1. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    #1 Norman, Jan 21, 2006
    Last edited: Jan 21, 2006
    It is so true that every case of AD is different.
    It seems that we are back to square one.After 7/8 years of treatment.
    We have the "going home"more pronounced than ever.
    The tearing up papaer tissues and leaving trails of paper all over the house.
    Manners have gone by the board,not many please or thank you,any more.
    I still have the three wives,my own sweet loving one,not very often seen now,the evil awkward one and the pathetic old lady one.
    I see more of the evil one these days,it is at times like walking on eggshells.
    The last time ,2 weeks age when we saw the consultant he precribed tablets for Peg ,he thought that she seemed depressed,he didn't bother with the memory test at all.
    As oue situation does not seem to be the norm (is there a norm for AD?) I do wonder if the fact that Peg has been taking Aricept for some 7/8 years has had any influence on our situation.
    IMHO
    Norman
     
  2. Michael E

    Michael E Registered User

    Apr 14, 2005
    618
    Male
    Ronda Spain
    Norman hi,

    Its a real bitch isn't it!

    You have been 'at it' for a lot longer than me - double the time I think and I really admire you for your courage.

    I find the constant 'emotional ups and downs' I have, in reaction to the 'new/old behaviour' very tiring. I had my 'oops' day which resulted in an improvement and a quite reasonable person to live with and I was smug I had cracked it!!! Posted smug 'know it all comments' here and then a couple of days ago It was shouting at the nurses and me and 'don't need help with anything' time again. and hating my cooking! My cooking! so hurtful...........

    It's a bit more like a marathon than a sprint and there is also a danger we get too close to the problem and stop seeing it... I think your 3 wives description sums it up well and I get the feeling there are some 3 husbands out there as well!!

    Keep taking the pills - sorry giving the pills - I increased the dose of Tiapridal for one day and that helped - well helped me not to have so much no 2 wife to cope with! Probably not PC to vary the treatment but what the hell! If you've got it - use it!

    regards

    Michael
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dearest Norman, I am so sorry at your situation, where do you go from here.
    As you say, no really recognisable pattern to the 'text book', just Peg's own ups and downs. Actually sounds like more downs than ups.
    Helpful treatment: is there any?

    Apart from anti-depressants and/or tranquilisers, which sometimes upset things unless the balance is spot on, I cannot think what to say.

    Peg has been on her medication for almost twice as long as Lionel (4 years) and it really is only now that "mental" problems are really surfacing, so I really don't know. Sorry I cannot be helpful, just sending you one of my very special hugs
    and I am only ever a pm away. love Connie
     

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  4. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Dear Norman
    I don't know what to say, but it has been helpful to me actually reading that all cases can be so different, as I am here trying to apply the theory of what I read to my Mum. I feel more confused than ever, sometimes. When did your wife start asking to 'go home'? What do you say to her? What stage was she when she was diagnosed first of all? I wish I could help you.

    Connie, I am in admiration of your animated design.
     
  5. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Norman, how I identify with your message! The ups and downs, the uncharacteristic behaviour, the random 'moods' .....

    We have been through hellish decline for a couple of months, which seems to have evened out a bit throughout December. Then, last Monday, it was as though someone had waved a magic wand: my mumbly-jumbly, restless and agitated husband was relaxed, chatty, animated, so much more focused, responsive, trying to find the toilet (doubly incontinent since October!) and managing it more often than not, smiling so much more - we were all astonished, and when the CPN visited on Thursday, she kept saying "this is amazing!". We were riding high, we couldn't figure out what might have caused this miraculous improvement, but we were just happy to find good surprises for a change.

    Sadly, the weekend has been less successful. The scared look is back on his face, the clingyness, the tendency to moan, winge and hyperventilate, and once again it took over 2 hours for him to be seated on a chair for meals ...... I felt so terribly sad this morning, but that just made matters worse. It was a very short-lived, temporary improvement, we have to take the rough with the smooth, and hope for a better day tomorrow.

    The three wives is such a good way of describing it, Norman. Three for the price of one .... Hope the gentle, happy one is there for you tomorrow!

    Best wishes!!

    By the way: Connie, your special hug is amazing - I could watch that for ages!
     
  6. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Lulu
    My wife was diagnosed with AD 7/8 years ago,not long after this the sundowning started.
    I tend to change the subject and that works after a while.
    We are in a steady decline but as Nutty says the mood swings are frustrating.

    Nan I am afraid the gentle one is missing at the moment ,plenty of verbal aggression and back biting,this is real day to day stuff
    I think I should have the pills for depression instead of Peg!!
    Norman
     
  7. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Dear Norman
    We are still following similar paths, Margaret was diagnosed in Feb 2000 and started on Aricept late 2000.

    She has been on Haloperidol since April 2005, and changed on to Olanzapine at the begining of Jan. Both given to try to reduce her aggression.

