My mum is has recently been diagnosed with frontal lobe dementia,

Discussion in 'Younger people with dementia and their carers' started by sford91, Dec 3, 2015.

  1. sford91

    sford91 Registered User

    Nov 4, 2015
    112
    Hi Guys,

    Mum has recently been diagnosed with frontal lobe dementia she is 57. We have had very little support regarding the diagnosis or very little help from any professionals. My sister is 22 and lives local to mum and I am 24 and live in Newcastle. Thankfully recently mum has been seen by a community mental health team, however they have been no help with regards to support and benefits. Mum is currently in a 4 bedroom house by herself and it has been on the market since October as she can't afford to stay in it any longer, I just wondered if anyone you of any benefits people like mum are entitled to as we are increasingly worried about her financial situation along with everything else.

    Does anybody else feel like its heart breaking. And feels like it's waiting for somebody to die? I know this is very negative and I'm not usually a negative person but not really sure how else to cope?
     
  2. Alison N

    Alison N Registered User

    Jan 3, 2015
    207
    Surrey
    Hi Sford91

    I am sorry to hear about you mum and she is so young. She should be entitled to Personal Independance Payment as she is under 65. The Citizens Advice will help you complete the form and make sure you think of her worst days. As she lives alone I expect she is already claiming reduced council tax but just check. You don't say if she is working. If she is not she could be entitled to Employment Support Allowance and should be put in the support group where the allowance is higher. My husband was diagnosed just over a year ago at the age of 51. He has been able to claim all of the above.

    I was given some very good advice when I first joined here. That was not to look into the future and enjoy every day. I still have dark days and you will too. If you feel it is all too much have a chat with your doctor. There is a huge amount of help here and no one will ever judge you, they only ever help. Keep posting.

    Alison x
     
  3. Mikemanc

    Mikemanc Registered User

    Dec 3, 2015
    16
    Hello,

    My mum was diagnosed with FTD nearly 3 years ago. You can apply for Personal Indipendance Payment for your mum.

    The condition is heartbreaking, but try to see the good while you can. I know it's difficult and at times it can be extremely trying but you do get some good moments in there too which you can cherish with your mum. If you never saw the negative you wouldn't be human it's only natural. If you have to take reduced hours at work you might also be eligible for income support or when the time comes carers allowance.

    Keep your chin up x
     
  4. Ellaroo

    Ellaroo Registered User

    Nov 16, 2015
    161
    Liverpool
    My mum has vascular dementia but frontal lobe is affected. She is 89 and memory loss, was first noticed in 2005 but she was diagnosed in 2009. Not to build your hopes up but mum is still continent, mobile, climbs stars using wc only last 6 months eg for trafford centre shops. Uses delta walker for outdoors short distance .


    She can be v uncoperative rude like lady c and bit sexy like keith lemon with inappropriate talk. We dont laugh at time but when we get home.
    I have negative thoughts eg when mum doesnt realise people have died and then calls them for everything for not visiting her.
    I am older than your mum and sad to think of loss to you and your sister.
    Keep going and stick together. There is help out there but you have to find it. Hope younhave a good sw, makes a difference .
    Thinking of you all xxxxxxx
     
  5. Ellaroo

    Ellaroo Registered User

    Nov 16, 2015
    161
    Liverpool
    Think you can get further reduction in council tax because of mums mental state. X
     
  6. sford91

    sford91 Registered User

    Nov 4, 2015
    112
    Thankyou

    Hi Guys,

    I just wanted to say thankyou very much for all your replies, I feel more positive since returning from work as it distracts me. Mum has been at the memory clinic today and they have prescribed her sertraline so hopefully that will help with mums mood. We don't have a s/w however I have emailed Citizens advice s hopefully they will return with some help. Mum doesn't work, drive, or do anything anymore up until September she was a very independent person. She does not have any income anymore and will officially be signed off work from December, so we will see what happens after that and what she's entitled too. Carers resources advised weren't not entitled to carers allowance as me and my sister both work full time which is a bummer I am currently supporting mum financially. We are currently paying for somebody to come in once a week to spend time with mum and support her with cleaning the house etc that alone is £144. So money is tight currently and as the house isn't selling we're even more concerned.

