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Welcome to Talking Point - introduce yourself here

Discussion in 'Welcome and how to use Dementia Talking Point' started by Mark_W, Jan 17, 2018.

  1. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,434
    Female
    Dundee
    Hi @geo-b and welco,e yo Talking Point.

    I'm sorry to read of your situation. I'm glad you've found the forum and am sure you will find lots of support and help here.
     
  2. Capt Pat

    Capt Pat New member

    Jan 26, 2018
    1
    Hi

    Just heard about this group and am hoping that I may get information and ideas on coping mechanisms as and when things crop up. My husband has early onset Alzheimers which was diagnosed a couple of years ago. On reflection he has probably had it for longer than this but just didn't recognise the early signs. We are now both 60 and it is a shock to us both that the things we planned for may never now happen. This is ok and we will of course make new plans but maybe not the ones we had hoped to do. I wont say anymore for now but welcome the chance to read what others have to say and maybe add more later
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,903
    Yorkshire
    hello @Capt Pat
    a warm welcome to TP
    your 'go with the flow' approach is a good way to deal with life - make the most of now, together, and get a few things prepared for the future
    so settle in to this wonderfully supportive community, have a read round and start your own thread whenever you have something to chat about; others will reply and share their experiences
    you'll be glad you joined us
     
  4. Dakota

    Dakota New member

    Jan 27, 2018
    2
    Hi everyone,
    I’m a new member today. I am the partner of a dementia and Alzheimer’s care giver and I am hoping to get advice on shared responsibility with caring for a dementia sufferer. Her Mother has been diagnosed for around 3 years now, been on a couple of trials and is on medication. My partner has 2 brothers. In short Does anyone have any advice on how to resolve issues how to divide up care responsibilities between siblings. I guess this must be a common issue? My partner, living closest, has by default taken on the main care giver role. The brothers do far less. Basically my partner has tried in vain to get them to get more involved but they are not just either unable to not willing too. Although my partner will do whatever it takes to help her mother she would like some of the daily pressure to be shared more evenly so that she too can have some normality. The issue appears to be not so much that she is the main care giver but that her brothers are taking advantage of her and refusing to take on more of the care to take pressure off of her. This feeling of unfareness if now impacting on our relationship and she is often tearful with frustration at her brothers. I have recommended she seeks some mediation with her brothers via some organisation as face to face talks with them appear to be off the agenda through their unavailability. Is there such an organisation? Would this help. I just don’t know how to help. Any advice would be appreciated.
    Many thanks. .
     
  5. sue90

    sue90 New member

    Jan 27, 2018
    1
    Hi I have just joined this forum, as my dad has Lewy Bodies Dementia and I look after him, at the moment he still lives alone in his own house, but lately he has become so much worse, he sleeps all the time, hallucinates terribly - which causes him a lot of distress. My mum died in March and he has gone down hill since then. I just wanted really to be in touch with people going through the same thing. Thank you x
     
  6. Sebbie-Bee

    Sebbie-Bee New member

    Jan 27, 2018
    2
    Hello,

    My granda has recently been diagnosed with dementia and my granny is struggling to deal with his dramatically changing behaviours. She believes he is acting out to annoy her and it’s very hard to watch.
    My paternal grandparents both had Alzheimer’s but their behaviour didn’t present the same traits that my granda exhibits. He often goes to the toilet on the floor in the bedroom or even walks outside to the farm yard to go to the toilet. However, the most problematic issue is his constant spitting. He will spit onto the floor and won’t use tissues. It’s becoming a real problem in that he can’t really go out anywhere. Does anyone have any advice? Much appreciated.
     
  7. rappie31

    rappie31 New member

    Jan 27, 2018
    1
    Hi. I'm a new member. My Mum was diagnosed with Alzheimers last year. In hindsight she has been unwell for a long time. My Dad is caring for Mum in their home. They are both 81 and Dad has his own health issues. Mum has days where she is absolutely fine and days where she doesn't know who the family are. Dad gets really down on the bad days and incredibly optimistic about the future on the good days. On the bad days she wants to go home to see her Dad. He died 40ish years ago. I'm now going to sound very angry/selfish/frustrated and possibly many other things too. As a family we are out of our depth. We've tried the various techniques such as changing the subject, diversion tasks but they don't work. We are getting a lot of verbal help, I.e. Try this, try that etc but not much practical hands on help. Dad needs help at home but he won't arrange for carers because of the conflict/challenges he will face from Mum. The carer gets to go home, meanwhile Dad is left to deal with mums annoyance and agitation. We are considering respite care for mum but I know Dad is terrified of getting her into a home because she won't want to go. Mum had a bad day yesterday. I spoke to her GP, the dementia and intensive support team, social services and the admiral nurse. There is talk of a mild sedative medication to reduce her episodes of agitation. She accused me of lying to her this week about why she can't see her Dad. In an effort to be compassionate the professionals tell us how common her behaviour is. We are beyond that now. We feel very alone. Sorry to go on. There are so many different teams involved it's difficult to know who to turn to for action. Hopefully sharing my experience on here might help.
     
