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.

I dont want my dad to go into a care home

Discussion in 'Younger people with dementia and their carers' started by hope1972, Feb 6, 2008.

  1. hope1972

    hope1972 Registered User

    Feb 6, 2008
    2
    Tamworth
    Hi,

    I am new to this, been on the internet which seems like forever and came across this forum.

    I am so shocked on how many people have parents with AD as young as my dad.

    Basically to cut a long story short my dad has AD he is only 64 and has been diagnosed since 2002. I am his only child and am only relative near (mum died when i was young ) . He lives on his own and owns his own house. he has a care package (approx equates to 2hrs a day) it is all been working well.My dad is fine no hassle he is still quite indepandant considering and very active. The carers are great no worries at mo but know got to look into the future he cannot stay there forever on his own as he will need 24hr care.

    we are not at that point yet who knows could be 1 yr away or 10 So its come to the crunch: do we move in with him? I have been seriuosly considering this for a while. The idea is to build an ext on his house so he has has own flat so we are not under the same roof.

    However its not just me and dad to consider. I have a family of my own husband and daughter 6. They all support me and are keen to live with my dad. All sounds easy but what are the implications of doing this? i still want to work so does my husband we want to carry on as normal as possible i will care for my dad when not at work as much as poss but still need to consider my daughter and husbands needs. other big question we will we still get support off social services i have no idea of what strain emotionally this will have on us all. It could be a decision that works or it could not.
    I feel well in the dark its a big step and dont want to do it with my eyes closed.

    to end i want a result where my dad is happy in his own home (which he wants he is terrified of going into care) and so are we can this be possible?

    Anyone out there who is experiencing the same decision or doing it now.

    Sorry long post but had a bad day. phoned local aged concern today for advice and i was so surprised but she gave no advice on our situation very disappointed with response. Although when I rang the senior help line the lady was very nice and advised me to contact our local aged concern as they have services where i can have a meeting face to face i just seem to speaking to so many different people and organisations on phone but not getting any real help. Oh well I will get there i have an appointment with CAB soon so hopefully can get some advice.

    And my thoughts are with everyone who have a loved one with AD.
    I have good and bad days today not so good but i am determined not to let this awful diesease take my dad away from me yet. he still smiles when i walk through the door and hugs and kisses my grand daughter every time he sees her.

    ps sorry but my punctuation and spelling is bad but i am excused had a long day today


    Thanks for reading



    I love my dad and dont know what to do for the best. He is all i have left and he still is my dad and knows who i am, .
     
  2. VIB35

    VIB35 Registered User

    Oct 15, 2007
    27
    Herts
    Hi Hope1972, wow i feel for you being an only daughter in all this. My mother is 64 and has AD. I do have a brother and sister though too and my father is my mother's main carer. She has deteriorated very quickly, sadly, and we have help in for 12 hours a day to give my father some time out. We use a good agency called Allied Healthcare who provide care for 4hrs plus per day and have also been recommended Christies agency who provide 'live-in' carers which is something we may need to consider to avoid M going into a home which we just can't bear the thought of. Have you spoken to your local Alz Society contact? They were quite helpful to us initially and came to the house to speak face to face. Crossroads may also be able to help for short periods during the week if you need help.

    Moving in with your father is a difficult decision to make as you don't want it to impact your daughter and husband's life too much (although naturally it will). I have 6 and 4 yr old daughters and it is difficult juggling being a mother and daughter/carer.

    You sound as though you are on the case though and it is great to investigate all the options now before you face the situation when it is a necessity. You don't want to make mistakes in a hurry.

    TP is a godsend - talking online to people who know what you're talking about is so helpful, I find. I'm sure you will too.
     
  3. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Hope 1972,
    My husband was diagnoised at 58 and at 61 was placed in E.M.I. Unit by his Consultant.
    When you have a young child, as much as you love your Dad, there is the long term Caring and being a wife and mother.
    You have already been onto people that are so helpful but one important things is - do you have Power of Attorney set up ?
    When my husband was first disagnoise and we made our wills, that document was set up at the same time.
    I wish you all the best.
    Christine
     
  4. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    716
    Ashford, Kent
    As great as TP is for sharing experiences, it's not going to give you the answers you want - the should I, shouldn't I move in.

