Sundowning - What Is The Definition?

Discussion in 'I care for a person with dementia' started by Suzanna1969, May 9, 2015.

  1. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    #1 Suzanna1969, May 9, 2015
    Last edited: May 9, 2015
    Mum (80) is having a bad time most mornings. It ranges between being a bit tearful and sobbing inconsolably for hours. It starts when she gets up and is a huge strain on my Dad who is dealing with Vascular Parkinsonism. Occasionally she is right as ninepence but this is rare.

    When asked what is wrong she can't respond but, as she has some awareness of what is happening to her, I can only think it's fear (and I can't blame her either) and general confusion. She said to me once between sobs 'I'm going mad aren't I?' It was horrendous.

    After reading here I deduced that, despite the timing, her weeping is probably Sundowning. I mentioned it at the Memory Clinic appointment to the Dementia Practitioner who seemed doubtful BUT admitted she is not medically trained (and actually I'm not sure she is actually qualified to do what she is doing as she ran the Cognitive Thinking Course Mum attended last year and admitted that she had been 'shunted' during recent changes) so said she would refer it to the next meeting and request suitable medication.

    So does this sound like 'sundowning' to you guys? It's so distressing for my Dad (87) because, like me, he is a very logical person and finds it hard to deal with someone who doesn't respond to logic. I am concerned about the effect on him as it must be so wearing but he won't allow me to stay for any length of time and gets upset if I get there in the early mornings as he feels I should 'have better things to do at your age' (I am 46 next week!) and keeps telling me to go and 'do the things you need to do'.

    I do find I can distract her sometimes so that she forgets to cry but could medication help? And can anyone have more advice for this horrible situation?
  2. lin1

    lin1 Registered User

    Jan 14, 2010
    East Kent
    Hi Suzanna. It is so awful isn't it.

    In reality Sundowning can happen at any time of the day or night and can be regular, I could set my watch by when mum's started.

    TBH this doesn't sound like Sundowning to me, I am no medic so I could be wrong.
    My gut instinct is, that Your Mum is suffering from Depression. It does sound like your Mum may be more aware in the mornings.
    I would speak to one of Mum's DR's about the possibility of Mum being Depressed even if Mum is already on Anti D's as they may need to be changed.

    When my Mum was Sundowning , she became very agitated, angry , aggressive and stormed around a lot. she never cried or seemed to have any awareness that something was wrong with her, in fact it was quite the opposite, she was fine, we were the ones who weren't

    When Mum was Depressed, she was just like you say your mum is.
  3. di65

    di65 Registered User

    Feb 28, 2013
    new zealand
    Hi Suzanna

    TBH I think that Sundowning CAN happen at any time during the day. Just like "morning" sickness can happen 24/7 in some cases. My husband starts every day at 2pm and continues to about 7pm when he announces that it is bedtime - hurry up and get ready!!!
    I do sympathise with you, but please get a definitive diagnosis, as it may be something else, which could be easily regulated with medication :)
  4. Spamar

    Spamar Registered User

    Oct 5, 2013
    Hi Suzanna,
    Feel for your dad! Logic is one of the first things lost, apparently, and in the early days I remember saying to OH ' how can you say that, it's not logical, and you're one of the most logical people I know!' Dad will gave to try and remember that logic doesn't count any more. Difficult, I know, but it can be done.
    However, I think dad is having a problem with the possible diagnosis, as he doesn't want you to see mum at her worst. That is a whole different problem!
  5. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    Well the dementia practitioner sent a psychologist round to see my Mum. She turned up at 10am which is usually when Mum is at her worst. She was tearful but, because she is still the person she is, she tried to laugh and joke and put on a brave face. The psychologist rang me afterwards and said that she had seen through this and realised my Mum was very upset and that there are distraction techniques that she tried that could work. I replied, through gritted teeth, that I had tried those and although they sometimes worked my Dad wasn't able to cope in the same way.

    She then suggested that she could send my Dad on a 'Dementia Awareness Course' to help him deal with her condition better!

