Stages of Altzheimers

Discussion in 'ARCHIVE FORUM: Support discussions' started by Jude, Dec 13, 2003.

  1. Jude

    Jude Registered User

    I notice from several postings that contributors are talking about various stages of the progression of Altzheimers. Can anyone tell me if stages are clearly defined medically? If so, what symptoms does one look out for? My parents seem to be static. Some days worse, some days better, but no real apparent alteration in their states.
    Thank you.
    Jude
     
  2. Jude

    Jude Registered User

    Dear Nada,
    Many thanks for your post. I've had a look at the Stages information and it does seem that my parents vascilate between the first and middle stages, but that symtoms vary from day to day. For example, my father used to have severe hallucinations, but recently hardly any at all. Mum sometimes cannot swallow tablets for days and then has no problem with this. Anyway, it's very valuable information as I now know what to look out for.
    Jude
     
  3. jukeboxgypsy

    jukeboxgypsy Registered User

    Nov 26, 2003
    11
    Hi Jude

    I can only tell you of my experiences with my mum and the three stages. Mum was in the first stage for approximately 6 years, started with memory things, sending a birthday card to me in August when my birthday is in January and her eyesight started to fail. We continued along this like this for a few years. The second stage came quite dramatically, her eyesight grew progressively worse, hallucinations and compulsive behaviour (trips to the loo every 5 mins) - no exaggeration on this point - just wish i had some shares in company that made the toilet tissue! The second stage lasted for about a year which took us to around August this year, and she went totally blind. Only thing mum could remember then was names of my two brothers and I and my dad but she could not associate them with us (if you know what i mean). In August to date, we hit the final stage, incontinence, no memory and her physically appearance started to deteriorate rapidly although that seems to have levelled out at the moment. Hope this helps.

    Regards

    Gypsy
     
  4. Jude

    Jude Registered User

    Hi Gypsy - Thanks very much for your post. God - tell me about the trips to the loo...!!! Every 5 minutes is ABSOLUTELY no exaggeration is it? I seem to spend my entire life in the bathroom.... and will take out a mortgage to pay for the loo rolls. Then we get the compulsive folding of the tissue and putting it up a sleeve instead of where it should be going....!

    Jokes apart, it is really heartbreaking to see one's parents deteriorate like this isn't it? Especially when you remember how vital and bright they were beforehand.

    Is your mother still living at home, or is she in a nursing home? Do hope you have a very enjoyable Xmas.
    Regards
    Jude
     
  5. Jude

    Jude Registered User

    Dear Gypsy,

    Forgot to mention before - I have managed to limit my Mother's trips to the toilet by substituting milky drinking chocolate instead of her morning cup of coffee. Coffee is a diruretic and the choc and milk acts as a food. I've been trying this for the past fortnight and she's actually only wanting to visit the loo two or three times per morning instead of 300 times. Perhaps this might help. Do let me know if it works.

    Jude
     
  6. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    I was just reading these posts and couldn't believe the odd similarities I have found. The trips to the loo are becoming more and more frequent with my Nan but the really odd thing is the compulsive folding of the tissue! I actually laughed out loud at Jude's comment about taking out a mortgage for loo paper! Someone I work with also has a family member with Alzheimers and commented to me a while ago about her compulsive toilet paper folding - which I thought was just an odd coincidence. Has anyone else experienced this? We now have nightly visits by my Nan coming back from the loo saying she needs more toilet paper and we find rolls and rolls in her drawers.

    Just thought I'd mention it!
     
  7. Jude

    Jude Registered User

    Dear Emma - Great to read your post..

    Loo paper, paper napkins, boxes of tissues, cotton hankies - you name it. There are literally rolls and rolls and boxes and little squares secreted in every possible space. Thank goodness my parents don't smoke....!!

    I've found a cash and carry shop down in Bognor Regis that sells bulk toilet rolls - and I mean BULK....

    The other pain is emptying pockets, jumper and shirt sleeves etc before clothes go into the washing machine. I've learned from dire experience about tissues... mind you, you only forget once!

    Jude
     
  8. adele78

    adele78 Registered User

    Dec 22, 2003
    20
    manchester
    Hi Jude, I was just reading some messages about compulsive behaviour. Whilst dad was still alive (he died 3 years ago), my mother's jewellery went missing. He searched high and low, could not find the jewellery but instead found £20 here and £80 there - under carpets, down the back of chairs etc.
    I went round to do some cleaning for dad after mother had gone into a home and only found one ring of hers which was under their bed. Dad was really worried about the missing jewellery, in fact he mentioned it to me on his deathbed and I assured him that I would find it.
    Shortly after he died I had to sort out their property and in a small dark cupboard next to the kitchen sink right at the very back, I found a make-up bag. When I opened it, there was mother's jewellery (hope dad was watching!).