  8. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,903
    Yorkshire
    hello @rappie31
    my gosh, your family are working so hard to help both your mum and your dad
    I'm glad you do have all the agencies involved, though I appreciate that sometimes it is so frustrating as they cannot just take over, especially if your mum is considered still to have capacity to make decisions
    I'd say do try the medication - it's not good for your mum to be so anxious so hopefully it will help her - and this may then help your dad with her care
    quite a few members here have been a bit sneaky with getting a partner or parent into respite/full time care - maybe your dad, or you, could just say to your mum that you're off out to a new place you've found for coffee and cake and, with the help of the care home staff (they are very used to this) take her to the home on that excuse, then say as she's comfy, you just need to pop out for some shopping and you'll be back shortly .... but leave her be - sounds harsh, I appreciate but your dad needs a break - you can before hand have a suitcase packed and hand this over to reception or have already been in and organised her room
    sorry to not be offering solutions
    but you are right; sharing experiences here helps a lot, I've definitely found that
    so do start a thread of your own when you're ready to chat with others
     
  9. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,903
    Yorkshire
    hello @Sebbie-Bee
    welcome to TP
    it's tough wanting to help but not quite being able to
    encourage your granny to talk with their GP and let the GP know about her husband's behaviour and his condition - it may be that he has a dental problem that could be dealt with, though spitting does seem to be something that some people take to doing; habits often do disappear - in bygone days, spitting was 'acceptable' and there were spittoons for the spit; might you try having a receptacle he might use (I appreciate he may not be able to restrict his behaviour) - the continence nurse at the surgery may have suggestions about the peeing
    has your granpa had an assessment of his care needs by their Local Authority Adult Services, as he has a right to this and a care package may well be suggested eg home care visits, a sitter, day care, respite, which will give tour granny a break and support
    also look into Attendance Allowance, which is not a means tested benefit
    I hope your granny can come to realise that he's not behaving this way just to annoy her - the dementia has destroyed parts of his brain so he's lost some of the social inhibitions we use to control our behaviour - maybe show her this (it helped me see what was going on with my dad)
    https://forum.alzheimers.org.uk/sho...ionate-Communication-with-the-Memory-Impaired
    http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf
     
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,903
    Yorkshire
    #70 Shedrech, Jan 27, 2018
    Last edited: Jan 27, 2018
    hello @sue90
    a warm welcome to TP
    my condolences on the death of your mum - so tough for you to be grieving her and supporting your dad
    it's often the case that when a spouse dies, the family realise how much they were doing to keep things together for themselves and their partner - and the change in routines is hard on the remaining spouse
    have you had an assessment of your dad's care needs from his Local Authority Adult Services? - it's worth doing to get some support in place and to flag him up on their systems
    TP is a safe and sympathetic place to come to share your experiences with others, so keep posting
    I wonder whether you've come across this site
    http://www.lewybody.org/
     
  11. Sebbie-Bee

    Sebbie-Bee New member

    Jan 27, 2018
    2
    Thank you for your really quick help!!

    I am going to print this information out and give it to my granny.

    Many thanks again!
     
  12. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,903
    Yorkshire
    hello @Dakota
    welcome to TP
    as if it's not enough looking out for someone diagnosed with dementia, the tensions that appear in families can tear relationships apart
    sadly, what your partner is facing isn't an unfamiliar situation here - some family members seem unable to appreciate how much it costs emotionally, physically and financially to support a parent - and, to be honest, some people just aren't cut out to be carers; sad and frustrating as that is
    so I'm afraid your partner's brothers are unlikely to change, however unfair that feels; especially if she has already laid it on the line how much she is doing for their mother
    it does often seem that one daughter is pretty much left to get on with things
    are LPAs in place for her mother? - it would certainly be useful for your partner to have these so that she has the legal authority to take over her mother's affairs and act on her behalf
    has the mother's Local Authority Adult Services been asked to carry out an assessment of your partner's mother's care needs, as she has a right to this and a care package in place (eg home care visits, a sitter, day care, respite) will take some of the strain from your partner - she actually has a right to a carer's assessment, too
    sorry not to have suggestions to get the brothers involved - maybe your partner needs to accept their stance and settle her mind to get on with her mother's care in her own way - if they don't interfere, that at least means that she can go ahead and make decisions on her own, with your support
    might she herself also join TP; it really does help to realise there are others in similar situations
     
  13. CazzaM

    CazzaM New member

    Jan 27, 2018
    1
    Hi there
    I'm joining looking for ideas to help my Mum. She is middle stage I think, but now new difficulties are arising and now both Mum and Dad are in their mid eighties it's getting more challenging.
     
