1. Expert Q&A: Living well as a carer - Thurs 29 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 Thursday 29 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.

  1. fairy62

    fairy62 Registered User

    Aug 15, 2019
    23
    My husband is waiting to be seen by a memory clinic , but in recent months his health has detoriated so much . He has lost about two stone in weight , his mobility is awful .In the last two weeks he has got out of the house , once while I was at work and tonight while I thought he was sleeping !! .my neighbour bless him got in touch with me both times . The question I want to ask you guys is it okay to take his keys away from him . I’m arranging to have the door alarm changed to day time .
    I’m so tired and stressed by it all , the sad thing is he’s only 62 and I’m 56 . We are both still young .
    Any advice would be appreciated.
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    290
    Hi, it’s not much help - My Mum has a key safe outside, not much help as the PWD has to be able to exit the house incase of fire etc.
    Think you need someone on here with more experience in wandering PWD.
    I’m sorry I don’t have any real advice but just wanted to let you know that someone is reading your message.
    Keep posting, as lots of people on the forum have a better knowledge of this.
     
  3. fairy62

    fairy62 Registered User

    Aug 15, 2019
    23
    I
    thank you for replying . We have a key safe and door alarms etc . Just wanted to know if I’m wrong to take his keys away .
    I’m glad I’ve joined this group it has been very informative.
     
  4. fairy62

    fairy62 Registered User

    Aug 15, 2019
    23
    So pwd ? What does that mean . I’m seeing all these abbreviations but not sure what they stand for
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    290
    Person With Dementia
    That one I can answer!
    I know when Dad used to “escape” we were told that he couldn’t be locked into the house, as your PWD is wandering that should come under safeguarding issues I believe. Try Social Services, GP etc & see what they say about getting help in while you aren’t around.
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    290
    This forum is amazing, a good vent & some consultation that so many are in the same situation & many in worse positions!
    Let us know how you get on
    X
     
  7. fairy62

    fairy62 Registered User

    Aug 15, 2019
    23
    Will do thank you
     
  8. fairy62

    fairy62 Registered User

    Aug 15, 2019
    23
    Will do thank you . It’s quite a scary thing isn’t it .
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    290
    Bloody terrifying & just as you think you’ve got a coping mechanism- dementia sends you another curveball to deal with!
    Good luck with getting some help in let us know how you get on.
     
  10. fairy62

    fairy62 Registered User

    Aug 15, 2019
    23
    I will do thank you
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    290
    Don’t forget you are entitled to 6 weeks respite care, I got mine in one big lump at the end & sadly Dad wasn’t deemed able to come back home.
    In hindsight it was the best thing I ever did for him.
    Though I still feel guilty that I couldn’t do anymore for him. 24/7 care needs more than one person doing it.
    X
     
  12. fairy62

    fairy62 Registered User

    Aug 15, 2019
    23
    Just realised what pwd stands for lol .
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    290
  14. fairy62

    fairy62 Registered User

    Aug 15, 2019
    23
     
  15. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,741
    Salford
    Hi Fairy and welcome to TP
    I understand what you're saying my wife was diagnosed in her mid 50's and I had to give up work a year or two later things got worse, I lost her in IKEA one time and needed security to find her, she escaped from the house while I was putting the washing out and I found her a few hundred yards away dressed in her nightie and clutching her usual stuff (2 hair brushes and a few ornaments).
    Sleeping I had a gate at the top of the stairs but fixed to take an adult weight and not one she might climb over and fall down stairs or get out, certainly I hid all the keys but I never left her in the house alone.
    Sixty two is young for your husband but that age my wife had become so violent she was put in the cage in the back of a police van (the paramedics wouldn't go near) and sectioned and unlike your husband she was at that time 100% mobile.
    Alarms, relying on neighbours and all the rest are a sticking plaster solution, they might work for now but how long is now, a week, a month or a year, eventually then will become now and you'll have to look to the future.
    One problem is that as a younger person GP's and social services see you as capable, people suggest Attendance Allowance as they fail to read the bit that he's under 65, I always thought the last 10 years of our working lives (after the kids left home) would be a chance to build up a financial buffer but it wasn't, from earning a good wage I went onto £62pw carers allowance and stuffed my/our chance of a good retirement.
    Early onset dementia comes with a list of problems that the post retirement people don't necessarily appreciate, not the least of which is losing that last, valuable 10 years of your working life and all the benefits that brings not the least of which is earning and saving and not eating through your savings and getting £63 quid a week for a 24 hours 7 day a week job.
    K
     
  16. fairy62

    fairy62 Registered User

    Aug 15, 2019
    23
    I’m so sorry to see that your wife was put into the back of a police van !!! I hate leaving him while I go to work knowing I have Carers coming in helps . I know the neighbour can only do so much ,if I could afford to give up work I’d do it in an instant. Luckily my employer is pretty understanding, for now. Who knows what will happen in the future. Our social worker has been brilliant she has put us in touch with lots of people .
    I think the thing that has shocked me the most and my husbands gp has how quickly all this has happened . Your wife is so young to be diagnosed but I believe it takes all ages . Sad fact of life
     
  17. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,741
    Salford
    Below is a link to a very old thread of mine, after 6 months being sectioned and over 3 years in and EMI nursing home. I still go every day but from both a social and a financial position early onset is a financial nightmare.
    K

    https://forum.alzheimers.org.uk/threads/kevinl-that-was-a-week-to-remember.89276/
     
  18. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    196
    Female
    Mid Lincs
    Hi fairy62, welcome.

    Have you applied for PIP, Personal Independant Payment? It's basically Attendance Allowance for the under 65s but has more benefits such as free road tax and mobility allowance. If granted these your hubby will keep them once over 65 whereas AA doesn't give that. I'm not sure about a qualifying period but expect there is, for AA it's 6mths.

    Sorry if you know about this but I read the other day there are many carers who don't know about benefits tney are entitled too so I'm on a mission.
    Hope you find a solution soon, it's very tiring isn't it.
     
  19. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    348
    Another wife of someone with early onset here. He is 63, was diagnosed 5 years ago after a previous 7-9 years of failing health (stopped working in 2007). Now in a Care home.

    I think the first thing you need is a proper diagnosis and care plan. Also lasting power of attorney. So I would push for the appointment with the memory clinic to be speeded up. Removing keys may not be enough. You may need someone to be with him 24/7 sooner or later. I employed carer companions in the home while I was at work. Others give up work themselves. He may be eligible for PIP (a benefit from DWP).

    But first thing is diagnosis (and lasting power of attorney) and then you can get these other things in place. There should be a local advice service provided by Alzheimer’s Society or similar to suggest contacts.

    Good luck! It’s all horrible but this is a good place to start find help.
     
  20. fairy62

    fairy62 Registered User

    Aug 15, 2019
    23
    Extremely tiring . I think I need to look into reapplying for pip now the43 has been new developments
     

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