Examples of unusual behaviour that we would love to have input on ...

Discussion in 'I care for a person with dementia' started by claireizz, Apr 23, 2015.

  1. claireizz

    claireizz Registered User

    Jun 1, 2014
    53
    My lovely nan has vascular dementia and does things that my mum and I cannot fathom and we'd love some ideas as to why ....she only uses half a toilet roll and then moves on to the next, stacking them up...she does the same with milk, uses half and then puts it back and opens another. She goes through bottles of mouth wash a week and toilet fluid but hates to be washed and gets very angry if questioned about why she is still in dirty clothes and has not out on fresh ones laid out for her. She is a nightmare to try and get fluid down so is always having water infections...we have tried many things like giving jellies for extra fluid, leaving different bottles directly by her, writing cheeky notes from the grandchildren to remind her to drink....she also loves sweet things so much more than she did and is really putting on weight by sneaking huge spoonfuls of jam etc, and will eat all the food left out for her in quick succession. Mum and I are struggling a bit as we cannot be there all the time as we have jobs and families and neither of us have siblings to help carry the burden. We'd just like to try and understand a few things to try and help her ...we desperately don't want her to go into a home, she would hate it so we are determined to go this alone and have had assessments for aids etc done, and have specialist mental health support but want to fathom these things out if possible ....
     
  2. Charlyparly

    Charlyparly Registered User

    Nov 26, 2006
    221
    Lancashire
    Can't offer any reasons or ideas for this specific behaviour but I'm equally curious and wonder what your Nan says when you ask why there's only ever half a loo roll / bottle of milk etc? :confused:

    Obsessive compulsive tendencies aren't uncommon at all though and some just don't add up or make sense no matter what you do or whichever way you look at things. There'll be a reason for it all of course but whether that's given up easily is another thing!! Some things / behaviour and people will forever remain an absolute enigma despite my best efforts but I personally feel the main, most important thing is weighing up whether the odd or unusual behaviour is unsafe, risky or just a mild annoyance and source of frustration.

    What I would suggest in any case is seeing about getting your Nan assessed by social services who can then arrange for perhaps put some care visits in place - even it's just popping in and making sure she's eaten / taken medication etc. SS can also make further referrals for support from OT's, Telecare and Medication Management which, as well as making sure your Nan is safe at home will put your mind at ease too.

    The poor drinking, fondness for sweet foods and tendency to skip out on mail meals and go straight for dessert is another very common thing but again; pop in visits from carers might help with prompts and encouragement :)
     
  3. claireizz

    claireizz Registered User

    Jun 1, 2014
    53
    Hello...if we question her about why she has done something she immediately becomes very defensive and quite aggressive, and isn't prepared to offer an explanation. i wonder whether it is perhaps an eyesight issue, thinking she has used all of something perhaps ...
     
  4. tinap

    tinap Registered User

    Nov 2, 2014
    41
    west midlands
    I feel for you and your not alone the things you are describing are very common from what I've been told. Mom would have toilet paper everywhere some clean some not so was always cautious when moving it, if you no what I mean. The sweet food craving is also a common thing mom was diabetic and so to begin with it was a worry, but I found she liked custard and bananas and yoghurts which were a little healthier you could also try milkshakes just a couple of ideas. Please make use of any help your offered I never had any until I found TP I was totally at a loss with everything that was happening. Some things there are no answers to and I found it easier to just go with the flow than drive myself mad trying to find reasons, which I did do....... Mom would have excuses aplenty if I questioned anything eyesight, someone else must have i.e moved it used it opened it. I understand you wanting to do everything you can and I admire that I was the same until the last few months but I did manage alone for many years somehow we muddled through but please take any help and support offered its a very long hard road for the person suffering and the one's around.
     
