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  1. Expert Q&A: Living well as a carer - Weds 28 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Wednesday 28 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Welcome to Talking Point - introduce yourself here

Discussion in 'Welcome and how to use Dementia Talking Point' started by Mark_W, Dec 19, 2017.

  1. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,738
    Yorkshire
    hello @Bowbelle78
    and welcome to TP
    it's so tough to know that things are difficult for your parents and yet not be able or allowed to help
    your dad does have a point that you have your own family to care for and your own life to lead - though if he wants you not to worry, it would help if he grabbed any support available - I guess he feels overwhelmed
    I believe there is space on the AA application forms for someone other than your mum to explain why they are sending in the application rather than your mum - do have a look and either get your dad to fill this in or do it yourself and send off the forms - as your mum has a diagnosis, I think this will be accepted - maybe say to your dad that it's daft not sending the forms as the benefit isn't means tested and they have both paid their way all their lives so your mum is entitled to receive the AA if her needs mean she qualifies
    maybe do the same with Powers of Attorney - these are available online so you could fill them in, organise a visit by a family friend to act as certificate provider and sit them both down over a cuppa and cake
    just to say also that the fees for any care for your mum should be paid only from her finances - there should have been a financial assessment after the care needs assessment by her Local Authority Adult Services on her savings/income alone (the marital house is disregarded; your dad doesn't have to worry about that) - and if her assets are below £23250 the LA will at least partly fund her care
    as for the alcohol - this is not an unfamiliar problem - might it be swapped for non-alcoholic/low alcohol alternatives (who does the shopping? - maybe just don't buy any but have eg grape juice instead) which could even be decanted into existing bottles to look like her usual tipple
    do keep posting - maybe start your own thread here
    https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/
     
  2. Rolypoly

    Rolypoly Registered User

    Jan 15, 2018
    2,319
    Hi there, I have been an observer of this forum for quite a number of months now and I have got so much information and helpful snippets from it that I have finally decided to get my act together and join in and hopefully give something back. My pwd is my mum who was diagnosed with late early/middle Alzheimer’s about 2 and a half years ago. She has been living with us for nearly 3 years now and thankfully the decline has been relatively slow and she is a joy to care for. My oh is very supportive which helps keep the stress levels down.
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,738
    Yorkshire
    welcome @Rolypoly
    I'm glad TP has been of help to you and pleased you have 'officially' joined us - I find it an amazing resource not just of information but of support and sympathy - members are so generous in sharing their experiences
    start your own thread when you're ready ....
     
  4. ConcernedSon69

    ConcernedSon69 New member

    Jan 6, 2018
    1
    Hi
    I am trying to help my parents - mum is mid-80s and has had alzheimers for over 10 years. She is looked after by our dad, late 80s and while keeping numerous conditions at bay, doing a fantastic job of looking after her full time.
    He insists he doesn't need help, and we have to respect that, but our concern is about what happens if he should suddenly fall ill, have a stroke or die. None of their offspring lives close by so we can't drop in to check up on them on a daily basis.
    So we are trying to find a monitoring service or alarm system that either he can set off if capable, or that checks twice a day to make sure they are both ok. If dad passes out, mum is no longer aware enough to call for help so we need to make sure someone will know that something has gone wrong, and send help.
    Does such a systems exist and if so does anyone have recommendations for which ones are best?
    Many thanks for your thoughts.
     
  5. Tricot

    Tricot Registered User

    Jun 20, 2017
    84
    France
    Hello everyone
    I'm here because I have memory problems and am worried about dementia. I don't yet have a diagnosis. I've learnt a great deal from this very supportive forum.

    Tricot
     
  6. Pauline Bill

    Pauline Bill Registered User

    Aug 21, 2017
    3
    Hi, I'm new to this, I have loads to ask.
    My mom is advanced at a severe level ( it was described)
    At the moment she is at the stage where she can no longer walk unaided by another person, she can no longer stand or hold her body weight, she no longer speaks, when she does it's just making loud noises, she has a vacant expression & her breathing is laboured
    I'm scared
     
  7. Pauline Bill

    Pauline Bill Registered User

    Aug 21, 2017
    3
    So am I, you are not alone on here
    Take care
     
  8. staceetill

    staceetill New member

    Jan 16, 2018
    1
    Hi there,
    I’m new to the forum so just trying to get the hang on things.
    I’m 25 and my mum recently got diagnosed with early onset Alzheimer’s in 2015 aged 50. Her partner has selfishly left her due to not being able to cope so me and my younger sister are trying to help as much as possible but this is becoming a strain especially with us both working full time and my sister being pregnant. I’m wondering whether there is any help out there for things such as supported living, befrienders etc. We find it very difficult time wise to get to any groups.

