1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Can someone please help me

Discussion in 'Middle - later stages of dementia' started by clairedelacey, Dec 15, 2015.

  1. clairedelacey

    clairedelacey Registered User

    Dec 15, 2015
    Hello everyone,
    I hope someone can give me some advice as I am feeling very bewildered and upset with this situation as I have never experienced this before and am at my wits ends and don't know where to turn.
    My Father is 82 and has Alzheimer's I'm not sure what stage he has as I don't know how we find this out? He is becoming very difficult and unpredictable and hardly sleeps, he wakes up at all hours and gets ready to go out. He's also becoming quite aggressive and has problems with incontinence.
    He lives with his partner of 25 years Dorothy and she is near to cracking up and is not coping at all well. I really need some advice on where we can turn and who can help us, I don't want to think of him going into a home although I know this is inevitable eventually, can we get help with care at home?
    Please can someone just give me some general advice and point me in the right direction and possibly advise of what to expect in the future?
    Claire xx
  2. Beate

    Beate Registered User

    May 21, 2014
    #2 Beate, Dec 15, 2015
    Last edited: Dec 15, 2015
    No one can predict the future, every dementia patient is different and stages develop differently for different people, so don't get too hung up on stages.

    You should phone Adult Social Services tomorrow and ask for a needs assessment for your dad and a carers assessment for mum. Tell them they have a "duty of care for a vulnerable adult at risk". Wandering puts him at risk and aggression puts your mum at risk, not to mention the lost sleep for both of them.

    You could also consult the GP plus the Continence Service. They can help with delivering incontinence pads.

    I don't know whether your dad would agree to day care or sitting service, but it's clear that your mum is in dire need of respite, and social services have to assess the situation and offer help. Don't let them fob you off.

    You can also contact your local Alzheimer's Society, Age UK and Carers Centre. They can provide advocacy, practical support with applications for Attendance Allowance or Power of Attorney, and emotional support as well.

    Plus, keep coming here for support! Best of luck.
  3. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    Hi Claire
    Welcome to TP - there is lots of support on here and people will be along soon to help you out
    I can help your with a few practical bits

    You can phone Social Services Adult Care Duty Desk and ask for an assessment for your dad - use the words vulnerable and at risk to get them moving - when they come ask for day care that should be an option - a day centre where your dad can go for lunch and activities. As well as our social services centre we also have Crossroads Day Centre where people can go for up to 3 days and it is also worth googling Dementia activities + your area to see what is going on. There is probably a fair bit but you need to search for it. Some care homes also do 'day care' which can be useful but I would try the day centres first

    You can also ask for a carers assessment - this will give you a break to Dorothy and perhaps some 'free' hours of help possibly

    It will be helpful for you to apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day for your Dad and write down the help that he needs (not the help that she gets but what she NEEDS). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask

    I would strongly advise you to join your local carers organisation - they usually have a carers cafe (and so do Alzheimers society in some areas) and it is worth a morning off work to go and find out what help there is in your area over a cup of coffee. Google carers cafe with your area and then carers organisation

    The Dementia helpline is a useful number to have

    lzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

    The Helpline is usually open from:
    9am - 8pm Monday to Wednesday
    9am - 5pm on Thursday and Friday
    10am - 4pm on Saturday and Sunday
    As is age uk

    Age UK Advice line free national advice line that is open 365 days a year and takes in excess of 250,000 calls annually. To talk to someone, just call the freephone number 0800 169 2081 and they are open 24 hours so you can call at a time to suit you

    I hope that this helps to start with but come back and keep asking. Thinking of you all xx
  5. clairedelacey

    clairedelacey Registered User

    Dec 15, 2015
    Thank you so much Beate, I'm going to take a day off work tomorrow to try and sort something out, I feel like the doctors have been little or no help, apart from the initial diagnossis nothing much has been done or said! Fortuntately I have power of attorney which I applied for when we first noticed the slight memory loss etc, I'm very alarmed and frightened by how fast this seems to be progressing and I'm not sure if that is normal, perhaps there isn't a normal where this horrible condition is concerned?
    thanks again.
    Claire xx
  6. Quilty

    Quilty Registered User

    Aug 28, 2014
    Hello and welcome. If you want to learn more about dementia then i would suggest going on youtube and typing in Teepah Snow. These were life savrs for me as they gave me ways of coping, understanding and talking to my mum. Keep posting. There are lots of great people here to help no matter what the problem. We are a secret army.
  7. clairedelacey

    clairedelacey Registered User

    Dec 15, 2015
    Thank you

    Thanks for all of your replies, it's lovely to have such a nice welcome and to know there are other people going through the same thing. I would love to go to one of the carers cafe's but I don't think there will be one around here as I live in Northumberland and there's very little around here but I will keep looking.
    will definitely be in touch with social services so I'll let you know how we get on.
    Claire xx
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
  9. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    Hi Clare and welcome.

    We have all been where you are right now, some of us (like me) are just a little way into the journey and some are much further down the line.

    I only discovered Talking Point after I'd got most things in place but it would have saved me SOOOOO much Googling if I'd found it earlier! Sadly you don't get issued with a handbook when a loved one is diagnosed with Dementia and, as pointed out above, everybody is different so there's no set template anyway.

    I just went hell for leather and searched online for anything and everything I could find out. There is some marvellous advice already posted but I would highly recommend calling up Age UK for advice, they were brilliant with helping us fill in Attendance Allowance forms and LPA (which thank goodness you already have), plus advice on respite care, benefits and all sorts of other things.

    Get as much in place now as you can so that you don't have a load of forms and bureaucratic rubbish to deal with further down the line when you are dealing with more difficult problems.
  10. clairedelacey

    clairedelacey Registered User

    Dec 15, 2015
    Hi Suzanna, thanks for the reply I've learnt so much already in such a short space of time thanks to the replies one here! you sound like your in a similar stage with this as I am? I think by tho 1969 in your profile name that you are about the same age as me? Can I ask if it's your parent who has alzheimer's and if so how you are coping with it, are they still at home and what you see happening in the future?
    Claire x
  11. Kevinl

    Kevinl Registered User

    Aug 24, 2013
  12. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    Claire, yes I was born in 1969! My Mum, 81, has mixed dementia, Alzheimer's and Vascular but I believe the emphasis is on the vascular as she suffered several TIAs in March which made a big impact. Her dementia is fluid too, most days she knows who I am but some days she doesn't. Many mornings she cries and can't explain why.

    She still lives at home with my Dad who is 88 and has Vascular Parkinsonism and although he is still fairly sharp mentally he does have minor cognitive impairment and I believe he is going the same way as my Mum although he aced his memory clinic test in October (as did my Mum 2 years before she was diagnosed, but I knew!)

    In the future... well. Who the hell knows?

    So much depends on the unknown. I love my parents dearly. But I hope this doesn't go on for too long. And you know what I mean by that. And I could not say this anywhere else without being branded a monster.

    But I fear the future so much, for all of us.
  13. consheets

    consheets Registered User

    Jul 14, 2015
    #13 consheets, Dec 22, 2015
    Last edited: Dec 22, 2015
    Advice: Get a Elder Care Lawyer (This is the most important thing you can do.)

    In the USA there are FREE in-home services, check them out ASAP. Also, check to see what your state allows. Do not wait for things to get worse. The quicker you act on these issues the better. My Mom is 81 and she live in a facility, very close to me, that has Memory Care. I tried having Mom live with me, but it did not work. Mom was bored and wanted more things to do, while at the same time, I was exhausted watching over her 24/7.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.