  5. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,161
    Toilet roll and tissue obsessions seem to be common, usually the hoarding of it. (Tearing off, stuffing into drawers, even stuffing down bras.) Sweet tooth cravings likewise. I didn't bother to stop my father stuffing Mr Kipling cakes because I figured at his age I was more concerned about quality of life than quantity and if that's what made him happy, fine. I did, however, get him to eat fruit - 'you can have a third slice of cake if you eat this apple' bartering.
     
  6. canary

    canary Registered User

    Feb 25, 2014
    9,300
    Female
    South coast
    With dementia its no good asking "why?" because they simply cant remember :rolleyes:
    Quite often you just have to accept it. I suspect that your mum uses some milk and then forgets that she has an open bottle and so opens another one. Even though the open bottle might be right next to the one she then opens, they cant "join up the dots"

    Not washing and changing clothes is another problem. I often wonder if its because they cant remember how to do it. Washing is actually quite a complex task with lots of different steps (many more than making a cup of tea for instance) and dressing involves proper sequencing. I once found mum with a pair of yesterdays pants on, then her PJs bottoms, then another pair of pants on over the top, then her trousers on and then she was struggling to get yet another pair of pants on over the top of that lot!!! When faced with the mammoth tasks of washing and dressing, how much easier it is to think "oh, Ill do it later" and then forget. When someone points out that they havent done it the feeling is "of course I have, do you think Im not capable of even washing and dressing?", plus the embarrassment of having someone else to help them. Mum used to complain bitterly about the carers helping her get washed and dressed. She would say "cant I have a bit of privacy? Im not given any dignity at all". On another occasion she got dressed first because she "didnt need any help" and said "do people think I cant do it?" Then she went to the loo and afterwards expressed surprise that she was wearing 3 pairs of knickers!! In the later stages they are often afraid of water on their faces too - perhaps a fear of drowning?

    Mum has developed a sweet tooth too. Ive been told that with dementia you start to lose your ability to taste things and that the ability to taste sweetness lasts the longest.

    With dementia they are trying to make the best of what they have despite the brain shrinkage, so it all makes perfect sense to them at the time, although they cant remember it afterwards and it looks completely bizarre from the outside. I wouldnt worry too much about the reasons though - just go with the flow
     
  7. Tin

    Tin Registered User

    May 18, 2014
    4,829
    UK
    All her adult life she has probably never been questioned about her actions, especially not by her daughter or granddaughter. Don't forget she has been a mother and housewife and still believes she can do all these things. My mum once did the milk thing and when I asked her, she said she likes the cream on top, obviously in her mind going back to the days when full cream milk did have cream at top of the bottle. when she does it now it really is because she can't remember opening a bottle. So much is happening all due to serious memory loss, my mum starts little jobs and just cannot finish them or she gets easily distracted and moves on to another job she thinks needs doing.
     
  8. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,537
    Female
    Auckland...... New Zealand
    Sadly, I think this is the best explanation.
    Like my Mum with moderate Alz..... Mum & Dad live in their own house behind ours.
    We can have all the cars in the driveway, back doors open, washing on our line, music playing, and because Mum can't "see" us she thinks we have gone out.
    When I do go over to see her she says " When did you get home, you never told me you were going out"
    When I say we have been home all day she gets offended, so will have to change my answer next time I think.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    9,300
    Female
    South coast
    Yes, thats so typical Linbrusco. Mum would fall asleep in the afternoon and when she woke up wanted to know what time it was. When I said it was half past three (or whatever) she would assume it was during the night. Er no, Its bright sunshine.... people walking along the road..... children coming home from school....... you are dressed and not in bed.......... but she couldnt join up the dots. To her she had been asleep, therefore it must be night/early morning.
    :rolleyes:
     
  10. claireizz

    claireizz Registered User

    Jun 1, 2014
    53
    Thank you all...I have to admit my mum becomes becomes quite fretful and worried as to why my nan is doing things whereas I am a bit less so, as I realise much of it wont make sense necessarily to anyone but her. My thought is the same, that as their age she may as well have the sweet things if she likes, and as long as she isn't a danger to herself or others, safe, fed and not in pain then I won't worry too much about these little unusual behaviours, and I feel my job is more to love and protect her, and support my mum, as it's often the direct carers that could do with the help more in many ways.
     