    Adele x
     
  9. Jude

    Jude Registered User

    Dear Adele, Great Stuff....! My father hides money, cheque books and bank statements. He also carries little bags of coins around in his pockets. Quite a lot of them are old currency and totally worthless now. He also hides lots of things under his bed, which is the first place that I look for anything missing of course. He also rides shotgun on his wallet and puts in under his pillow every night. Quite often he accuses everyone [usually me] of stealing his money. He also compulsively counts it out every day. I always make sure that he has £50 in his wallet at all times, but have now hidden all statements from him as he goes over and over the amounts every hour of the day, which drives me nuts....! He has a cheque book and I have another, as POA for my parents, otherwise I'd never be able to pay any bills. He also carries a little blue book around with him, in which he records every single investment and bus fare.... Ho hum...! This is one maths teacher that won't hang up his hat.
    Jude
     
  10. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Hi, Jude, Adele, and everyone, The preoccupation with money, savings and valuables seems very common. I was so tired of daily explanations and reassurances (which seemed to go in one ear and out of the other), that I enlisted the help of someone at our branch of the building society to explain things in simple terms and emphasise that keeping savings where they are makes sense. This has helped a little bit, but we still have to go over it all again and again. Small amounts of cash are being counted often several times a day, locked away, key lost (or put in a safe place, which then remains a mystery!), and so we go on from day to day.
    The other compulsive thing is polishing CD and audio tape boxes on his trousers and jumpers: my husband has actually managed to rub a hole in his denim jeans this way!
    Still, things could be worse, and I keep reminding myself how awful it must be to live in this state of confusion and worry and insecurity. No wonder he is often tempted to accuse us of hiding or stealing things!
    Best wishes, Carmen
     
  11. Jude

    Jude Registered User

    Dear Carmen & Adele - I think that the money obsession is a form of security for my father. Why my mother has taken up folding up paper tissues is one that I just can't figure out at all. She was never the slightest bit interested in them before she became ill. I wish she taken up polishing things instead.... all we have is little 'nests' of tissues all over the place.
    Jude
     
  12. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    We have exactly the same at our house Jude. The drawers in my Nan's room are just full of folded tissue and part used rolls. The money thing is also just starting to get worse. My nan was telling my uncle the other day that she had no money and all sorts of things. She also keeps asking how she can find out her balance and goes over and over her statements. I know it can be very frustrating but it is good to hear that other people are behaving in the same way - I think it makes it seem less personal if it's just a sort of generic compulsive behaviour. If that makes sense?!
     
  13. Jude

    Jude Registered User

    Dear Emma,

    Isn't it great to know that you aren't the only one living in a circus? Bank statements are the bane of my life, or were, since I now hide them all from my father. It just got TOO much going over and over them. Usually they were several months out of date as well.

    Can't do much about the tissue situation, except keep on chucking out the dirty ones on a daily basis. At least they are blank and you don't need to discuss them on an hourly basis. Ho hum....

    I'm really interested to know exactly why certain items become like security blankets and so carefully hoarded. Bank statements I can understand, but toilet rolls are inexplicable.

    Jude
     
  14. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    I'm not sure about the toilet roll thing either, although my Mum suspects it's something to do with using them on top of incontinence pads. My nan was always very organised and used to arrange things for everyone, and I've always seen this behaviour as a very exaggerated and disorganised way of her trying to be organised still. We very often find her letters (which she opens before anyone else gets home from work) hidden in odd places. She missed an appointment once because no-one ever saw the letter!

    Everyday she folds up the foil my dad puts over her dinner, and leaves it on the worktop in the kitchen. I dread to think what the kitchen would look like if we didn't keep throwing away all these folded bits and pieces.

    Christmas day was very hard, as I'm sure it was for many. It's on days like this that you see the worst I think, as the routine goes out the window. You could see my Nan was finding it a struggle. She kept forgetting it was Christmas Day and putting her Christmas presents down and saying 'thankyou, I'll save that 'til Christmas day'! She now keeps picking up things and saying 'who does this belong to?' and 'who got me this'?

    It's so sad to see someone you know change completely like this, but I do appreciate that many other people who visit this site are probably suffering a great deal worse than we are at the moment.
     
  15. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Toilet paper and Postal Deliveries!

    Dear All

    My husband had a thing with toilet paper - apart from hoarding toilet rolls in unusual places, he had a phase of stuffing enormous quantities of paper down the loo. Fortunately our loo coped with it, but we visited friends (fortunately very good ones!) and he did the same in one of their toilets which is a "narrow gauge" one which works on an electric pump. It was very fortunate that it didn't cause a disaster, but luckily we got away with it! Paper hankies were also a favourite, and yes, I too learnt from bitter experience what happens when they get into the washing machine!

    Re: letters etc - I had to ask the Post Office to keep our mail for collection, as my husband was hiding or destroying post if he got to the front door before I did. This included hospital appointments, letters from solicitor re registration of EPA and my son's motor insurance documents and breakdown cover. Most of it was rescued, but I'm sure one or two things disappeared completely.

    Our local delivery office people were extremely understanding and helpful, and fortunately it is only just down the road. so I was able to pop in every day. Not such fun if yours is miles away.

    All best wishes

    Ruthie
     
  16. Jude

    Jude Registered User

    Dear Emma,

    Yes, it does sound rather like our oldies are on a par with the stages of their illnesses doesn't it? By the sound of other posts, I completely agree that things can only unfortunately become worse and time goes by. Do keep in touch - it's great to compare notes and comiserate.
    Jude
     
  17. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    Hi Jude,

    The thing is my Nan hasn't actually been diagnosed with dementia of any form. We've been hanging around waiting for results and scans and things for years. I've now persuaded my Mum to take my Nan back to the doctors after christmas and to try and get something done. As she's never been diagnosed I still keep wondering whether she actually has dementia, even though I know her behaviour isn't normal.

    The forgetfulness started about 8-10 years ago, which I believe is a long time in terms of alzheimers. it came on after a stroke, which is what makes me think it may be Vascular dementia, which could also explain the length of time it has lasted. if I think back to a year ago, my Nan wasn't as bad as this but it has obviously taken a long time to get to this stage. Also her sister had a stroke a number of months ago and has been diagnosed with vascular dementia already. It would just help to know I think.
     

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