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Need to find hope for the future- daycare. anger issues, early onset

Discussion in 'I care for a person with dementia' started by earlyonset89, Feb 9, 2016.

  1. earlyonset89

    earlyonset89 Registered User

    Feb 9, 2016
    1
    Chorley, Lancashire
    Hello Talking Point forum,

    I wanted to turn to this forum to ask for advice as I'm really struggling to see how the current situation is sustainable.

    My dad is 63 & was diagnosed with early onset Alzheimers two years ago, although he has had different symptoms for around 7 years it just took him a long time to get a diagnosis.

    Anyway my mum is a lot younger than my dad- she's 53, still working full time whilst trying to care for him.

    I've been living in a different part of the country for the last 8 years (going to uni and then working in a different city) and moved back on a temporary contract 4 months ago thinking that I'd be able to help loads. However, 4 months have now passed and I've not managed to achieve any where near what I'd hoped and my contract is nearly over and I will be moving back to my city of residence (my long term partner lives here, along with my brother and all of my friends) - judge me if you like but unfortunately there are more job opps there.

    My dad spends his days at home alone whilst my mum is at work. In the morning we get him washed and dressed, leave him drinks (which he doesn't always remember to drink) some lunch (which he usually remembers to eat all of it) and he spends the day pottering around the house. He does occasionally have accidents (toilet related) but we have managed to escape these for the last few months.

    I've been trying to get care sorted for him but the issue I'm having is- how do people afford it?? Also what happens if he behaves badly- sometimes he is so angry or crude I fear that the daycare centre might refuse to care for him- what would we do then?

    Sometimes he becomes aggressive- grabbing my wrists when I'm trying to help him, shouting at me in my face, pushing my mum. We went to the memory clinic in January but my mum told me not to say anything about his moods as she said that she didn't want them to put him on sedatives. Has anyone had a good experience of these in helping to deal with erractic moods?

    My mum earns a good salary and throughout their lives my parents have saved hard (own their house etc.) but my mum see's her only option as a daycare centre which she can just about afford to fund along with carers to pick up and drop off my dad at home (£1500 pcm). The problem is because she is so young she says we cannot get in in touch with social services as it means she will be left with nothing and she has a fear of being retired with nothing.

    Does she not have any rights as an individual? Regardless of marriage- will all of her assets become his?

    It really fills me with despair- I'm in my mid-20's I'm trying to get on the property ladder and establish a career and cannot afford to contribute towards care costs. But at the same time I see my mum carrying on looking after my dad and I worry that she s going to burn out with exhaustion.

    He is young and physically fit so aware we could be in this state of hell for 10 years.

    If anyone is in the same situation I'd really appreciate your thoughts.
     
  2. Lash

    Lash Registered User

    Jun 14, 2015
    16
    Just wanted to say hello, I don't know the answers to your questions regarding funding etc but as a fellow 20s year old just want to say you're not alone. I hope someone can give you some guidance. Have you spoken with your local Alzheimer's society/advisor? X
     
  3. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    Hi, sorry you've found us but welcome.
    First of all you are not alone, There are lots of prople her willing to pass on advice, often learned the hard way.
    Now this is going to sound a bit judgemental, but I must ask, Is Dad locked in when he is in the house alone, or can he get out if he wanted/needed to? The reason I ask is to establish how safe he is at home alone. Can he make himself food or a hot drink?

    Your Mum is worrying over the wrong information financially. She can apply for Attendance Allowance for Dad, ( make sure that she fills the forms in on a "Bad Day". ie telling about the toiletting accidents will help, and whether he can manage medication by himself. Can he wash himself or dress himself. The high rate is about £90 per week now and is not income related. The GP can refer him to the incontinence clinic where information and equipment ie pads etc, will be provided.
    The Local Authority Adult Social Care should be contacted. They will be able to advise Mum about Daycare/Residential care/ home based carers etc. They will need to perform a financial assessment but this is only based on Dad's income and savings. Mum's own money will not be affected. If their house is in joint names, then again only his half would be valued, but normally it will be disregarded if Mum also resides there.
    Although not all LAs are as helpful as ours was for my late Mum, they are not all the bogeymen that the media would often have you believe.:D

    I would also suggest that Mum downloads and completes the LPA forms( both legal and finance and health and welfare) for their area, from the OPG site. The sooner they are completed, the easier things can be transferred into Mum's name when necessary ( thinking utilities etc here).

    Lastly, it's not really a good idea to hide symptoms etc from his medics, you know. You could be denying Dad help and medications which might help delay the progression without "Doping" him and you could be creating a false image of the progression of Dad's illness.