    This last week has seen a marked deterioration in her mobility she cannot now walk about the house without aid.

    Is it the drugs or is it the progression of the AD?

    She also like Peg fluctuates between agressive and frightened old lady, never any sign of happiness, haven't seen a smile in months.

    The CPN is coming on Tuesday so we will see what she thinks.

    Barraf
     
  8. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Is it the variations in AD or the fact that there are so many similarities as well that drives us, the family members/carers nuts?

    Norman it amazes me that your wife's case can be so different from Dad's. Here we are 6 years in from what was apparently 'an extremely early diagnosis' (doctor's opinion) and Dad is beyond being able to speak, communicate except for an occasional 'look' or 'sound' that we may just be reading meaning into, is completely incontinent, can't eat, drink, dress, stand-up, sit-down, coordinate his hands or feet to do any task (except amazingly he can still walk). And yet there you are 7/8 years and it sounds like things are completely different....

    BUT YET.....

    I know about the 'wanting to go home' and the multiple personalities, the evil ones especially.....

    Its the similarities that keep tricking us into thinking we might be able to find some logical progression to it all, some hint that might tell us what to expect next, something that might tell us how long we have to keep up this impossible role of 'caring'.

    Its like being trapped under ice in a lake, looking for a place to come up for air, each time we note a similarity between our loved one's symptoms and somebody else's its like thinking we've found a hole to the open air, but then we just realise its an air-pocket instead, which of course means that eventually that air will run out and we will have to hold our breath again until we can find another air-pocket....or preferably a complete hole in the ice. Its torture, some of us have to hold our breaths until it seems like we are about to die only finding the occasional air pocket. Others of us, although we find lots of air pockets, keep having to swim around madly from pocket to pocket for years on end, and this is unbelievably exhausting as well.

    On the medication side of things...I noticed last week that Dad's evil personality that we thought had passed on came back when the doctor tried reducing his epilim medication....epilim which originally made him zombie like, but these day appears to give him the ability to smile and laugh (and not in a crazy way but as if he is truly pleased to see his family members). Its so hard knowing what is the disease, the medication or the withdrawal symptoms!!
     
  9. Mirium

    Mirium Registered User

    Oct 29, 2005
    23
    Surrey
    Hi Norman, sorry you are feeling a bit down.
    I thought I must just tell you that I have been reading your posts for a few months now with great admiration!! I have often thought Wow! what a great guy. Your wife is certainly fortunate to have such a loving and caring husband.
    So I felt quite saddened to hear of your frustrations. However, as you say, "Day by day" I hope things will be better tomorrow for you.

    Hang in there, we are all rooting for you. You are such a good example to us all.

    Mirium
     
  10. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Nat
    it amazes me too.
    At the present time it seems to me that we have gone back to square one.
    Except that we have the early items,going home,paper hanky tearing and then the later items.
    Loss of confidence in walking,cannot walk without holding on to something.
    Our consultant picked up on this and prescribed tablets for depression (for Peg) I think they should be for me!!
    Focusing problems,you will recall that I was assured by the optician that it was all part of AD and not loss of sight.
    Has problems eating,I mean getting the food whare it should be.
    Ver difficult times at the moment,we seem to have lots of little rows? which are forgotten in seconds by Peg.
    On the other hand I seem to get more smiles and little cuddles.
    I have given up trying to understand and just follow my own advice day by day.
    Norman
     
  11. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Variations?............I must confess this week I am at a loss.

    Lionel is now totally sure that cheques have been taken from the house, and that he has been left a property, and I am being unco-operative to him.

    I have never had to deal with quite this type of behaviour before. Know all the theories, diverting tactics etc, but unless he is asleep it is all he has gone on about since Saturday morning.

    I do know that many of you have been dealing with similar situations, and for a lot longer, so I can now understand a little of what you must be feeling.

    This awful b----y desease, just when you feel you have one plank nailed down, another one works loose and hits you in the face. Take care all, Connie
     
  12. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    #12 Lynne, Jan 25, 2006
    Last edited: Jan 25, 2006
    :confused: Connie, can Lionel still read? If he can, then the following is not feasible.
    If not, could you create ("find") the documents he thinks are missing, and give them to him to keep safe, perhaps in one of those wallet-files you can get? You might have to disguise your writing, or get someone else to do it for you, and obviously any cheques should have the wrong year on them just in case there's any chance they might somehow find their way to your bank ...
    Isn't it awful :( to have to think so deviously.
     
  13. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dearest Norm, you have been a rock to your Peg for so long now, I take my hat off to you. What you say sounds so much like my Mum in later years. As you will know, there are no stock answers, all you can do is go with the flow. But, do take any help you are offered wont you? It is so tiring this caring lark, please look after yourself, we are always here for you, lotsaluv and a big, big hug, She. XX
     
  14. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Have to agree...

    That's it exactly isn't it?!
     

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