    For one thing, my Dad DID the Dementia Carer's Course last year and all they did was go over the physiological stuff using a flip chart and loads of long words and confusing diagrams. The room was warm and he usually fell asleep.

    Secondly, he is NEARLY 88 AND CAN HARDLY WALK NOW!!!!!

    I pointed this out, managing not to use a single swearword, and asked what medication might be able to help. She replied that recommending medication went against what her remit is and what she stands for.


    So I took a different tack and said that I was concerned that Dad was being worn down by it and that it was taking a toll on his health. If they were both 20 years younger then yes, maybe, but my priority is that Dad's last years/months are as stress free as possible and therefore medication, IF it works, is really the only solution at this stage.

    Finally she agreed with me and said she'd present her findings at the next meeting and let me know the outcome. Still waiting...

    In the meantime Mum has had a couple of 'accidents', one after visiting the Over 60s Club (luckily I was there to clean her up) and one on the morning of the psychologist's visit (when I wasn't but it was less dramatic) and I am concerned that this is a sign of things to come.

    Grim grim grim but I read other people's posts and think I actually have it easy - for now.

    I just wish the NHS would act in the best interests of individuals rather than blindly follow protocol and flippin' 'guidelines' which actually cause me more problems. If the dementia service isn't going to prescribe meds for Mum I might just tell them to do one because it's the only thing I have asked them for and they can actually help with at the moment. They used to be brilliant but they've really let us down of late as have the departments who were supposed to be 'helping' my Dad.
  6. Tin

    Tin Registered User

    May 18, 2014
    Slightly different, but in the same 'ball park'. About 2 months ago, my mum fell backwards and hurt her shoulder. I rang surgery and they told me mum's gp was in our village and would call in, she did and a couple of days later x-rays just to make sure nothing broken - all fine. All agreed that this fall was due to back arching and probably her Dementia. A few weeks pass and out of the blue mum gets a letter from our local community hospital that an appointment has been made for her at the 'Integrated Medicine Clinic' !??? Confused by this I rang to find out what it all means, apparently they want to see if they can help her avoid falls and maybe give her a few exercises to help keep her Straight and steady. I told them she is 81 and has dementia and that she cannot follow simple instructions, they didn't know this. Why I'm taking her I don't know as it seems like a waste of time and NHs funds, but I will take her, just to see what exactly they want her to do.
  7. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    Auckland...... New Zealand
    Hi Suzanna, I'm sorry to hear about your Mum.
    My Mums (74) sundowning presents from 4pm till bed time, but is general confusion and agitation asking questions over and over about her parents, her siblings, who is dead, what did they die of. The only time she is not as bad is if there is some kind of dancing or singing programme on TV. She is at a moderate stage of AD.

    Like your Dad, mine (77) just doesn't get Alzheimers at all.
    This is despite visits from our Alz Key worker, literature to read , and many talks myself with Dad.
    In Dads case though he has been diagnsoed with cognitive impairment, and partly the reason why. The other part is is his bloody mindedness and abrasive personality :rolleyes:
    He does however hide, how bad Mum might be, but as they live in their own house behind ours I can keep a close eye on the pair of them.

    Our Key Worker also suggested Dad go on a Carers Course.
    There is no way he would do this least it interefered with his TV watching :rolleyes:
    I went on it which was a 2 hrs course over 4 weeks.
    My sister and I both agreed that Dad would not sit through presentations, slide shows, flip charts, and group discussions.
  8. topsy1

    topsy1 Registered User

    Apr 22, 2014
    You have my sympathies, your Dad must be worn out by what is happening with your mum and I understand your wish to keep him in good nick for as long as possible. Do you get on well enough with your GP to ask them for an anti-anxiety tablet just so your mum (and the rest of you) have a less stressful time of it in the mornings? The first one prescribed for my own mum did not do the trick but I went back to the GP and got a different tablet which calmed everything down. Had to take her to the psychiatrist for the elderly to confirm she was on the correct dosage, but we got the tablets first and were referred after... Hope things get better for your mum soon.
  9. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    Got a call from the Dementia Service yesterday wanting to make an appointment for Mum to see the doctor, with a view to discussing medication.