    Anyway this is enough from me... good luck and keep posting.:D
     
  4. Louby65

    Louby65 Registered User

    Mar 26, 2014
    620
    Scotland
    Hello earlyonset89. Your story is quite tragic and I can assure you that no one can judge you for making decisions for your future . My mum had a stroke 27years ago and then diagnosed with vascular dementia a few years ago . I have looked after her almost singlehanded for 23 years since my dad died . I gave up many opportunities ( including settling down and having a family ) as I always put my mum first and I can say to you that there are many times that I regret missed opportunities . Your mum and dad I'm sure wouldn't want you to miss out on any opportunities , so don't feel guilty for wanting more . My mum attends a day centre 4 days a week and pays around £250 a month . She now has a carer who looks after her when I'm not there but I now receive a direct payment from social services . We were assessed and an amount granted . We have our own house which they discounted when assessing us . Could this be something your mum could pursue . I don't know where you live but a good place to start is the Alzheimer's society . Also your mum should register with social services who are a wealth of information and can help in this situation . People seem to be very reluctant to involve them but in my case it was all positive . They were so helpful and supportive . Another thing would be to get your mum a carers assessment which can be very helpful and can be arranged by social services . Your mum will be entitled to help and support but she needs to make the first step and ask . Another point of contact is the gp, which your mum should contact . I know how stressful looking after someone with dementia , and for a long time I felt very vulnerable and alone but not anymore because I sought help and it is out there , so please look for it . Your mum needs some direction and you need peace of mind that your mum is getting the support she need to look after your dad , so that you can get on with living your life and grasping every opportunity . Best wishes to you and your family . Lou
     
  5. susy

    susy Registered User

    Jul 29, 2013
    806
    North East
    Oh my you must be worried. This is a lot on your plate. A few things I've noted.
    You said your mum said not to tell the memory clinic about his moods because she doesn't want him to be sedated. I think another tac would be if the memory clinic don't have the full picture they are not able to help fully. Possibly they would put him on mood lifting medication or something more suitable for his needs. Often medical professionals sway away from sedation unless all other avenues are explored. Also you can put your view across that you don't feel that sedation is the way forward. This is usually listened to unless it is an unreasonable request (which it isn't)
    As for finances, does your father receive attendance allowance? If not he should. I have no idea how much your mum and dad have in savings but this all really should be assessed. When it is assessed if it is joint savings it is deemed that 1/2 is mums and 1/2 is dads. The house is disregarded (safe) while mum still lives in it. I would get this assessed at least so you have a base line before it all goes and your mum is left with nothing.
    The care system is strict and tight and will make you spend as much as they can make you spend, but you do have your own choices when spending your own money, the choices are more limited when under the social services umbrella. I would definitely get them involved to see what help is out there, you may be pleasantly surprised.
    The Alzheimer's society or age concern have people who will come out to your home and give you a good idea as to what you are and are not entitled to.
    Honestly is always best I've found. (Unless it's love lies to my dad who also has dementia)
     
  6. Lawson58

    Lawson58 Registered User

    I am so sorry to hear about your parents and the troubles they are having.

    As I don't live in UK I cannot offer you any advice about accessing help for your dad. But I wanted to support you in your decision to return to the city where you can obtain employment and build your own future because at your age that is exactly what you should be doing.

    Your mum obviously has not really come to terms with your dad's illness yet but if you can assist her in following the good advice that others here have offered then you will have done her a huge favour. There may come a time in the future when you have to put your own life on hold for a while but you need to follow your own dreams and enjoy your life for as long as you can.

    You have done well and I wish you all the best in the future. Don't hesitate to check in here again if you need help or just to offload.
     
  7. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    #7 Beate, Feb 10, 2016
    Last edited: Feb 10, 2016
    Your Mum spends an astonishing £1,500pcm on carers but thinks she'll be worth off if she contacts social services? That doesn't make any sense. Any financial contribution is purely assessed from and made with his money, not hers, though if they have a joint account, half of the money will be classed as his, so it's often a good idea to keep finances separate. Please get her to contact them ASAP - if your dad has less than £23,250 they will have to contribute to care. Her right to a carers assessment is enshrined in law. As others have said, Attendance Allowance and following that his exemption from council tax on the grounds of severe mental impairment will help with finances, plus applying for both LPAs (finance & health) should be a priority. Age UK or the Carers Centre could do a benefits check to see that everything they might be eligible for is claimed.

    I also agree that the GP and Memory Clinic must be told about all the issues to do with his condition to adequately help him. Medication isn't the same as sedation, and sticking her head in the sand and pretending a problem isn't so bad will come back to bite her. If something is found to calm him down, that would also mean the Day Centre wouldn't have a reason to reject him.
     

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