1. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    After 7 years of Aricept we now seem to starting some early symptoms again,which we have been through before.
    Tearing up lavy paper and putting loads in the lav pan.
    Going home is worse than ever,every night now,it eased off before but it's back, shoes on ,lipstick, ready to get in the car.
    I n addition to these we are getting some illusionations,somebody sitting in a chair,some times a cat.
    Difficulty in finding the correct light switches and memory almost non existent.
    Night waking and wanting to get dressed.
    Anyone had this progression rather than a tidy text book, down hill path?
    I know each case varies but to me this latest twist is strange.
    Cheers
    Norman
     
  2. Chris

    Chris Registered User

    May 20, 2003
    243
    Hello Norman

    Sorry to hear this Norman - was wondering when this started ?

    Is it just a coincidence that its Christmas time ?

    In a dementia care home I visit - just before Christmas a number of the residents were very restless & agitated - the staff commented they had been worrying that they hadnt done their Christmas cards & hadnt got all their shopping done.

    In fact of course - all this was done FOR them by their family or for some not done at all if no family or frineds.

    I think Christmas is a stressful time especially for women who traditionally do a lot of the catering & cards & decision making over menus and present buying etc etc (Not a politically correct statement & apologise to all men who have always done a fair share. As carers many of you will be doing everything these days i know). I'm just looking at what triggers stress at this time of year . If I'm right & females in particular feel the load of responsibility in December - then maybe when in dementia the sights & sounds of Christmas still trigger the feeling that one should be rushing around being busy - more than sitting back supping sherry & watching tele - all of the time. So... if someone is feeling like that & isnt going out or doesnt have cards to write or gifts to wrap (as is probably the case in care homes) its no wonder some are feeling stressed. I remember one care home where the home gave presents to everyone & before Christmas these were all laid out on lounge floor & staff & everyone had a present wrapping session.

    If it is the time of year - maybe this is just a phase - its also the time of shortest daylight hours - I know I'm clutching at straws but I gues its worth trying things - if no possiblility of side effects. Have you tried artificially lengthening days as it were . By using a special day light - as used by people who suffer from SAD (Seasonal Affective Disorder - very common i think). BOOTS (the chemist) sell a lamp - quite attractive looking one - it was featured in their Christmas catalogue - but there are a lot around. You just put it on & sit by it for a couple of hours ! eg on the breakfast table - I think it has been tried to relieve Sundowning. Not sure of results - most resesarch on this sort of thing has been inconclusive but has worked for some.

    Sorry - wittering on as usual !!!! Hope things get easier for you soon.

    Am I making sense ?????
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Norman
    sorry to hear this.

    I'd wait until things settle down after Christmas before worrying too much.

    Christmas is, as Chris says, a very unsettling time, especially for people who can only cling on to a normal pattern of things. Even if we try to make things 'normal' for them, we ourselves are unsettled by doing the cards, worrying, thinking of Christmases past - and what lies ahead in Christmas Future - and this will undoubtedly be picked up by them.

    Hang on in there. There is no text book to follow. Each case is different. Each day is different.

    So - all together now - "Day by Day"
     
  4. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    #4 Mjaqmac, Dec 29, 2004
    Last edited: Dec 29, 2004
    Dear Norman

    Sorry you're having a bad time, it's so disheartening when it all flares up again. I think the going home thing is the hardest thing to put up with for a carer (only my opinion).

    Mum too has been ripping up tissues and loo roll and keeps thinking my handbag or the cushions are cats or babies. She has taken against the tv and thinks the actors are people looking at her from the corner of the room. I'm having to switch it off and sit in silence. I can't wait to get her back into daycare it's been weeks now just stuck here in the same room all day everyday, I'm so tired at night I can't be bothered when my fiance visits and I fear this relationship may be on it's last legs, if only he could experience the exhaustion I feel, but how can he possibly understand?

    Mum has been unsettled and developed a chest infection since the whole Xmas affair. It's so unsettling for her to have a house guest etc, it was her own sister and the woman never even took mum under her notice, it was a nightmare! Also I had been bought a puppy by my fiance last month but at 9 weeks he was far too needy and I almost collapsed with exhaustion trying to look after him and mum, dad and the house. I had to give him away, it nearly broke my heart, because he was great company and I adored him. It seems when you are a carer that's ALL you are, there's no room for anything else.

    You're wife will hopefully settle when the New Year business is all over, I hope so. You're not on your own Norman. Keep on hanging on.
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Magic

    I'm so sorry that the puppy proved too much for you at the moment. Don't forget that things will change over time and you can re-consider that whole issue again later.

    Sounds like - from what is happening - that now would be a good time to buy shares in Andrex or drain-unclogging companies.

    Regarding the TV thing, it kind of brings to mind the film "Pleasantville", where the main characters are sucked into the TV and become characters in a 1950's soap opera. All black and white until they start to change things. It was the first DVD I bought and is a really great film. A good laugh for when you need one!

    Best wishes for New Year!
     
