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Restlessness and keeping occupied

Discussion in 'ARCHIVE FORUM: Support discussions' started by Charlie, Jul 4, 2004.

  1. Charlie

    Charlie Registered User

    Apr 1, 2003
    161
    Hi All,

    I know these subjects have been mentioned before but we could really do with a bit of advice on dealing with my fathers restlessness.

    It is becoming increasingly difficult to keep dad occupied. He has started wandering around the house in the day constantly and I mean the whole day sometimes. The things that used to give mum a break no longer interest dad and it is impossible to keep him occupied with anything for more than a few minutes. TV and Music do not interest dad at all, he just can't concentrate.

    He has taken to obsessively moving things around the house 'compartmentalising' everything it seems. Moving bits of the rubbish bit to one place, hiding books in another. Folding everything in the process. Ask you can imagine this drives my poor mum to distraction. When he's not doing this he wanders from room to room all the time. This has been happening constantly for the last couple of days. Consequently dad falls asleep early, which means a very very early rise. All exhausting.

    It tears you apart watching him sometimes, as you know that deep down dad is just bored and wants to do something, he just cannot concentrate. It is just too much to expect mum to spend every waking moment keeping dad occupied.

    I guess that we have three questions really:

    1. Does anyone know what causes this restlessness? It seems to be a recent progression, a kind of compulsive obsessive disorder?

    2. Will this come and go or is the new progression here to stay. I appreciate that everyone's progression is different, but am interestd in others experiences.

    3. Are we really fighting a lost cause, trying to find anything that will keep dad occupied for a reasonable period of time?

    As Eoyer would say, thanks for listening.
    Charlie......
     
  2. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Hi Charlie

    probably not what you want to hear - but I could never do enough in the day to keep Mum occupied. I think it must be something to do with lack of short term memory. I am convinced Mum forgot what she had been doing on a half hourly basis. I've mentioned before that I could have planned activities all day yet still in the evening the reslessness came back. I turned to looking for coping mechanisms for myelf realising that I could never do enough for Mum. Eventually I tried to ignore the sighs and protestations of boredom.

    regards Geraldine
     
  3. Annley

    Annley Registered User

    Jun 30, 2004
    8
    Hi, my dad is just the same, only when he wanders he wants to get out of the house. When we take him out of the house, he wants to go back, and so on, and so on, from first thing in the morning until last thing. At night he is absolutely exhausted, and so are we. The hospital have prescribed him sedatives, but it is hard to get the right balance. Not enough sedation makes little difference to his restlessness, and too much makes him sleep too much and causes incontinence. They say that in time they will be able to help but in the meantime, it is a real struggle. They said if it was too much for mum, the only thing they could do was to admit him to hospital, and that it would take them between 2 - 6 weeks to stabilise him. Not much of help, but I know what you are going through. annley
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I don't think it is boredom, actually, this constant moving and organising of things.

    My own feeling is that it is because they are faced with a world they can relate to less and less, and over which there is increasingly less control - and which they can't understand any more. There is also a feeling that others are taking their things from them.

    Accordingly, they find things they CAN control. Ornaments, bits of toilet paper, books, even quite large items of furniture - they can grasp these, feel they are their own. This becomes, for a time, their new role. Things can be organised - even protected from those who might steal them. Because of the fears, and of the effects of short term memory loss, this just becomes a compulsive endeavour.

    Ultimately this will reduce or even stop entirely, as the disease progresses. Perversely you may wish to be back where you are now when that happens.

    I could find nothing to distract Jan for any period of time at all, so for me at least, that was a lost cause.
     
  5. Jude

    Jude Registered User

    Dear Charlie,

    You're fighting a losing battle with this one I'm afraid.

    Both my parents have AD and trying to keep them both entertained for any length of time is a wearying and depressing occupation when they get into the 'restless routine' You will drive yourself crazy trying to prevent it. My advice would be to just let them be and don't try and stop the compulsive habits, as they seem to become more agitated if restrained. My father routinely rearranges his underwear and sock drawers daily . My mother dissects toilet rolls and tissues with a vengeance.

    It doesn't happen all the time during the day, but when it does I just grin and bear it. Things can always be put away in their usual places afterwards and toilet rolls get recyled into smaller pieces. For a while my mother was equalling the national debt of Bolivia in toilet roll consumption...! She seems to have calmed down a bit now.

    They always seem to be more agitated in the mornings, so I try to take them out for walks or drives in the car at that time. I also make sure that they have enough to eat for breakfast and morning coffee, as that seems to curb their desire to compulsively rearrange things. By the afternoons, they seem to calm down and are quite happy to sit down and watch a video or read the newspapers.

