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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, Feb 21, 2018.

  1. Booknpint

    Booknpint New member

    Mar 19, 2018
    3
    Hi, thanks, we are in the process of trying to sort out a care package that will enable me to stay in work as I need that outside stimulation most of all. As with everything this takes time.
     
  2. silvergirlnorth!

    silvergirlnorth! New member

    Mar 13, 2018
    1
    Hi, my husband had early stage dementia. He was diagnosed in Feb 2017. He has engaged with the Alzheimers society through singing for the brain. We are learning to cope day by day. Until he was affected by AD J was my carer as I have disability. We have been dealt something of a double whammy.
     
  3. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,402
    East of England
    So glad you have found this website because it is a great source of support, helpful advice and information as well as a place to put down your thoughts. My husband was diagnosed with AD earlier this month after several months of memory problems and odd behaviours. I have found a place to go so that I am not always troubling my family even though they are very supportive.
     
  4. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,920
    Male
    Bristol
    Welcome to TP @silvergirlnorth!, as Grahamstown says you will find plenty of support and advice here. My OH didn't take to singing for the brain, but she does find music to be stimulating and a music memories café brings a smile to her face. Your own disability will add to the stresses, have you asked Social Services for a care needs assessment for your husband and a carers assessment for yourself? Both of those may help with future plans to help you both cope with the new set of problems you will face.
     
  5. Holly18

    Holly18 New member

    Mar 20, 2018
    3
    Hi. My dad has dementia and it really hurts seeing him disappear before my eyes. Finding it harder and harder to catch glimpses of the person he was. Feel he is not really there any more. I have lost my dad but I cannot grieve and am out there going to work etc and nobody really knows or understands the pain I carry constantly as I try to keep going. I confess I am really struggling right now and am not sure what to do.
     
  6. Nandi

    Nandi Registered User

    Mar 20, 2018
    16
    Female
    Grimsby
    Hello I am Nandi new member my husband has Alzheimer's diagnosed 8 years now I will is on medication suddenly deteriorated this winter now getting urine infections but as it is now sundown syndrome time have to go
     
  7. Primula1

    Primula1 Registered User

    Mar 20, 2018
    10
    Hi
    I am carer to my Mom who is 86 and has vascular dementia and heart failure following a triple heart bypass 15 years ago. She still lives on her own following my dads death two years ago. I go most days now to “sort” her out and am doing more and more in terms of personal care plus housework etc. The thing I find most difficult lately are the fact that at times it is obvious that she does not realise she is in her own home of 50 plus years. Plus she is imagining more people in the house in her bed etc. I realise that up to now it has been okay but is definitely getting worse and more decisions may have to be made. It is very difficult!
     
  8. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,930
    N Ireland
    Hello @Primula1, welcome to TP, you will find this a friendly, informative and supportive place.
    Do have a good look around the site and if you have questions or just want to vent frustrations start a thread and I'm sure you'll get replies.
    With regard to your first post it is know for people to go back to life in their early years as their short term memory is so poor that they cannot retain recent things plus they start to find the world so confusing that they go back to a time when they had more security and control. This may be what is happening with your Mom. Sometimes it is their only way to express their current feelings and if you can get in touch with those feelings you may be able to reassure.
    In addition, if things happen more in the evening/night it may be a thing called sun downing where the shadows etc., that encroach at that time are misinterpreted as people etc. I close the curtains early and keep our home well lit as my wife has this problem. Sometimes an adjustment to medication can help with this so it's also worth talking to your Mom's GP.
     
  9. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,930
    N Ireland
    Hello @Nandi, welcome to TP. You have come to the right place as the members here are a friendly, informative and supportive bunch. If you have any specific questions or just want to vent frustrations don't hesitate to start your own thread as you will certainly get replies. In the meantime do try to have a good look around the site when you haven't got your hands so full. Good luck to you and your husband.
     
  10. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,930
    N Ireland
    Hello @Holly18, welcome to TP. You have come to the right place as the members here are a friendly, informative and supportive bunch.
    Whilst it's true that your dad is getting buried under the symptoms of his illness he is still there and you may be able to see that on good days or days when you can penetrate his fog. Try looking at old family photographs or such and see if you can get a reaction because it will be worth it's weight in gold to you if you do.
    As you're struggling a bit don't be afraid to start your own thread as you will get more help from members, or even phone the Helpline for a one to one chat as that's why its there. The 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
     
  11. silver star

    silver star Registered User

    May 23, 2017
    32
    Hello Holly18, please do not feel you have to struggle alone, this site is really good to put done, how you are truly feeling, also having the added bonus of being anonymous. You probably are grieving, but do not recognise it as such at present. So many of us are in very similar situations, and unfortunately so many people we come into contact with, unless they have had first hand experience of loving someone, and looking after someone with dementia, can never fully understand how the people who care for those with dementia, are affected, emotionally, physically and socially. We . have so many things to juggle that we usually do not take care of ourselves. It is so easy to say, don't forget to look after yourself, but the reality of doing so is completely another story. I am going to say it though, 'don't forget to look after yourself', let your feelings of grief out, but most importantly you will never be alone with your thoughts, whilst you can put posts on here. Sorry to have gone on, I hope I have not put you off. Take care
     
