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  1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

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. DustyAlfie246

    DustyAlfie246 Registered User

    Jan 6, 2016
    12
    Female
    Hampshire
    HI is there anyone who would talk to me. I am my husbands carer. He has vascular dementia and I am finding life very difficult at the moment. He is very difficult to live with at the moment. I can't talk to him as he doesn't listen to me and makes his own mind up about what I say. This can be a casual sentence by me and he comes back with things I don't understand. He seems to mix everything up and its very lonely for me.
     
  2. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,519
    Ireland
    Hello,@DustyAlfie246 and welcome to Talking Point. I'm sure you will find lots of support here. Sorry you are finding things so difficult at the moment. Feeling isolated is very common among Carers - now that you've joined us, do join in any of the discussions, or, if you would like, start a new thread of your own. Just find the relevant section, eg, "I have a partner with dementia" click the "start new thread" button, give your thread a heading in the title box, and then type your message in the box below. Click "submit thread" (or "create thread"), and check the "watch thread" box, so you will be notified of any replies.
     
  3. DustyAlfie246

    DustyAlfie246 Registered User

    Jan 6, 2016
    12
    Female
    Hampshire
    Thanks for your help. DustyAlfie246
     
  4. Tin

    Tin Registered User

    May 18, 2014
    4,826
    UK
     
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,590
    Female
    Dundee
  6. Tin

    Tin Registered User

    May 18, 2014
    4,826
    UK
    It is very difficult. Talking to my mum and her responses making no sense at all, I sometimes wonder why I even try, but feel I have to. I often think about what she is actually hearing when I talk to her. My mum has days when she does nothing but talk and at some point I do tune out.

    Take a look at the Tea Room thread, tends to be Dementia free talk in there and the weekly chat thread is worth joining in.
     
  7. JUDEKO

    JUDEKO New member

    Feb 10, 2018
    2
    Hi to all on the forum. I joined as have felt in desparate need of support after hitting crisis with my mum a week ago. It's good to know there are people out there who understand
     
  8. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,212
    Merseyside
    Welcome to TP @JUDEKO.
    You’ll get lots of support here.
     
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,590
    Female
    Dundee
  10. Jinxie4567

    Jinxie4567 Registered User

    Feb 11, 2018
    15
    #210 Jinxie4567, Feb 11, 2018
    Last edited: Feb 11, 2018
    Hi All, my name is Gillian, my mum was diagnosed with Parkinsons disease with lewy body dementia September 2016... She only started showing symptoms around the summer 2017, becoming agitated not wanting to go out and quite forgetful. In October she had a hospital admission due to a collapse. She spent a few weeks in hospital and some medication changes and then went home with carers going in to give her her medication morning and evening. She became increasingly more agitated and anxious and was back in hospital within 4 weeks... she remained in hospital until last Monday then went into enhanced residential care. I feel absolutely awful for her as she keeps asking me and my brother to take her home, it's just not possible as she's so anxious and as each day goes by she is less able to do things for herself. She wanders about like a lost soul and says she just wants her family with her and she is scared. I feel so guilty and wonder if I could have done something more to help her not get to this stage! i was going through my own health issues and maybe didn't spend as much time as I should have with her. I phoned her at least 4 times a day and done all her food shopping,went to all her Doctors, hospital appointments. I done what I could. I have always been the mother to my mum always sorted out her problems but I just can't sort this one out and all I'm doing is crying!!!
     
  11. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,919
    Male
    Bristol
    Welcome to TP Gillian @Jinxie4567. So heartbreaking to read of your and your mum's struggles over the autumn and winter. I don't know about Parkinsons or Lewy bodies, but I know sometimes my OH pining for home is not necessarily a physical place as much as the security she no longer feels and associates that with the family home in childhood. Others can answer more accurately on medications and care homes, but you can only do your best and try to keep going.
     
  12. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,233
    Welcome to TP Gillian. My Mum (with Alzheimer's) had to go into a care home due to severe anxiety and agitation and although she hasn't asked to go home she has been constantly pacing and looks frightened. The term 'lost soul' really describes how she is looking. It's horrible to see someone like that but you can't blame yourself for her health deteriorating.

    My Mum was referred to the Community Mental Health Team by her GP and I wonder if this is something that has been considered for your Mum? A member of the team has been visiting Mum in the home every 4-6 weeks and so far she has had 4 changes of medication over the last 5 months in order to reduce the agitation/anxiety. So far there had been no noticeable difference but when I visited Mum on Friday there was a huge change - she was laughing and smiling all the time I was there and not pacing. I'm not getting my hopes up as I'm sure if this was just a 'one off' or whether she will continue to stay this way (will find out when I visit later today!) but changes in medication can really help so it might be worth asking for a referral to your local mental health team. They are more knowledgeable than GP's / hospitals when dealing with dementia so they may be able to suggest some medication which could help your Mum and reduce the anxiety/agitation.
     
  13. Jinxie4567

    Jinxie4567 Registered User

    Feb 11, 2018
    15
     
  14. Jinxie4567

    Jinxie4567 Registered User

    Feb 11, 2018
    15
    Thank You Louise for replying, I had already got the community mental health team involved in her care before her hospital admission and she was having weekly visits from a CPN... My mum has also had a few medication changes but I don't see any difference as yet! I just feel there must surely be something to take the edge off the agitation and anxiety she is suffering. To be honest my mum probably looks the best in the place she's in but comes across as the most distressed.
     
  15. Jinxie4567

    Jinxie4567 Registered User

    Feb 11, 2018
    15
     
  16. Jinxie4567

    Jinxie4567 Registered User

    Feb 11, 2018
    15
    Thank You nae sporran for replying, it's good to know I can come on here for advice. I understand what your'e saying about the security it's as if no matter what you do we can never fulfil their needs!
     
  17. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,233
    Mine too! :( Fingers crossed that the CPN can find something that works but I think it can sometimes take a long time to find the right medication - or combination of medication.
     
  18. Jinxie4567

    Jinxie4567 Registered User

    Feb 11, 2018
    15
     
  19. Jinxie4567

    Jinxie4567 Registered User

    Feb 11, 2018
    15
    can I just ask has your mum always had an anxious nature?
     
  20. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,233
    She was always a bit of a worrier but displayed nothing like the levels of agitation/anxiety she has now. In Mum's case she had a fall and whilst in hospital she was immediately put on anti-epilepsy medication which caused anxiety/agitation as a side-effect. She doesn't have epilepsy and it's clear from the hospital notes that she shouldn't have been given the medication but as the hospital didn't tell me she was on the medication it took weeks before it was stopped! Mum became a little calmer after the epilepsy medication was eventually stopped but the anxiety/agitation was still really bad. Since her discharge the CPN have been doing everything they can to reduce the anxiety/agitation by using anti-psychotics and currently anti-depressants.

    If your Mum didn't always have an anxious nature it could be down to her condition but can also be a side effect of medication. I tried my best to reduce Mum's anxiety - I took time off work and looked after her 24/7 when she was discharged - but nothing I did worked. She needs expert help now and as much I would have preferred her to stay in her own home it wasn't possible. Mum calls me 'Mum' and although I am no longer doing the 'hands on' caring I'm still caring for her by visiting and attending doctors appointments when I can, and dealing with the financial side of things etc. It's common for carers to think that they haven't done enough but you did a lot for your Mum so shouldn't feel guilty that you could have done something more. She's in good hands now and hopefully the CPN will find something to help.
     
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