    Seeing as this has been dragging on for weeks now with no resolution in sight I was pleased that FINALLY we might be getting somewhere. The morning weeping has got so much worse and is almost every day for hours. My poor Dad is being worn down by it and he's having to cope with his own condition too, obviously the medication will take a few weeks at least to take effect and they might not get it right first time...

    ...So when I was offered an appointment in 3 weeks' time you can imagine I wasn't best pleased!

    (Obviously I didn't take it out on the poor receptionist who rang me, but I did explain the reasons why I wasn't going to accept anything other than 'within the next week' and actually she responded really well)

    So we are seeing the doctor tomorrow. Taking Dad too so they can see how frail he is and how damaging this situation is for him as well as Mum.

    And I am NOT going to be fobbed off again. :mad: (I think we need more smileys, this one just isn't angry enough!)
  10. stefania

    stefania Registered User

    Dec 13, 2011
    extended sundowner

    my dad has gone from being an evening sundowner to an all night til about 5-6 in the morning. He has been in a nursing home for 2 yrs now and thank goodness because there is no way we could cope at home. He hasn't slept in a bed for longer than that. we have all tried to keep him awake to change him around but impossible.
  11. Fairycarter

    Fairycarter Registered User

    May 6, 2014
    Hi Suzanna, my mum has 'sundowners' between 4 and 7 pm, she gets the carers to call me and then she shouts abuse at me telling me I am a wicked daughter and I am to come and get her directly to take her home. It is very hard not to loose my temper with her but the carers tell me that after she has spoken to me she is like a little lamb and very happy. I thought the reasoning behind the words 'sundowners' is that it happens mainly in the afternoon and evening. I hope you get some help for you mum and dad. X
  12. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    I think it's confusing to use a term, 'sundowning', which clearly suggests a time of day, for behaviour that can occur at any time of the day or night. I can see how it has happened but that doesn't stop it being confusing.

    Well done for being assertive Suzanna. Hope the appointment leads to some real help.
  13. Daddygee

    Daddygee Registered User

    Jan 12, 2015
    West Sussex
    Hi my wife suffers from parkinsons dementia and it was suggested by her psychiatrist that she had sundowners which is a priod of restlessness from around 5pm until late evening when she becomes agitated and is wandering around allover the house.It was suggested to try and divert this energy into an meanful activity such as washing up or helping do a crossword or jigsaw.We have had some moderate success with this.
    Hope this helps.
  14. soppysassy

    soppysassy Registered User

    Jul 25, 2012
    Hi, I have not heard of Sundowning but I have had my mother-in-law on the phone to me sobbing saying she did not know what to do and she kept saying she was sorry over and over again. It was so distressing but she does suffer from depression and anxiety. It turned out she had not been taking her medication (sertraline every day which is an anti depressant) so we now have a paid carer going in each day to give her the medication and she has been better. You do need to speak with someone who can help you medically as your poor mother needs help. It is a daily struggle.
  15. Fife

    Fife Registered User

    May 21, 2015

    I have never new about sundowning, my Husband gets very agitated, punches, kicks and holds a conversation while he is sleeping. He has VaD for five years and what happens in his sleep has just started in the last year. I don't know if anyone else has noticed this with the person they care for, just wonder how bad it's going to get in the next years.