  11. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,537
    Female
    Auckland...... New Zealand
    ClaireIzz I am 3 yrs into the dementia journey with Mum.
    I went on a Dementia Carers course in the beginning which was of great help and feel like I need a refresher course :)
    In the beginning I used to worry and fret about every little thing with Mum.
    A big issue for me was actually my Dad. He had no acceptance or understanding of Mums condition, and I was forever playing referee. It wasn't until he was referred to our Memory Team he has been diagnosed with cognitive impairment and therfore his lack of awareness and understanding.
    Even now he will say to me " You know your Mum can't cook anymore" or " I think your Mums forgotten how to make a cup of tea" but he says it in fron of her so it causes many an argument.

    Basically I have had to learn when to switch off when necessary, and let Mum do and say whatever, and to not sweat the small stuff.You will run yourself ragged trying to explain or interpret every little behaviour. Unless my Mums safety is compromised, or I see a sudden decline which might suggest an infection only thats when its time to worry.
    Thats what I tell myself anyway :)
     
  12. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    I find, sometimes, that if I can work out WHY Mil is doing something, it can make it easier to deal with/accept - maybe that's just me, but I think most people do better with an explanation? However, throw dementia in the mix and you also have to accept that sometimes, there just isn't a reason. I sort of understand Mil wanting to carry lots of tissues (she has COPD, so she occasionally gets a little phlemy and also one of her meds apparently can caused an increase in saliva production) so I get the probable reason for the tissues and loo paper being shoved up sleeves, in pockets and even down her bra, in vast quantities - but I have no idea why, just occasionally, she rips off sheet after sheet of loo paper, folds it neatly - and puts it straight into the bathroom bin! I haven't a clue why, for just a few short days, she was compelled to rip off bits of kitchen foil from the roll, and fashion little covers or lids for various items in the kitchen - tomato sauce, tea bag caddy, cooking oil - found all of these and sundry other items wearing a topper of foil :confused: My daughter finally threw away her electric toothbrush, decorated with the faces of 'One Direction', because her Nana had a 'thing' for several weeks, of rubbing the bristles into the soap in the bathroom - Can't fathom that one out either! Ask Mil, even very gently, for an explanation - and she goes straight into 'It wasn't me, I didn't do it' - even if caught in the act. At the moment, I can guarantee that if I check her bedroom drawers, I'll find that she has taken several tenna pads (Thankfully unused) from the packs stored in the bathroom, peeled off the adhesive backing and placed them amongst her socks, tights, nighties and undies, rolled up neatly and with the strips of backing left strewn over her bedroom floor :confused:

    Unless she is doing something 'odd' that causes issues for her (or someone else in the house) I've had to learn to just go with the flow - just have to accept that with this awful illness, there is often no rhyme or reason for some of the things she does :rolleyes:
     
  13. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK
    Ann, the soap had become powdered toothpaste that they had years ago and the pads are the old sanitary towels that were suspended on a string belt?
     
  14. canary

    canary Registered User

    Feb 25, 2014
    9,300
    Female
    South coast
    Re - the foil lids. She would have come from an age when nothing was wasted and any left-over food would be put in a bowl or jar topped with a foil lid (to keep flies etc out) and put in the pantry so that the rest could be used in cooking later on.

    I still do this myself - only its kept in the fridge now :D
     
  15. Rosie56

    Rosie56 Registered User

    Oct 5, 2013
    60
    That rang a bell with me. When I was a kid, my mother had been trained by her mother to keep sanitary towels and tampons out of sight - they weren't even in the toilet, but concealed in her dressing table drawer. Otherwise, men might see them :eek: and that would be a shameful thing. As I got older, from time to time I'd be called upstairs to perform the top secret mission of getting a box of Tampax from her bedroom and passing them through the loo door! Even now that she's living alone I have a struggle to persuade her to stack toilet rolls in the loo: she takes them into the bedroom, hides them there, and of course sooner or later she's caught short. It's the same with Tena pads - they live in a suitcase in the bedroom, never in the most practical place. :rolleyes: I wonder if the Tena pads among the socks are something similar?
     
