1. Lulu

    Lulu Registered User

    Nov 28, 2004
    I have been reading about 'sundowning'. My Mum is showing signs of being quite agitated in the evenings -dithery, worried, hand-wringing, feeling cold (though she's warm). Could this be sundowning? It's all quite low-key, subtle .... Does this tend to start quite early on in the disease?
  2. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    it varies with people,the signs that you describe are typical,but the classic is "are we going home now"?
  3. barraf

    barraf Registered User

    Mar 27, 2004
    Dear Lulu

    Norman is right as he usually is, you can't pin it down to early or late stages or to particular people, also the symptoms vary.

    Margaret didn't start until five years after diagnosis but now we get it just about every evening, I think it is definately worse in winter when the days are so short.

    Like your mum she is restless and agitated and I can't convince her that she is at home, she is always wanting to go home. Only tonight she asked me who I was, and swore blind I wasn't her husband.

    I did raise the subject with the specialist when we saw him at the begining of the month but he didn't seem to attach much importance to it.

    You just have to ride with the flow and try and change the subject. (My words not his.)

    Not much help I'm afraid but at least you know you are not on your own,

    Cheers Barraf
  4. May

    May Registered User

    Oct 15, 2005
    Hi Lulu
    My Mum is going thro' a bad patch of 'sundowning' at the moment, we've only had two evenings in the past month free of it.. She asks to go home, (this seems to be a common denominator, I didn't realise that) doesn't recognise my Dad(they've been married 55 yrs) and asks where he is, sometimes doesn't recognise me. She accuses us of keeping her a prisoner and wants to go out, and is generally very agitated,stressed and upset. This came on at the change of BST the end of last year.It usually takes us 3 to 4 hrs to sit out the traumas, and every attack is different in the way we have to cope with it. She wasn't diagnosed until late last year, so it seems different in every patient. The CPN has had the doctor prescribe Promazine, which sometimes keeps her more calm but at others seems to make no difference. I agree with Barraf, the professionals don't seem to attach much importance to it, but in my eyes this is the thing that I see doing the most damage to my Dad as he is constantly'walking on eggshells' and it takes it's toll.
    The only thing I can recommend is don't take anything to heart that's said in one of these phases, try to stay calm and act normal , not easy I know.

    Hang on in there, your not on your own.
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hi Lulu

    I can only agree with the other posts, my Mum started to suffer these symptoms early on, stelazine has helped to lessen the agitation, but three years later, she still sometimes has an episode.

    They are frightening for the sufferer and draining on the carer. I wish I could be more help, but you are not alone.

  6. Lulu

    Lulu Registered User

    Nov 28, 2004
    No, Mum knows who everyone is and has never mentioned wanting to go home -although apparently she has been telling a neighbour that she won't be living there much longer as she's going back to her home town. Thinking about it, she doesn't say very much at all, just reacts to what we say to her. If she has a pain, I know she finds it hard to tell us what the problem is, so when she is agitated and 'dithery' in the evenings, she can't explain to me what the problem is. I don't know what to think anymore -just know she's not as good as she was.

    I was helping her to sort out her cupboards yesterday -she couldn't cope at all. From the start she had to go and sit down as she had a headache, and 2 hours later (having fallen asleep in the chair), when the job was all done, she got up and carried on as normal! The slightest stress and she can't manage anymore. I came across her recipe folder -dishes I recognised from childhood, when she used to look after us, made sure we were warm and well-fed. Here we are now in this situation. I can't believe it sometimes.
  7. Charlie

    Charlie Registered User

    Apr 1, 2003
    Hi Lulu,

    Dad had 'sundowning' early on. Having studied is behaviour over the last few years I notice that his sundowning starts normally in the evening OR when he is very tired (e.g. been through a stressfull time meeting lots of people). It is as if his brain has had enough and needs to rest for while, but he is unable to relax, hence the aggitation. As Norman says - everyone is different.

  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    with Jan, her sundowning began around 3pm, and it just happened. Perhaps boredom because it was impossible to keep her fully occupied and her perhaps feeling of "oh well, nothing to be done here, so I'd better get home before dark, my parents will be worried about me being with a strange man"
  9. rummy

    rummy Registered User

    Jul 15, 2005
    My Mom gets up at 3am every night and just sits in the living room on the couch. The two times my Dad was in the hospital and we stayed with her she came into the guest room where my husbandand I were sleeping and flipped on the light in the middle of the night, scaring us half to death! In the night she will also go from door to door opening and closing them like she is curious what is in there.
    I have found that giving her an antianxiety drug (alprazolam) is very helpful in settling her down when she gets overwrought. Dad goes back to the hospital for an overnight test next week and I will be giving her one before bedtime in hopes it will help.
  10. JamesR

    JamesR Registered User

    Dec 6, 2005
    Interesting what u say Rummy...staying at my parents i want to disable the handle on the guest room door as at various points in the night she comes in to the room or turns the light on...or at about 7am throws something like a towel at u in the bed....

    I sleep very badly at my parents as a result...
  11. rummy

    rummy Registered User

    Jul 15, 2005
    Hi James,
    I will be going through this again on THursday and I plan to give her a pill before bed time ! I'll let you know if there is any difference in her behavior. Does anyone have any experience with medicating for sundowning???

  12. Tressa

    Tressa Registered User

    May 18, 2004
    N. Ireland
    Hi Rummy,

    we are in the process of starting medication for some of the symptons of sundowning. My mum gets very agitated in the afternoons, just wanting to get out to go to the shops. I can't cover looking after her 24 hours a day so unfortunately she is getting to do her own thing in the afternoon, most of my sisters dont work in the afternoons but you know, these busy schedules blah blah blah, so it was suggested medicating mum to stop/control the agitation. I have read absolute horror stories about the type of medication they use for this and have had to come to a compromise with the consultant over it. I keep putting off giving her the tablets as I just dont feel well about it. Is it really going to benefit my mum or is it because the rest of the family can't be bothered and this is the easy solution, I dont know. I think its down to the individual as to what they decide, medicate or don't medicate. I am struggling to deal with the guilt in deciding against my gut feeling to try it. The trial starts this weekend as I can be there all weekend to see how she copes on them and that there aren't any nasty side effects. But all the information I have read has said that they either should never be used on elderly patients with dementia or only as a last resort.

    Dont know if I have helped you but I will let you know next week how my mum got on.


  13. rummy

    rummy Registered User

    Jul 15, 2005
    Thanks Theresa,
    Keep me posted on how it goes and I will let you know if I have any success on Thursday !

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