  14. Dakota

    Dakota New member

    Jan 27, 2018
    2

    Thank you Shedrech for your reply.
    Yes LPAs are in place. Her mum gets a Carers allowance and a visitor has been arranged to come around on a regular basis. I think the thing is that it’s so frustrating for my partner to know that the brothers seem unwilling to help. When the diagnosis first came we thought well that’s 3 people to help with care, visits, shopping and all the other things that go to make up ongoing care. One brother works just around the corner from us and literally drives past mums house on the way home so it wAs thought that perhaps once or twice a week a visit on the way home would not be out of the question. But all that can be managed is a phone call while going from work to car park of an evening. Literally a 5 min walk. They do call mum on occasion but if they find there are problems or maybe something needs fixing, they don’t deal with it. They just text my partner and expect her to resolve it. Which of course she does because not doing so affects her mum not the brothers. And this builds up the frustration. Yes I think daughters do seem to take on the main care role. I’m thinking we will have to work on putting up some boundaries as to what she can manage to deal with, just like her brothers seem to do, and then see what issues arise. I thought mediation of some kind would be helpful but maybe that’s a step too far at this point.
    Thanks again.
     
  15. Twinny1965

    Twinny1965 New member

    Jan 28, 2018
    2
    Hello everyone. My mum has vascular dementia after suffering two strokes and numerous TIAs.She is now in a nursing home as she cannot walk any longer and all the home care packages weren't sufficient for her to remain at home.:( We told her she was being rehoused so she would see people more regularly but after nearly five years she's finally realised room 5 is home!
    She's happy though and all the care staff call her ' smiler' when she's' having a 'good' day! Some days aren't so good when she refuses personal care and food and we try and reason with her but it seems as though she's lost the 'feeling hungry' part of her memory.
    The most upsetting part for me though is when she talks to me in the third person saying how she doesn't' see me or my children anymore when I'm sitting in front of her and she calls me by my name. :( She doesn' do it with my twin sister though and we both visit the same amount of time!
    An old family friend of mine has just been moved to an EMI home after she started being more difficult to look after in the residential home she was in. She has Lewy Body dementia meaning she sees people who arent' there all the time and hears music constantly in her head. It' so upsetting to hear her convinced she' been beaten up in the night by other residents or held hostage by the staff for a week!
    My weekend is spent visiting both her and my mum (though I see mum throughout the week too) and feel drained by Monday morning. I wish I knew what to say to them both. I feel bad sometimes goin along with the things they say even though i know I'm lying in a way so I don' upset them by disagreeing. Am I right to do this as I don' want to cause confrontation by saying that didn't happen. I just want them both be happy but my friend is very depressed as she thinks everyone is part of a big organisation to kill her off!
     
  16. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,806
    Male
    Bristol
    Good morning and welcome to TP @Twinny1965. Sorry to hear your mum is no longer able to walk, and so much more to deal with. How long has your mum been talking about you in the third person? My partner goes through phases when she asks "where's Robbie" and won't accept I'm right here, but it always passes. So upsetting if it's persisting. I'm learning the love lies and going along with the delusions myself and end up switching off sometimes to avoid upset. If you can start posting on the "I care for a person with Dementia" thread you should get better advice and plenty support.
    https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/
    https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/ will give you more support on dealing with the delusions and confirm you are already doing the right the right thing, however hard it can get.
    Best wishes, Rob
     
  17. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,322
    East of England
    @Capt Pat your post is very familiar to me because I am struggling with my husband who appears fairly normal to friends and relatives apart from memory slips and having only one topic of conversation. He is however getting increasingly difficult to live with. I am having to adapt my behaviour and realised only yesterday that reasoning is useless and I just have to ignore the ridiculous incidents which are like those of a naughty child. He has not had a diagnosis yet so it is a case of struggling through trying to work out the best way to proceed without damaging my health too. This place has made quite a difference and whenever there is an incident I logon and read the other posts to try and figure out how to cope. So far it has buoyed me up to carry on. Your situation is more advanced than mine and hope you find support on here to help you. One thing I have learned is that things may be going along normally and then there is a switch and something out of character occurs. I have to start being prepared for this and not get lulled into a sense of false security. Driving is something I worry about, should I be? Good luck with your family and hope that the forums help.
     
  18. Whippersnapper

    Whippersnapper New member

    Jan 28, 2018
    1
    Hi there. This is my first post. I am worried about a friend and neighbour whose behaviour has got worse over the past few months. She has started to misplace things like door keys and believes that someone is stealing from her. I have noticed a level of aggression in her conversation and am now worried about her. She is 83 years old and lost her lifelong husband about 1year ago, but I think this is more than about needing time to grieve.
     
  19. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,738
    Female
    Kent
    Hello, Whippersnapper. It does sound like more than grief, doesn’t it? It is difficult though, for you to do anything, as you are ‘just’ a neighbour. Does she have any family who visit? I would think a first step would be to raise any concerns with them. If she is alone in the world, you might be able to suggest that you are worried and maybe she could see a GP? If neither of these strategies work, then a final resort would be to contact Social Services, and mention the words vulnerable adult at risk. This would be. A last resort though. Hopefully, she has some family you could approach.
     
  20. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,903
    Yorkshire
    hello @CazzaM
    welcome to TP
    I know what you mean about supporting your parents becoming more challenging - and you'll definitely find loads of information here that will help - plus heaps of sympathy and understanding
    so settle in and start your own thread when you're ready so others can help you with anthing that's on your mind
     
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