  6. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Brucie the puppy thing nearly finished me off. It was such a hard decision to make but I was so exhausted I kept falling down, (and I wasn't even on the vino!) It broke my heart to see him go but it was a bit like trying to bring up a child, I'm ashamed to say, I just couldn't cope.

    Have seen Pleasantville it was good. Is the tv thing an alzheimer's issue or is it just mum thinking they are looking at her? Mum also seeing sausages everywhere, the mind boggles!
     
  7. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Dear Magic
    My husband thinks we have done the things he sees on TV, also he does not recognise what he sees on photos I showed him a picture of the cars parked out the front of our house and he thought it was a water wheel, the road was water.
    Anne
     
  8. Chesca

    Chesca Guest

    Dear Norman

    Sad to hear the problems you and Peg are experiencing. We had a lot of this, it never went away and occasionally it still rears its head. Every day she packed to go home, clothes shoved into carrier bags (always was a stylish traveller, Mum). The hallucinations were sometimes traumatic - my brother was killed some years ago and she kept asking where the little boy had gone, the little boy who had just been sitting there. I don't know whether it was my brother or somebody else. Just to placate her I'd tell her that he was tucked up having a snooze and all was well with the world. It's a killer. The things she sees under the table I chase for her after asking does she want them to go. Whatever she is trying to get out of her hand, I hold out mine for her to place the invisible content and take it away. You can't fight it, try to play the game.

    The biggest problem is lack of sleep, primarily for you as you are the one having to cope with all the stress. You must get some rest yourself.

    Mum was subsequently reassessed by the consultant who found that the Aricept was no longer of benefit - I must stress that this was in our case. There are no tidy text book cases. The whole damn experience is a shambolic journey from one crisis to another, just when you think you've got it cracked! Ha!

    Take good care of yourself, Norm, and every opportunity you can to have some time for you, even if just to relax. Otherwise you'll go under and that will never do.

    Lots of love
    Chesca
    xxx
     
  9. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    the "TV" thing

    Dad would often go through to the kitchen to tell Mum there were some mad people in the front room. In fact it would be some daft kids programme that his grandson was watching.

    We found we had to avoid programmes such as the Bill or detective/crime types as a few hours later he would "see" people hovering around outside and would be intent on sorting them out!

    Kriss
     
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi all, boy these posts read like my old diaries. Kriss and Anne, Mum too took umbrage at the TV sometimes, or thought it all was real and happening to her. She also told me that my Nan used to see her reflection in the mirror and think it was someone coming to get her. Mum's solution was to take the mirror down, same as you turning the TV off Magic. So sorry to hear about your puppy and the heartache it must have caused you. Norm, Mum went in cycles as you describe, and yes Chris, triggers did start it off, so lets hope Peg will settle a bit once things are back to normal. Ches, Mum had a suitcase at the bottom of her bed that she regularly packed (I unpacked when she was at day care) during the night etc. ready to go home. We have so much we can share on TP, thank goodness we all found it, 'cause as they say, shared is halved. At least it means we can talk to others as Brucie says who are on the same journey, regardless of where they are at. Love to you all, She. XX
     
  11. nikita

    nikita Registered User

    Jul 31, 2004
    92
    tissue thing

    my gran also had a tissue thing she still now likes her pockets full of paper tissue, she used to fill her drawers with them. I am concerned about how tried people are if you are so tired caring then you need a break all carears need a lilttle time for themselves even if its just a bath in peace. take care norm hopefully things will settle back down.
     
  12. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Brucie talking of dvds, I watched "Something's Gotta Give" the other night, it was great. I ended up getting the soundtrack for the movie too, it's lovely.
     
  13. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Dear Norman

    Margaret has been on Aricept for 5 years now and I am afraid it is coming to the end of it's useful life.

    We were told when she started that it's effectiveness was on average 2 years. So I suppose we must be thankful for the extra 3 years we have had.

    Her handbags are full of tissues and serviettes which she collects whenever we visit a restaurant or cafe. Emptying them is one of my regular chores.

    She is also frightened by any angry shouting on television, and will wring her hands and bang them on her knee. I have to reassure her that it is only a story and not actually in the house.

    She sometimes asks where that woman has gone when there has been nobody except us in the house.

    The other day she asked where Frank was, that is me. She also asked the other day if I was stopping the night and seemed quite pleased when I said yes.

    You just have to roll with the punches and try to fit your answers to suit the occasion.

    Her abiliy to do the simplest things is also deterorating. and she cannot follow more than one instruction. For example at breakfast time I always put the milk for her coffee in the pan and the instant coffee in a mug. Up to recently she would light the gas under the pan and when the milk was hot pour it into the mug. Now I have to light the gas and when the milk is hot tell her to turn out the gas. Then I have to tell her to pour the milk into the mug. If I tell her to turn off the gas and pour the milk in one sentence she is lost and can't do anything. It would of course be far easier for me to do the lot but I try to involve her as much as possilble.

    All the books and advice from the professionals is that AD sufferers must be encouraged to do as much as they can in order to feel useful.