    Any help will be appreciated.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,112
    Kent
    Hello @staceetill . I'm glad you've found talking Point. I'm sure you'll get lots of support and good advice here.

    You should not have to manage on your own. It must be devastating having this happen to your mum, especially as she is so young.

    I suggest you contact your local branch of the Alzheimer`s Society to see what is available in your area.

    http://alzheimers.org.uk/?_ga=2.208491282.1698557348.1514712810-1604875082.1508255841

    You may also get some good advice from the National Dementia helpline.

    https://www.alzheimers.org.uk/info/...4.1698557348.1514712810-1604875082.1508255841

    0300 222 11 22

    Do ask for help.
     
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,738
    Yorkshire
    hello @Tricot
    a warm welcome to TP
    it's good to read that you have found the site helpful and that being here is already supporting you
    keep posting with anything that is on your mind, as you will have seen already, someone is always here ready for a chat
     
  11. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,738
    Yorkshire
    hello @Pauline Bill
    and welcome to TP
    I'm sorry to read of your mom's situation at the moment - however much we know our parent's health will deteriorate it's still a shock and frightening to see what is happening - at least you do have TP to come to and share your experiences
    have you someone you can talk with, maybe care home staff, her GP
    might you start a thread of your own as there are members who do know what you both are going through and some may stop by and chat with you

    maybe here
    https://forum.alzheimers.org.uk/forums/end-of-life-care.73/
    just press the blue 'Post New Thread' button near the top right, give your thread a title that hints at what it's about and then type away in the text box

    maybe this booklet will help
    End of life care (531)
     
  12. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,738
    Yorkshire
    #172 Shedrech, Jan 16, 2018
    Last edited: Jan 16, 2018
    hello @ConcernedSon69
    a warm welcome to TP
    it can be pretty frustrating watching our parents deal with their situation, be itching to help but be faced with 'we're OK'
    I'm afraid I used some emotional blackmail with my dad, as he would do anything for me and didn't want me to worry - so I said that him not letting me help out a bit just made me worry so much because I felt so bad that I wasn't close enough to visit often and maybe he could check out what support was about just to put my mind at rest .... is there something that would give your dad a way to look at accepting support?
    there are alarms etc around and many have been discussed on TP - so maybe a search of the site will find the threads - the search bar is at extreme top of this page
    dad had a carephone system and door alarm and tracker all through his Local Authority Adult Services who installed them for him and I think because they were through the LA the fee was pretty low - so this may be a way to get your dad to have a care needs assessment for your mum, which she has a right to - then hopefully he will realise there are home care visits and day care and sitters and respite all out there to help him keep his wife well and at home for as long as possible - the LA very much want to support people to live in their own homes, so your dad needn't worry that they would 'take over' her care from him - and, depending on your mum's finances, the LA may also at least part fund any care fees - let him know that the marital home is disregarded in any financial assessment so it's not at risk of being taken to pay for his wife's care, as many older folk have been frightened that this may happen
    just to mention your mum is eligible for Attendance Allowance, which is not a means tested benefit, and a reduction in Council Tax
    and are Powers of Attorney in place for both of the, as these will help you support them in managing their affairs (you mention you are concerned about what may happen if your dad becomes ill - POA means the Attorneys will be able to manage their affairs for them should that happen)
     
  13. Pipeth

    Pipeth Registered User

    Jan 13, 2018
    118
    Female
    Northamptonshire
    Hello Grahamstown This behaviour has happened to us, my husband just got up in a panic and fled out of a restaurant when we were on a family holiday, saying he had to leave; I put it down to anxiety and being in an enclosed space at the time, but now wondering if it this was the start of MCI. Since then it has been downhill with social occasions, he agrees to go then pulls out at the last minute refusing to go. Just recently he asked me "Why can't I talk to people." Like you I have come on here for support and have found so many behaviours, incidents in common with others, it is helping me understand the Mild Cognitive Impairment diagnosis. Struggling but coping. Take care.
     
  14. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,249
    East of England
    Thanks so much Pipeth. One minute everything seems to be going along fine and then bang. I have had an incident, this time alcohol related. He tolerates it less and less well but could tolerate it fine even 18 months ago. I have managed to nip it in the bud but it is so upsetting. So I decided to logon and now feel a bit better. One does not feel alone.
     
  15. Mark_W

    Mark_W Volunteer Moderator

    Sep 28, 2015
    4,036
    London
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