1. Mazo

    Mazo New member

    Jan 22, 2019
    My wife is 68, has advanced dementia diagnosed 8 years ago, and has been in a care home for 4 years, where I stay with her 4 nights a week.

    She has everythging done for her, cannot talk and does not understand instructions, but is still able to walk slowly, with assitance, and still responds to me, to her carers and to regular visitors. Apart from meals the only activity she has is that she regularly goes out for accompanied walks lasting over an hour.

    Over the last two years, her condition has stablilised with little deterioration and we put this down to keeping her mobile, so mobility is key, as there is little else she can do other than listen to music.

    The current problem is that she tends to suddenly sit down, when there is no chair, particularly when in the tioilet or other confined space, or when she is being dressed – she does not do it while walking.

    Typically ther carers prevent her falling heavily, but the home is increasingly concerned by the risk to the carers and we are meeting to consider the best options for managing the situation.

    The home seeks advice from physiothrapists, but in the past their contribution has not always been very helpful, as they sometimes seem more concerned to enforce the letter of the regulation than to give constructive advice on keeping my wife mobile.

    I am wondering if any others have had similar experiences and I am looking for advice

    1. Techniques to reduce the liklihood of my wife sitting down inappropriately
    2. How to handle it when she does

    Many thanks

  2. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hello @Mazo and welcome to Talking Point.

    Thats a tricky problem. Im guessing that your wife knows that she needs to sit down, but is unable to understand that the chair, toilet, etc is not there. Im not sure how it could be addressed, but there may be others who have come across this.
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @Mazo, welcome from me too.

    I have never come across that problem, nor seen it discusses on the forum. I wonder if it may be worth talking to the experts on the help line to see if they have encountered the situation before. Help line details are
    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm

    It may also be worth trying the Admiral Nurses help line that can be found with this link
  4. Lawson58

    Lawson58 Registered User

    This sounds such a difficult problem, being so unpredictable. Just a thought - could she be having a blood pressure issue? A sudden drop in BP can cause dizziness, even fainting. Hopefully, this has been checked but it all sounds so odd. Let us know when you work it out.
  5. 70smand

    70smand Registered User

    Dec 4, 2011
    Hello Mazo, I’m sorry I have no great advice for you, but my dad used to do exactly the same thing. He had been very mobile until put on medication to calm his aggitation and angry outbursts. The worst thing was that although he didn’t hurt himself when he sat, he could not coordinate getting back up and needed hoisting off the floor. He had very poor perception and sometimes miscalculated where the chair was, or would sit on a table or someone else’s lap, but the sudden sitting down definitely started with commencing the drug olanzapine. It did improve when the dose was reduced but gradually his mobility deteriorated and the staff at his care home used to hoist or wheelchair him despite my mum and I trying to keep him mobile. They were understandably worried about him falling that they stopped walking him and he seemed to forget how to.
    I would have thought the best way to keep someone mobile would be to keep them walking with someone pushing a wheelchair behind them in case they decided to sit down. The staff were always surprised that mum and I could get dad to walk and just it took extra time and patience with someone behind with a wheelchair.
    The best advice I can give is to insist they keep walking your wife if she is happy to walk, with someone pushing a wheelchair behind if she suddenly decides to sit. And they should do this several times a day. My dad sadly became wheelchair bound as he deteriorated and it accelerated during a two week period when the care home closed to visitors due to a scabies outbreak. My mum visits daily and was allowed to keep visiting but they wouldn’t let her walk dad as there were several incidents where he sat on the floor, which they classed as a fall, but it was a gentle lowering himself to the ground.
    The manager suggested a physio referral and maybe a frame , which would have been a waste of time because he could not take instruction and would never be able to use a frame.
    Ask for regular walking to be put in your wife’s care plan, we should have insisted but it was quicker and easier for them to hoist and wheelchair him.
    I wish you all the best x
  6. Mazo

    Mazo New member

    Jan 22, 2019
    Thank you all for your kind and helpful responses. It is obviously fairly rare and I was particularly interested that it may be caused by drugs, so I will look into this. I am also seeking professional advice and will let you know how it goes

  7. Louise7

    Louise7 Registered User

    Mar 25, 2016
    Just to add that my Mum also started doing this following a change of medication - which had dizziness as a potential side effect - so it's definitely worth considering this as a cause.
  8. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    This is something my husband did regularly.

    He lost the ability to judge the proximity to items to himself (spatial awareness). this happened as the disease progressed and, in our case, was not down to medication.

    Basically, my husband would see a chair or toilet and try to sit on it - the problem was that it might be on the other side of the room, but his visual perception was be that it was right by him.

    All I could do was be by his side whenever he was up and walking and if I saw him starting to sit on a chair that wasn't there, I would have to gently take his arm and guide him to a safe sitting area, whether it be the toilet or an armchair. Fortunately, in the house, we were seldom far from something to sit on - and it never happened when we were out walking outdoors, thank goodness.

    The other thing that happened was that he became unaware if anybody was already sitting in a chair, so there were many occasions when I got sat on, or I had to stop him sitting on someone else, whether in the house or in a public area like a doctor's waiting room.

    On the occasions when I could not steer him to a safe place I had no option other than to gently assist/support him in to a guided sitting position on the floor, so that he didn't just fall down and hurt himself.

    That of course brought its own problems because then he could not get back up again without help (he was 6ft 2 and I am 5ft 2, so it was a struggle for me). Sometimes I managed alone, sometimes my son was around to help - but at other times, I had to get outside help as he would grow quite distressed.

    There were a couple of times when he had to go into a secure unit for a while, due to other issues. I soon saw that my husband's problems with sitting were not rare - including sitting on other people already sitting in a chair.

    The staff took the same approach as I had in that, if they got there quick enough, they would guide the person to a safe seat - or alternatively guide them gently to the floor in a controlled way, so thet didn't hurt themselves.

    I am sorry that I do not have any more specific answers to the problem, but maybe it helps a little to know that it is something experienced by others too.
  9. Mazo

    Mazo New member

    Jan 22, 2019
    Sometimes she does have low blood pressure and or low pulse when she seems a bit weak - do you know if sudden drops in blood pressure are related to dementia? Mazo
  10. Lawson58

    Lawson58 Registered User

    I don't think that low blood pressure and dementia are necessarily connected but quite often people with dementia have more than one condition at the same time.

    My husband has had heart problems for many years and has always had low blood pressure. At times he can feel quite dizzy and our GP is sure that it is because his blood pressure drops a bit more quite suddenly. It happens quite often when he stands up. He can walk around OK without having any problems.

    I hope you get this sorted as it must be very worrying for you.

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