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Help don’t know what to do for the best

Discussion in 'Welcome and how to use Dementia Talking Point' started by JulietLew, May 20, 2019.

  1. JulietLew

    JulietLew Registered User

    Feb 23, 2015
    3
    Newport
    My partner was diagnosed quite a while ago with mixed dementia and he continued to live on his own with my support. But I then needed to move into his house to care for him amongst the hoarding and poor state of repair. Plus stairs which suffering from Ehlers-Danlos Syndrome which has a multitude of problems including constant pain and problems moving. I coped there for 4 months until I managed to move us into a single story bungalow. In his former home he wasn’t able to enjoy the garden as it was a cluttered disordered mess which I think he found too overwhelming to deal with despite being of his own making over many years. The garden where we are now is just a mound of earth, with obvious possibilities. However, doing anything out there seems to be a trigger for my partner’s augmentative, unreasonable and nasty side to emerge. The first time it happened it really unnerved me as he was physically abusive and didn’t seem to appreciate my distress. I rang Alzheimer’s helpline and they said to get somewhere safe and phone the police. Which is obviously not something I wanted to do. He did calm down eventually with no memory of what happened. I tried to encourage him to go out the garden again, he very soon became like last time so I ended up going out for a while and upon my return he’d forgotten everything and calmed down. Today I just went to sit in the garden to complete some paperwork and out of guilt as the dogs wanted to play. Again my partner started to be argumentative, being unreasonable and nasty. I wasn’t even attempting to involve him or be doing anything gardening related. The dilemma I have is he has always enjoyed being outdoors, he was a brilliant, knowledgable gardener. I would like him to be able to enjoy the garden but can not cope with his behaviour when we go out there. He only appears content when watching television or listening to the radio. But of which are quite sedentary activities. He also has days where he sleeps a lot. I want to get him doing more but anything that bears anything complex or hobbies he used to do he gets seemingly distressed. What should I do? I am on a waiting list for an Alzheimer’s companion for a couple of hours a week and a singing group. But I worry that his lack of activities will make his decline quicker but I either can’t get him to engage with the activity or he becomes nasty. Sorry it’s a long one. Any advice appreciated.
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,716
    Female
    London
    If any kind of activities make him aggressive, they seem to overstimulate him and it will be better to stop them. It's hard to get your head round such changes, but people with dementia do need a lot of rest and often get overwhelmed by groups or noise. Maybe because he was a keen gardener the unfinished state of this one distresses him - I can only guess, but whatever it is, you cannot ignore the fact he's not happy in the garden.
     
  3. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,655
    Female
    I would guess that he feels anxious in the garden because he knows it's 'not right'. Firstly it isn't his usual old garden, and secondly it doesn't look much like a garden. He's also in a new environment - the bungalow - which is also a big change for him to adapt to. So the anxiety shows itself in aggression. He gets distressed when you try to involve him in 'previously complex hobbies' because he cannot remember what to do, and that upsets and frustrates him. He isn't being 'unreasonable', he just can't cope.

    Is he okay with you going out there on your own? If so I'd leave him indoors watching TV - that's fine, it's his 'safe place', he's content doing that (as content as he can be). His world will get smaller and there really isn't anything you can do about it. He won't deteriorate quicker because he isn't participating, it's the other way round. He doesn't participate in activities because he's deteriorating. Take the lead from him and let him do what he's comfortable with (while obviously keeping yourself safe).
     
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,930
    N Ireland
    Hello @JulietLew, it's important to deal with this development and also protect yourself. I think that a chat with the GP may be a good start.

    There's a Factsheet about this issue and in the hope that you can get some advice from it here's a link to it https://www.alzheimers.org.uk/sites...ctsheet_dementia_and_aggressive_behaviour.pdf


    I know you didn't want to follow the advice given by the help line but I have often seen it advised to have a safe room, with a safe exit, available and to keep a phone to hand in case help needs to be summoned.