  12. jobo101

    jobo101 New member

    Mar 21, 2018
    2
    Female
    cradley heath
    Hello there, My mother has dementia and from what I have learnt seems to be at stage 5 right now(scale1-7). It is very hard to communicate with her, but she is able still to do basic things. I have a brother(49) and sister(52), I am 53 and my mum is 82.
    My problem lies in the fact that both myself and my brother have mental health problems, which we have both suffered from since we were young. My brother lives with my mum but as her disease has progressed he has become frustrated to the point of drinking all day and smoking. He stays away from the house as much as possible as my mum is prone to nag at him and he does not take it well and becomes aggressive. He has never worked in his life due to his condition. He makes no effort to help her at all even though she needs to take medication 4 times a day to relieve pain from another condition.
    My sister and I help. My sister takes her shopping but she has a son of 10 to care for. I go round 3-4 times a week as currently looking for work, and spend a lot of time with her and cook her food as she cannot herself.
    I myself am also finding it very difficult to deal with the, the way my brother is behaving which is scary and the fact I have suffered from depression and social anxiety all my life. Unfortunately we are not a close family but do help each other to some extent.
    My mum was a simple lady and had no interests other than doing the house work and being a devout catholic.
     
  13. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,920
    Male
    Bristol
    Hullo and welcome to TP, @jobo101. You and your sister are doing quite well to manage looking after your mum together in the circumstances. I've battled depression myself off and on since teenage years, so I can understand how hard it is.
    Just on the practical side of it, have you had any outside carers in to help with your mum's personal care? That certainly takes some of the pressure away from you. Have you had a care needs review for your mum and for yourself? Both would give you all a chance to find out what help is available now and in the future. Sorry, I can't help with your overpowering brother, the helpline Pete mentioned earlier should give you some of the emotional support you need there.
    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
    Good luck and keep posting, we are all here to help one another.
     
  14. Mrs P 1988

    Mrs P 1988 New member

    Mar 21, 2018
    2
    Female
    Lichfield
    Hi everyone, my Mother-in-law has terrible issues with her memory, I am in the process of getting her referred, however the GP surgery she is at is terrible, it has taken them 8 weeks just to book her in for a blood test, to then hopefully be referred to a memory clinic. I feel at a loos because she needs help now and no one seems to see this as a matter of urgency, however she lives on her own and in a vulnerable way from time to time when her memory is at its worst. I need to get her help now, not in another 8 weeks.
     
  15. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,920
    Male
    Bristol
    Hullo Mrs P and welcome to TP.
    I'm sorry your mother in law is being abandoned by her GP. I can only advise calling adult social care at your local authority and telling them your mum is a vulnerable adult and reminding them of their duty of care to help her. They should get a care needs assessment done as soon as possible. Can you also get her to sign a letter authorising you to represent her at her local surgery, I was registered as my partner's carer and that gives me some authority. You could then emphasise how vulnerable she is and try to hurry things along.
    I hope that helps, keep posting with updates and anything else we can help or support you with.
     
  16. Holly18

    Holly18 New member

    Mar 20, 2018
    3
    Thank you x
     
  17. Holly18

    Holly18 New member

    Mar 20, 2018
    3
    Thank you x
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,402
    East of England
    It can be a lonely place when you have a family member with dementia but when that feeling comes upon you, this website will give you support and people who understand very well because they too are familiar with all the difficulties of the disease. Here you are not alone because we are all struggling to a greater or lesser extent. I hope that you get some advice on how to cope as there is plenty here.
     
  19. SaraLiz

    SaraLiz New member

    Mar 21, 2018
    1
    Hi

    My name is Sara and my Mum was diagnosed with mixed dimentia last year. She is lucky in that she is a candidate for medication and her symptoms are mild at present - long may that reign.

    She had been the main carer to my dad, who was very disabled and housebound. Sadly he passed away in September and she struggles with the loneliness during the day. She is pretty much able to look after herself at present but struggles with short term memory and in particular with names. She finds amazing ways to describe people to me, but it’s heartbreaking when she can’t remember the names of friends she has known for years.

    It’s great to find a forum where I can gain insight from people that have been there and maybe share mine too. Feeling that I am not alone is both empowering and a relief, and I’m really happy to be here.

    Sara
     
  20. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,930
    N Ireland
    Hello @SaraLiz, welcome the TP, you will find this a friendly, informative and supportive place.
    Do have a good look around the site and if you have any specific questions or just want to let off steam don't be afraid to start your own thread.
    With regard to your Mum's loneliness maybe some AS events are held in her area and she may find them of benefit. Just hit the light blue button with Alzheimer's Society in it at the top right corner of the page and scroll down the next page for this message, where your Mum's post code will bring up relevant details

    Find support near you
    Enter your postcode for more detailed information about dementia services and support groups in your area.
     
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