    I will look into the council tax aswell




     
  7. River15

    River15 Registered User

    May 28, 2015
    10
    Hi

    My mum has been diagnosed recently at age of 55. It is heartbreaking. It feels like you're grieving for the person she used to be. I have moments where we have a pretty normal conversation and it is brilliant. Although it's been this way for a little while now, it constantly hits me like a punch in the stomach. I still can't believe it's happening. I feel robbed of so many previous years and I am so helpless. No one can really say anything that makes things better but be comforted in the fact other people are going through these emotions too and feel free to chat at any time!

    My family have started to live for the small things and it makes you appreciate life a lot more xx
     
  8. sford91

    sford91 Registered User

    Nov 4, 2015
    112
    Hi River15,

    Its mad isn't it how we are just expected to 'cope'. We noticed mums deterioration over a little while and had her backwards and forwards to Drs for months and they were convinced it was Vitamin B12 deficiency had her on tablets and nothing changed. I am a mental health nurse and although dementia is not my area of expertise I knew months before had exactly what it was and kind of accepted it. But we should't have to accept it its a awful disease. And like you i literally feel heart broken I am very good at hiding my feelings and putting on a brave face and everybody knows me as a strong person but inside its killing me. Its the little things like you said make the most of the here and now and not thinking to far in the future. Currently my conversations with mum are pretty normal and although her personality has changed at times I am still able to see mum if you get me. The most difficult thing currently is her speech its difficult to understand her sometimes and she forgets to do things like leaving taps on cupboard doors open etc forgetting to lock the front door. But we are getting by, shes had to stop working and now finds her days very boring but doesn't have the energy to do things but when we are with her she hyperactive and always wanting to do things very much like a child. It is difficult and i never really know what to say to people when they ask other than shes okay because nobody really understands.

    Mum complains about lack of independence now but when we're not there she does everything herself so When I am there I make her do it, shes says i am being mean which I am but she then does do it just takes a little bit longer, and we do laugh about it

    It also difficult because I live away so go home regularly and mum absolutely loves it when I get home the and we do alot of fun things to keep her busy however my other sister who lives very local to mum sees her daily and my mum compares us she's not like 'you, she's serious and boring', I explain to mum that she can't compare us and its not fair because my sister is the one she see's regularly she's the one that gets the grief. And on the other side of this its about trying to balance a full time job and a my relationship and dad who has prostate cancer!.

    I am going travelling next year for 6 months in October with my OH and mum is pleased with this and encouraging us to go ( we've already put it on hold for a year) and is looking forward to us going however I am not sure how she will cope because she cries when I leave now causes she misses me but I dread to think how she will be this time next year! I feel selfish etc going but I NEED to for my own sanity and as I have explained to mum I am only a plane ride away and can come home. I think she'll be okay when i am away its just the process of me actually going.

    I have paid for me and mum to go on holiday in April so we just keep referring back to this mum has been really low since her diagnosis and has had suicidal thoughts which I can totally understand and I imagine I would feel like this So we are keeping her positive. She has since commenced sertraline so watch this space. Hopefully when she moves we can get her a dog.

    Sorry for the ramble, night shift brain in full swing here
     
  9. River15

    River15 Registered User

    May 28, 2015
    10
    Hey sford91

    Sorry only just read your message. How has your week been?

    Where are you going on holiday in April? I was thinking about booking a holiday with my mum in summer but feeing a bit apprehensive in case she wanders off and she's recently been having bad mood swings.

    Where are you going travelling? Dont feel guilty! I am sure your mum would want you to go. And it'll do you the world of good I am sure. How old are you if you don't mind me asking?

    Speak soon x
     
  10. sford91

    sford91 Registered User

    Nov 4, 2015
    112
    heyy

    We've had a good week in the grand scheme of things, house is sold and mum has bought the bungalow she loves so that is positive. She's really excited about that and is relived but overwhelmed with thought of moving but aren't we all. i have spent last few days at mums before Christmas as my duties as a nurse require me to work over Xmas day etc. We're going on holiday to Spain in April which will be good!

    Happy Christmas to you all

    :)
     

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