  16. little shettie

    little shettie Registered User

    Nov 10, 2009
    Well done Susanna, you were absolutely right to be assertive. The whole system needs a massive shake up. Since my mum was diagnosed with AZ about 6 years ago, the only way I could get any help or anything done was to complain and be assertive! I feel so so sorry for the poor people who cannot do so. No wonder so many fall by the wayside. My mum was put on citalopram once we lost Dad which was 2 years ago. Dad could no longer cope with mums outbursts, he just didn't understand that it was the illness making mum nasty and he fought back. Was like WW3 at times! Mum could not live alone once he died, so we sold her house and hubby and I bought a bungalow and she lives with us. Not easy, but we've got into some sort of routine. First thing I did was visit new gp about her meds and she put mum on a higher dose citalopram which made a huge difference to her mood swings. No more tears, or anger, she was so good. But things are taking a bit of a nosedive again but of course as the dementia progresses, so these things develop. Its a regular cycle with mum, we have her 'almost' normal for some time, then we have the wandering around all night, then we have the depression and tears, then the anger sheer bloody mindedness and then it starts all over again! I have noted that these cycles are coming around much quicker now and the moods are lasting longer. Not sure where to go from here. Mums on Aricept as well and it has served her well. Mind you, typical that the gp upped mums dose of citalopram, then when we saw the psychiatrist, he was cross and said people over 65 should not be on high dose anti depressants!!! Honestly, what are you supposed to do?!! told him straight mums mood had improved dramatically and I was keeping her on them!! Shes 94 and physically in good condition though she is less mobile than she used to be as shes very demotivated. I do try but all she wants is dad back and that I cannot do.:mad:
  17. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    It isn't necessarily the case that this kind of behaviour will get worse in the future. People do sometimes become calmer or at least less inclined to become agitated as the condition progresses. Nothing with dementia is completely predictable - except that we know how it ends.
  18. Dayperson

    Dayperson Registered User

    Feb 18, 2015
    I've vaguely heard of sun downing and I think mum has that now because she will wake dad up at 3am in the morning, then take an hour to be up and about, then she will get up at 6am. It disturbs dad who can't get a good nights sleep and she wakes me up when she goes down in the morning. She doesn't respect that I may be asleep and move quietly like she used to do. Then she will fall asleep during the day and I wonder whether to let her sleep or keep her awake.
  19. Treacle Tart

    Treacle Tart Registered User

    Oct 24, 2014
    Mum diagnosed Dementia nearly 18 months now. Not sure about Sundowning as Mum can feel upset, tearful, anxious, at anytime but more likely when waking. Had a visit from Clinical Nurse for first assessment who recommended Mum be put on 50mg Sertraline, to be taken before going to bed. Took a few weeks to get into system but Mum did seem more relaxed. Around three months ago noticed Mum being more confused, wandering at night (she can't escape the flat so is safe) and as she is deaf making one hell of a racket moving things and shutting doors which woke up Dad (91 with Prostrate Cancer) breaking his sleep. I had a referral from GP again for Clinic assessment and same Nurse came to see her. Mum had deteriorated from last assessment, was concerned about her waking and slurred speech. She said she would take the assessment back to speak with consultant about putting Mum on Donepezil and maybe increasing the Sertraline to 100mg. After a week she got back to us saying it had been agreed, prescription with GP to be picked up and that any problems contact her or she will contact us for a monthly check. Mum after two days became very argumentative with Dad - pushing him into the coat cupboard and leaning on it, luckily he still had his mobile phone on him so he was able to call me. Then I got another call from Dad saying she had her bag ready, was in her nightie but ordering him to let her go home, even banging on kitchen window for help. I went straight up there and managed to calm her showing her a memory book 'Doreen and Leslie Now and Then' I had made. Dad was absolutely knackered come Monday - I called the Clinical Nurse and told her that I had reduced the Sertraline back to 50mg as I thought it too much of an increase on top of the new medication. Since Mum has seemed much happier, she is sleeping better and not wandering and is enjoying her meals again. Only one draw back she tends now to get 'wind' and has a couple of times not been able to hold herself - Dad and I went through her diet and came to the conclusion that it was the Sunday porridge and sweet corn. Since removing these it has not been too bad. One thing we did find out is that Grapefruit is out, you can not mix Sertraline with Grapefruit.
  20. Bill Owen

    Bill Owen Registered User

    Feb 17, 2014
    Lewy body

    hi. Im bill baer with me im dislix . My wife has lewy body. She crys most morning for some time . Dose not know whats going on.need to be feed . She has now had lewy body for about 3 to 4 years.and geting worse .took my wife to see metel doc sorry.only to dinoise l/b . Medication she is on .thiamine/velafaxine/vitamin b/aripiprazole/clonazepam/diazepam/ferrous/mirtazapine/rivastigmine/ this dose not mean that its rigth for you mam .but ask about them

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