    This may seem like a step too far. However, I have read that it can be useful to report any physical assault to the police as they will record that and this can be useful as a paper trail if you ever seek assistance from Social Services in the future.

    The way I would look at it is that you may not want to do this but how long will you be able to put up with such a situation and how will it develop if not kept in check - you have already noticed that the situation escalated when he wasn't even being asked to do any gardening.

    You may be at a stage where a little help will keep things on an even keel for a while longer.
     
  5. JulietLew

    JulietLew Registered User

    Feb 23, 2015
    3
    Newport
    #5 JulietLew, May 20, 2019
    Last edited: May 21, 2019
    Thanks all for your support and advice. Sadly I can’t even just sit in the garden without him getting restless or anxious. I feel guilty he’s not doing much because his children believe it is me closing his world down. They’ve rarely if ever seen his frustration or anger. Also I’ve read falling asleep a lot could be a sign of boredom so hoped involving him in the garden would help that. So hard to know what advice to follow or what the best way is to care for a loved one in later stages.
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,551
    Female
    South coast
    Take no notice of what his children say - they have absolutely no idea what looking after someone with dementia involves.

    Falling asleep could be due to boredom, but IMO it is much more likely to be due to the dementia itself. Trying to make sense of a world when your brain is damaged is tiring and most people with dementia take naps during the day.

    Do you find that he gets upset when you are not in his sight? Im wondering whether he sees you going in the garden as going away from him and he then becomes afraid? If you could work out what the trigger is it might be easier to mitigate it.
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    If anyone with dementia becomes aggressive when they are encouraged to do something they are not willing to do, whatever the cause, it may be wise for carers to let them dictate the issue.

    Whether the reason is boredom or overwhelming inability to cope, we are in danger of believing we know best with a lack of understanding of their confusion and difficulties.

    In my experience with someone who could become aggressive, it was never what I thought was best for him but what he thought was best for himself.
     
  8. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,035
    Nottinghamshire
    It's very easy for someone who isn't involved in caring for someone with dementia to make suggestions as to how to improve things or slow the decline. But this is an illness like any other and it gets to a point where it overwhelms the sufferer to the point where they cannot, rather than will not, do things or cope with things.

    If his kids are so concerned about him maybe they could come and look after him for a while and see how it really is. If they're not willing to do that then ignore them. They don't have a clue!!

    I agree with the others, don't force the issue as it will lead to more aggressive behaviour. If you need to call the police they won't judge him or treat him like a criminal if you tell them that he has dementia. They are used to dealing with these situations. It's important to keep yourself safe.
     
  9. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    479
    Female
    High Peak
    It sounds a lot like fear to me. You have only recently moved to the bungalow and although it might be simpler (and safer!) the change may have unsettled him. As he seems OK whilst napping and watching TV, these things may be alleviating his anxiety over the new place for a while and he feels safe. Maybe you asking him to go out into the garden is 'too much' because he doesn't know this new area and nothing looks familiar. And maybe when you go out on your own he sees this as you leaving him and panics.

    Just my thoughts! You say he always liked gardening so perhaps you could work towards it by drawing a plan of the garden and getting him to help decide what you'll do with the new space, get a few plant catalogues to browse through, etc. From there, work towards looking at the garden from the window and then maybe... one day...

    Good luck - hope you find a solution.
     
  10. JulietLew

    JulietLew Registered User

    Feb 23, 2015
    3
    Newport
    Well it’s a huge learning curve trying to work out trigger points and best way to avoid them. Yes I do think there is an element of feeling more secure with me around as even when he’s in a bad mood with me he seeks me out. Which is difficult when I’m trying to get a bit of space to calm down or I need to go out. I’ve not been able to go to my local mind singing group for months now and really miss it.

    Have applied for an Alzheimer’s buddy scheme where they take him out a couple of hours a week but as with everything there is a waiting list. Just draining and upsetting when he seems to just see all the negatives but none of the positives of what I do. I know it’s the illness but that doesn’t stop it hurting.

    Thanks for all your kind words, advice and support.
     

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