1. DandyLion

    DandyLion Registered User

    Apr 14, 2015
    Hello lovely people :)

    So recently my dad was diagnosed with vascular dementia. Now thats terrible enough, even though we all kind of knew his memory loss and lack of 'common sense' wasnt down to old age. After all hes 65.

    Things at home are a real struggle too. We moved into this 1930s house three years ago and the house hadnt been touched since the wheel was invented! Eight plug sockets, no heating upstairs, no shower, a conservatory that looked like it was made of twigs and a sneeze could blow it over. We put in for planning permission to do it all up but every time the council refused our plans, our architect would change things without consulting us. What a nightmare! Finally after two years we got permission but building work has been slow the whole house is more like a warzone you see on tv.
    Then theres my mum who has lupus and arthritis. She needs all her knuckles replaced but thatd make her hands out of action for eighteen months and how do we know how bad my 18 stone father will be by then! She can barely open a jar how can she care for him when me and my brothers are at work.

    We knew there was something wrong after he had a stroke and everything slowed down for him. Trying to plan our new kitchen or taking finances for the project are impossible- he just doesnt get it! They lean on me more than ever to help out. Ive had to calculate the money they have, spending for the project and whatd be left and hahaha I was never blessed with a maths brain!
    None of our extended family are there for my mum who keeps saying she will 'be all alone in this' even though she has four kids. When we told my mums sister it was almost like 'so what?' And her brother was equally unhelpful.

    Im 22. I have dreams, ambitions and I want a life! But more and more I feel like my mother guilt trips me into staying home or if I go out I have to take her. I barely get alone time- bar the commute to London every day. Meanwhile my dad who I love dearly is this different person. Me and my siblings all agree hes just not... The same. Hes more aggressive, he constantly talks, constantly sleeps and its heart breaking.

    I suppose my questions would be how can I help mum? Not only through Alzheimers meetings but general day to day things, what would help a carer like her? What should I do? I feel like I need a way to escape but I barely have time- I commute, get home at 8 and have to go straight to bed (rock and roll I know xD ) and from experiences if the house is completed and that stress is gone does it help?

    Sorry for the long rant haha! And thank you for reading <3
  2. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    Hello and welcome to TP. First job, if it's not already happening, is to get LPA's organised while your dad still has capacity. Second job, get SS involved to do a needs assessment for dad and carer's assessment for mum. Make it clear from the start that you have a full-time demanding job and this is not going to change. You must not compromise your own future however much you want to help. You may need to invest some time and maybe some annual leave days to get a support system in place, but you cannot take the lead role in day-to-day caring.

    Because of what you say about the house, I'd also ask for an Occupational Therapist to do a risk assessment of the house. My mum's was organised via her Community Psychiatric Nurse but there seem to be slightly different set-ups in each area, so maybe ask GP or memory service for advice. The OT should then be able to advise on things like grab rails which may help both mum and dad.

    You can't do everything at once, so you need to focus on making life safe and as easy as possible for now and some longer-term plans and projects may need to take a back seat. It's a controversial thought, but it may even be that this house is not going to be a suitable place for your parents to live in the future; they may need something smaller and easier to manage, so they need to be careful how much they invest in upgrading it. Sadly when dementia comes into the equation a lot of ideas about how you want to live do have to change.
  3. Tin

    Tin Registered User

    May 18, 2014
    Well the one thing you've got is youth and energy, such a shame it is all taken up caring for your parents and their home, far too young for all this. Are your brothers still living at home? have you tried to establish if you are entitled to some grants to do the house, things like insulation, new boiler and heating etc Citizens Advice have information on a lot of these, they can also help you with sorting attendance allowance for your parents if entitled. Keep on top of their medication with reviews, if its not helping talk to g.p. You must try and get some time for yourself try using a sitting service/carer if the family won't help. I know, easier said than done.

    You will get advice here, I know there are a lot of young people using tp so hopefully, some of them will be along soon.
  4. DandyLion

    DandyLion Registered User

    Apr 14, 2015
    Thank you all so much for your advise. Even just commenting on thats makes me feel that little bit less isolated if that makes sense... I think being pro active is the best therapy there is so i'll make sure myself and my mum do everything youve mentioned.

    In terms of brothers two do live at home but I think my parents prefer me being in charge because im just a little bit more reliable than them.

    Thank you again <3
  5. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    Hmm don't let your brothers absolve themselves of responsibility just because you're the 'reliable one'! You all need to support each other and it's not fair for you to carry the burden, especially if you have a demanding job! Maybe a 'family conference' would be a good idea.

    I am so grateful my brother (who works full time and pays the bulk of our mortgage) is so supportive and we work together. We each have our strengths so he is in charge of practical stuff (lawn mowing, general house maintenance, cheering up my Dad and reminding me to give myself a break) and I, as full time carer, am in charge of the cooking, making sure everyone is clean, filling in forms, organising benefits and making myself a thorn in the NHS's side :D Make sure you don't assume the Cinderella role while they go out partying!

