sorry the visit to the consultant didn't give you much hope. It does sound as if your dad is very poorly. It could be that this is the body finally shutting down, but on the other hand, if you have read posts on this site you will know that people can recover from infections and carry on for months, even years.

    I can also understand that you don't know what to hope for. On the one hand, you don't want to lose your dad, on the other you know that the dad you knew is already gone.

    Forgive your mum, she is not being selfish. She and your dad have been together for a long time, and she just can't envisage life without him. She's not pushing you away, she's trying desperately to cling to what she knows, even though she knows your dad will never again be the man she married. When your dad does die, however soon that may be, she is going to need your support, so try to keep the relationship strong. You'll need each other.

    I think she has taken it in, she is just blocking it from her mind at the moment. Don't try to force her to talk, she'll talk when she's ready. Just let her come to terms with it in her own time.

    No, you didn't do the wrong thing, you id the only thing possible. None of this is your fault, and it's great that you and your wife are supporting your mum so well. Get rid of the guilt monster!

    Let us know how things go.

  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    #11 Margarita, Jul 10, 2007
    Last edited: Jul 10, 2007
    No I would say you done the right thing , I do feel for your mother .

    I use to think like that also
    When my father died , it felt like my mother had shut me out . I suppose because her world was my father .

    sound like your mother is in a living grief

    as your mother could be in shock and gone into denial , where in denial it feel so safe and better then to face the reality of it all

    and you with the support of your wife are going have to be the strong one , to guide your mother along this journey with your father .

    never forget us all on TP we always hear for you , when it all gets to much for you xx
  12. Nell

    Nell Registered User

    Aug 9, 2005
    Dear Tigger,
    First, you and your wife did the RIGHT thing to insist on calling in the GP. I think you would have experienced worse guilt if you had not done so - and something happened. As it is, you know your Dad is getting cared for. even if the outcome is still not a happy one.

    Secondly, I could have written the first paragraph of your letter in the quote above. Mum used to say EXACTLY the same things about Dad dying. Can I reassure you that this did not happen. In hindsight I think it is the FEAR of being without the loved one that causes such remarks. In reality, once it is over, your Mum will cope and go on living. My Mum still says sometimes that she wishes her life was over, but it has decreased remarkably in the last few months since Dad died. She even said it the other day, then added with a twinkle "but not just yet!" :eek: :)

    Please try to see this statement as your Mum's ultimate fear of losing her husband, rather than a rejection of you and your sister and your families. I felt JUST like you do, but I learnt to say things like "Well, I can understand how you feel Mum, but I hope you won't do anything. (Brother's name) and (sisters' names) and I would miss you terribly if you went." I was not above a little emotional blackmail if she got really strident about it!! ;) "Oh Mum, you wouldn't leave us without BOTH our parents at the same time would you??!"

    Such a difficult time for all of you. Thinking of you and sending you best wishes for strength to face the days ahead.
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Tigger,

    I`m so sorry you are suffering so much.

    I can`t add to what`s already been said, I can only agree.

    Don`t take your mother`s apparent selfishness too much to heart. She is so full of grief, she can only think she will be losing her husband, she will have no partner, no soul mate, she doesn`t want to face it.

    You will be losing your father, but will still have a wife and children.

    In time, I`m sure she will be upset if she knows how hurt you are, but not now. Now she is fighting for survival.

    Don`t take on guilt. There is no guilt. You have tried everything possible to help both parents.

    I do hope something can be done, for all of you.

    Take care xx
  14. stripedtigger

    stripedtigger Registered User

    Aug 22, 2006
    Thanks for all your kind words, will keep you updated.


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