    Personally I am not too sure that is correct, as if you ask them to do something which is beyond their capabillities you are perhaps undermining what little confidence they have left.

    And of course due to the nature of the illness the goalpost are alway moving, so you are continually guessing what is possible and what is beyond them.

    I am sure all my moaning will have cheered you up Norman, but you did ask.

    Cheers Barraf
     
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Barraf

    you say "All the books and advice from the professionals is that AD sufferers must be encouraged to do as much as they can in order to feel useful. Personally I am not too sure that is correct, as if you ask them to do something which is beyond their capabillities you are perhaps undermining what little confidence they have left."

    I tend to agree, once the person deteriorates beyond a certain stage.

    I found that the confusion and anguish caused by Jan to herself in having to do what seemed to be simple things - writing her name was the classic one - had me doing the things for her. There seemed no sense in just making things worse.

    Even now, getting on for four years after she last left our house, I am still finding things she hid away. It is quite devastating.

    As you say, the goalposts move. Today she smiled at me. That is the equivalent of the Lottery.
     
  15. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    #15 Norman, Dec 29, 2004
    Last edited: Dec 29, 2004
    Dear All,
    thank you for your reasuring messages,that sounds daft but you all know what I mean.
    I agree with most of you ,in fact Baraff and us are almost following a similar path,he says so much that fits our life.
    The experts do not know it all, you must have been there to experience anything properly,we have.
    I cannot agree with the stages of AD,every one is different,I did ask the question for a reason and the answers confirm my beliefs.
    Today has been a wonderful day,Peg was happy and seemed like her old self from the time she awoke.
    Our Wednesday sitter came and Peg went out with her this afternoon,no argument,kissed me and said see you soon.
    When I returnd home she told me how much she loved me,how good I am,I am a saint and she could not live without me.
    She makes me promise to never leave her,looks at me with those beautiful eyes and it cracks me up because one day I may have too.
    Yesterday I thought day to day tomorrow will be better ,and it was
    All best wishes and kind thoughts
    Norman

    ps. Bruce
    I know what you mean about winning the lottery
     
  16. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Norman you're a star. How lovely it must be to love and be loved so deeply, through everything.
     
  17. JulianneGreen

    JulianneGreen Registered User

    Dec 9, 2004
    23
    Hornchurch
    Norman,

    My mothers AD hasnt really followed the text book. And come to think of it none of the other stories i have read here seam to either! I definetly agree that the christmas thing may well have made her worse. Its a time where everyone want to feal useful, wants to be organsised. A time of family togetherness and memories, sometimes painful ones. And for our loved ones with AD I cant even begin to think how traumatic christmas could be for them. vague fealings and memories that cannot fully be recalled, not being able to be useful, upheaval of routine, people coming and going not always being able to recognise them. an expectation all around to be happy and festive.....well lets face it it must be hard when you didnt even remeber it was christmas day, or someone gives you a gift and you cant for the life of you remeber who they are. I know my mother gets worse at times when things are busy, and there are things to worry about. and i cant imagion it would help anyone with AD.

    Tissues have always been my mothers comfort, and you can just imagion what its like now! They are everwhere, under cusions, in bags, pockets, up sleaves, cuboards, toilet ect ect. I guess its a way of fealing prepaired, a comfort.

    I hope things improve,
     
  18. gladys

    gladys Registered User

    Dec 21, 2004
    13
    usa
    Hello Norman,

    I am so happy to hear that you were blessed with a good day. Your wife is so blessed to have you. You a good man, Norman.

    In my learning curves along the way, I just discovered that if I telephoned my mum and had a short conversation, just as the sun was setting, it somehow lessened the "sun downing" problems and reduced her anxiety of waiting for me to arrive at her house. At least for now it seems to help, but it might prove to be one of those goal posts that keep moving....

    Love,
    Gladys
     
  19. Doreen

    Doreen Registered User

    Dec 3, 2004
    50
    Oldham
    Hello to you all,

    I have read through these posts and can say that Christmas Day threw my husband into a quandry, he was at our youngest daughters with all the family around him, something he always loved, but not this time and the frustration turn to aggression and after dinner I had to fetch him home. We are now nearly a week later and I think i can finally say we are getting back to normal that is as normal as our normal, at the moment he is laughing and talking to the news presenter on the TV, he believes they are his friend.

    Regarding the post about letting AD sufferers helping,I gave that up months age, for the reason that when he couldn't do the simplest thing the frustration set in and then the aggression, and I felt that we could both do without that, when the aggression starts I put on his music and leave the room for a few minutes and fortunately that seems to work.

    Our GP put him on sleeping tablets yesterday and we both got a decent nights sleep, and I knew first thing this morning that Jim had benefited from the rest, I actually showered him without any
    aggression in fact we had laughter and that made it a much easier task.

    Sorry if I have gone on a bit

    Doreen
     
  20. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Doreen

    please go on as much as you like!

    No experiences recounted on TP are anything other than helpful to someone. Different people find that their experiences vary from what others have seen, and they suddenly light up when they see that somebody has 'been there before'.

    Somehow that helps.
     

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