    Food plays a VERY important part in their daily routine. For some reason, even if they don't know what day or time it is, they always are right on cue for breakfast at 8am, coffee and 10 and lunch at 12.30 right to the minute...!! So I've found that a regimented routine of meals and snacks is very important and helps their [and my] anxiety levels tremendously. Fruit snacks seem to be the best - grapes and citrus in particular, as well as decaffinated coffee and milky cocoa before bedtime. Obviously this will depend upon allergies or diabetic conditions, but I'm fortunate that my parents are physically incredibly fit.

    I thought these symptoms were born of boredom initially, but I do agree with Bruce that it's more like agitiation and a need to grasp and hold onto familiar items that they feel may be stolen.

    I do hope this has been helpful.

    Jude
     
  6. Suzy R

    Suzy R Registered User

    Jul 4, 2004
    40
    Switzerland
    I agree with the protection theory. My mother spends a lot of time sorting and re-sorting her now bursting handbag. This she even takes into bed with her so that we can't remove any of the items (bills mostly !) which she has 'collected'.
     
  7. Charlie

    Charlie Registered User

    Apr 1, 2003
    161
    #7 Charlie, Jul 5, 2004
    Last edited: Jul 5, 2004
    Thanks so much for everyones replies and thanks for being so honest.

    I'll print this thread off to show my mum this weekend so she has more idea about what is happening to dad at the moment. As you say these reactions are very frustrating but relatively harmless.

    Dad always seems to be trying to keep his 'grasp' on things and deep down this causes him a lot of frustration. I guess a reaction like this was inevitable. Phew, this is one hell of a journey!

    Again, thanks
    Charlie....
     
  8. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    My Mum has just been assessed re Dementia. I have been caring for her for some time now but looking at the above postings I wonder if I am strong enough to carry on.
    I am so tired myself and sometimes it is hard not to "snap" when my mum says or does something exhasperating tho trivial.
    Sorry about spellings but pretty tired tonight.
    regards to all
     
  9. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Snuffyuk
    I did tell you you would get plenty of chat!!!
    My wife has been on Aricept now for 7 years,we had to pay for them before they became available on the NHS.
    Even after all this time she claims that there is nothing wrong with her and does not need any help,she sometimes tells me she is fed up with me and why don't I clear off she can manage.
    Like a lot of other carers I have learned to accept the situation knowing that this is the AD and not my wife talking.
    Your mum's reactions sound like the ones experienced by many of us.
    Very best wishes
    Norman
     
  10. Jude

    Jude Registered User

    Dear Snuffyuk,

    Norm's point about it being the 'AD talking and not your Mum' is something that you need to keep right in the front of your mind all the time.

    My father quite regularly talks about me in the third person to my mother in front of me. He has variously suggested that I am trying to poison them at mealtimes, stealing all their money and their underwear and going to throw them out on the street at midnight. Some of this is so ludicrous that I have to maintain a straight face. Other comments are incredibly hurtful unless I remind myself that it's not actually my father saying these things.

    I'm sure that many of these awful statements are caused by his anxiety at not being in control of his life any more, so there's no point me getting paranoid thinking that he actually means it. One of us has got to stay reasonably sane after all........

    Now that your mother has a firm diagnosis, perhaps you could find a carer to help you, if you haven't already done so. This gives you a break in the daytime and also gives you somebody 'normal' to talk to. I wonder if you've ever seen 'One Flew Over the Cuckoo's Nest' but some days, I feel like I'm living on this filmset! This website is really invaluable for letting off steam too, so use it as much as you possibly can. We are all in the same boat here and if you feel like letting rip, then do it. You'll always get an answer - even at 2am.


    One other useful thing is to remember to try to back down before an argument starts about something trivial. [Does it really matter if my father has just started to insist that his walking shoes have always lived under the kitchen table instead of in the cupboard - I can always put them away afterwards - having a battle about this is just not worth the effort. That's just a small example.]

    This week my mother has decided that all of her underwear is now in my father's chest of drawers. Yesterday afternoon she came out wearing a pair of his Y-fronts over her trousers - this is her 'superman' outfit presumably. I didn't realise until she went to the loo that she'd put on 4 pairs underneath as well....!! I was pretty impressed that she'd managed to undress by herself to do this. These are the funny situations that make caring for somebody really worthwhile because you can laugh about it by yourself later on.

    Caring for people with AD is time consuming, tedious, frustrating and sad, but it can also be incredibly amusing. I'm trying to cope by ignoring the daily grind and concentrating on the humour. Mostly I succeed.

    Sleep is one major thing of which we carers never seem to get enough. See if you can grab a nap after lunch and go to bed a bit earlier, depending upon when your mother sleeps. That way
    you can make a bit of time up here and there. If you need help from family or need respite, then ASK for it - you can't possibly do everything everyday by yourself.

    Jude
     

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