  16. Senga

    Senga Registered User

    Oct 1, 2013
    17
    My lovely sister who is in a CH insists on writing everything on her pile of paper napkins (not easy and even harder to read!:)). She has about 3 notepads beside her but they remain in pristine condition. I did try asking her why she wont use them but have never received a coherent answer.

    I have learned not to question anything she says and not too try and correct her as it can distress her and what does it really matter. Her poor brain does not need any more confusion going into it.

    I hate this disease.
     
  17. Suziesibb

    Suziesibb Registered User

    Jan 14, 2014
    4
    Questioning in Alzheimers often causes agitation as they don't have the answer.

    If you read the book "Contented Dementia' on many occasions it suggests avoiding asking question of Dementia patients because they don't have the answer. You are also hi lighting their behaviour and possibly their sanity, thus causing them doubt, confusion, agitation and more. Remember, the present is generally a mystery to them and the past much clearer. [Im not an expert but well read as my mother has Alzheimers.]
    Also if the toilet roll and other 'odd' things she does aren't dangerous I wouldn't worry or flag them up. Its all about keeping on a 'green traffic light' [happy] and keeping away from the amber traffic light [agitation]which leads to the red traffic light which must be avoided as this worsens this awful disease. Sorry this doesn't answer your query!
     
  18. Nassfeld59

    Nassfeld59 Registered User

    Mar 14, 2015
    1
    I feel better!

    I am new to this forum but have been caring for my father who has Alzheimer's for over 3 years. He is still at home with twice daily care going in. It's such a relief to read about all the behaviours he exhibits from obsessions with tissue, kitchen roll and toilet paper to wearing multiple layers of clothing and insisting he has had a shower! He really has reached the stage of not being able to join up any dots:(
    Interestingly my 2 children aged 20 and 17 are much better at dealing with his odd behaviours than I am. They just say, 'mum, it doesn't matter' and of course they are right. Someone once told me the golden rule for dealing with dementia was - never ask them a question and never contradict them. So my usual greeting of 'have you had a wash today dad.' He answers 'yes' and I say 'no you haven't the sink/shower is dry' goes straight out of the window!!:)
     
  19. stefania

    stefania Registered User

    Dec 13, 2011
    24
    I haven't been on here for a while as have been busy surviving life! My dad has advanced Dementia and is in a lovely nursing home and my mum is in the early stages and home with me so my whole life is rather dementia orientated.
    I have to try to help my mum understand why the man she married is not there now. We go to the home 4 times a week for about a couple of hours each time. I have learnt to go into my dad's world when I'm with him. He lives in the 1930's approx so it can be difficult. I have researched and try to keep up with things and the playing with things is a very common trait. hiding things again very common it only becomes a problem when you can't find what they've put away.
    I just go with if it keeps them happy then it's good. He is not living in in Society any more so why worry. The extra layers of clothes is mostly because they forgot they've put on the other layers.
    As I said I live in their world and my 2 greyhounds keep me sane as well as giving them both alot of affection. one thing my dad still does is have a giggle with the dogs when they give him a kiss and a nuzzle
     
  20. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    I don't agree fully with the idea of not asking questions. For me, asking questions of my aunt is a way I can perhaps understand better what is going on in her mind. We often have quite lengthy conversations which involve my asking her where, why, how, who etc. and this can lead to some surreal but often quite amusing discussions and anything which lightens the mood is beneficial in my opinion.

    My mum often gets quite irritated listening to us, because it often makes no sense and she's never had a particularly vivid imagination, so I think she gets frustrated as she can't be a part of our bizarre, imaginary world.

    I think it's probably not a good idea to ask questions which might invoke fear, distress or cause an argument, but some questions are fine.
     

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