    When Mum and Dad were first diagnosed I really didn't have a Scooby where to start so I phone up my local Age UK. My god they were BRILLIANT and gave me SO much helpful advice and, most importantly, PRACTICAL help. Phone them as soon as you can.

    Most importantly, keep some time and brain space for yourself.

    I'm sorry I can't advise about the house aspect but the wise words above sound like a great way to start. And I agree that a move to a more practical, if less characterful, house is probably going to be for the best. My parents still live in the home we moved to when I was 2. God bless my Dad for buying a bungalow!
  6. Emily M

    Emily M Registered User

    Jan 20, 2015

    Hello DandyLion

    I agree with a lot of what others have said.

    You are very young and it will be a crying shame if you give your future entirely over to caring for your parents. Of course you can help, but assuming that your mother is a similar age to your father or younger, your parents are still relatively young and if you are not careful you could be drawn into being a long term carer. You must not let your mother take you on a “guilt trip.” It is heart rending to see your father’s mental decline and the person you knew and loved disappear. We can all empathise with you on that. Aggression is a common problem of the disease.

    The first thing is that your brothers really need to take some responsibility and start being reliable, especially as they are living there, whatever your parent’s wishes are. You do not say if they are younger or older than you. Even if they are younger they should be prepared to do some jobs around the house. It will definitely help if the house is completed and the builders should be encouraged to work quicker.

    As your father has a diagnosis then you should be able to get support from the Older People’s Mental Health Team and Social Services who can be a great help. They should complete a risk assessment on both your mother and your father.

    Your father should be able to get Attendance Allowance which isn’t means tested. See:-


    It is certainly worth discussing Power of Attorney. As your mother has a physical, rather than mental disability she may not think it appropriate at the moment, but it is worth considering what to do about the future as to get Power of Attorney the person has to have mental capacity. There is plenty of information on the web about Power of Attorney and Citizens Advice will help on this, on benefits and other issues.

    Good luck.
  7. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    Just a quickie Dandy. I was just on the Parkinson's Shop Online and saw this and thought of you! I realise it's a drop in the bucket but might it be useful for your Mum?

  8. balloo

    balloo Registered User

    Sep 21, 2013
    sitting servce that's a joke not heard anything infact might try ringing again later. that 6 weeks now according to Alzheimers society we should get 8 hrs a month
  9. DandyLion

    DandyLion Registered User

    Apr 14, 2015
    Thank you so much.

    Yeah I know I shouldnt be guilt tripped but I feel obliged... You are right though. All of you are. My brothers are all older- the youngest is eight years older than me. I feel like armed with all this wonderful advise yourself and everyone has provided I can at least start asking them to contact people and get advise. You are right- why should it all be on my shoulders? :)

    Thankfully we have discussed power of attorney etc and my dad at this moment in time is very happy to start the ball rolling with that. I am grateful that people are starting to hear about dementia more through tv dramas and news programmes so we are vaguely armed with what we should do but its still a monumental task and I cannot thank you all enough already!

    Hahaha! I never really told my mum I signed up for here so when I let her know last night- then said that someone had mentioned an aid for opening cans she was delighted!
    Thank you for making us smile- i'll order one asap haha! :)
  10. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    Bless you, glad to help!

    Now we just need to find an aid for bustin' big brothers' chops....
  11. Miss Merlot

    Miss Merlot Registered User

    Oct 15, 2012
    #11 Miss Merlot, Apr 17, 2015
    Last edited by a moderator: Apr 18, 2015
    Hi DandyLion,

    I couldn't pass this thread by and not comment. (You may also find this thread helpful.)

    I'm really sorry to hear about both your parents. I have been caring for my MIL since my late twenties and am 33 now - I've found that carers in our age range are a very rare breed, and I know it can be very isolating when all your friends are still about parties, babies, careers etc, and you are all about Social Services assessments, compassionate communication and (if you're anything like me!) going silently mad...

    No pressure at all, but me and six other ladies in their twenties and thirties helping to care for a relative with dementia have something of a little support group of two going - we meet in central London every few weeks, have a drink and bite, and share war wounds... We find it really helpful to just do something "normal" but also be able to share with someone who "gets" it and will not judge you for anything that you say, without having to go in for the whole formal support group setting.

    MM x
  12. Emily M

    Emily M Registered User

    Jan 20, 2015

    It's great that this site seems to have been of some use to you. Sorry my link for getting Attendance Allowance didn't seem to come out when I posted it. I think that happens sometimes on here. There is plenty of info about Attendance Allowance if you Google it. If you go to the Age UK site, for example, there is loads of info on there.
  13. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Emily your link works for me.

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