    We are all different, all have our different thresholds of what we can cope with. All have different views on what is right, or wrong, and whether we should impact our children etc. The point that we 'let go' and give into care will vary from one person to the next. The amount of sacrifice an invdividual is also prepared to make will also vary.

    My parents came to live with us 5 years ago. Mum had kidney failure, Dad has dementia. Sadly, we lost Mum 3 weeks ago and I now have to deal with Dad. He is worse than I had realised, but not bad enough for me to be putting him in a home.

    I have 2 children (7 and 13). They have lived with the extended family situation now for 5 years and don't even know what a 'normal' family is really - but, children are resilient, they adapt. My children haven't suffered for having my parents here. Nor has my husband - I still have enough love for them all.

    Has it always been easy?? No.

    Are we worse off financially than if we hadn't done it? Yes, definately - we mortaged ourselves to the hilt to buy a house big enough for us all.

    Would I make different choice now with all that hindsight? No way. I have made sure they have well balanced, home cooked meals every night for 5 years. They haven't had the burden of running a house themselves. They haven't had carers to come in and prepare dinners etc.

    I don't know where things are going to end up with my Dad, but for me it's a take it as it comes and only give in when I cannot cope any longer.

    First, day care, then residential care, but bring him home for dinner and weekends, then finally give in and say, that's it now we can only visit him.

    I'm lucky my husband supports me. I don't feel he would ever throw back in my face how much time, money and energy we have devoted to my parents.

    I have friends who think I am crazy and that I do too much - but, each to their own.

    Personally, care homes are the last resort, when you physically cannot cope. I appreciate, that even that has thresholds though. Not sure how I would cope if my Dad were incontinent. I know that will be very hard for me to deal with. Maybe that is my threshold. I won't know the right time until it comes. All I know at this moment, is it is not now.

    Me, I would say don't worry about your child/husband, together you will all cope if your relationship is loving and strong. Live with your Dad, build memories before the end BUT.. that's just me and my opinion.

    Sometimes what is in your head, and in your heart don't balance, and that is where the choices become really hard.

    Best wishes - and I really do understand exactly the position you are in. I do have 1 sister, but she is no help at all. Her attitude is, oh well - put Dad in a home.

    Beverley
     
  5. hope1972

    hope1972 Registered User

    Feb 6, 2008
    2
    Tamworth
    Thanks for all your replies, its so reassuring to know there are others that are going through the same thing.

    I feel more positive today especially after reading the responses. I know I have a lot of investigating ahead over me , My trouble is I want to run before i can walk!!! I wish someone could wave a magic wand and tell me which is the right choice. I know with more time and advice from various friends,family, TP and professionals I will be nearer to knowing.

    Answering yes I have a EPO set up we did this back in 2003 when dad was ok. I am just registering it now. Can anyone tell me what impact doing this will have on me as I look after his money benefits bills have been for years (never been good my dad with money!!! ) Do i have to keep accounts of all his finances do they ask to see these. Just want to be prepared.

    Also my dads care is provided by social services, his social worker has told me direct payments will not be an option for my dad and i also read on tp last night that if a person is mentally impaired and cannot make decisions for themselves then they cannot have direct payments is this true? I am just thinking further down the line when dad may need more care i will have no control and say on how much and when he has care and from. Not sure how all this works. Can anyone shed any light?

    To do list tomorrow: ring alziemers society again and see what services are local to me I really would like to meet face to face its so much more productive.

    Need to find a solicitor (left messgaes with 2 one has gone on holiday and the other has not replied to me !!!)to deal with the major complication of assets (my dads and mine) and coming up with a solution where we can live with him and make sure we are all protected. Apparently we need to apply to the court of protection to get permission to build this extension!! All we want to do is look after him and be close we cant be allowed to do that !!!

    Anyway im moaning again !! but I know for sure i will be less stressed been next door to him as i have been running 2 houses, bills etc for 4 years and i am stressed now we only live 4 miles from him but its hard work back and forward all the time.

    So to end thanks again for your replies, your advice and thoughts have been very very helpful

    I will keep sounding TP glad i registered!!! :)


    Take care all xx
     
  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,429
    Whether you can or cannot get direct payments will be entirely down to your local authority at the moment. There are plans to extend this option to practically everyone (whether they want it or not) but at the moment some LAs will allow it and some will not. If your social worker said it couldn't happen, I'm guessing that your LA is one of the "nots". Having said that, though, at least one regular poster (grommit) is currently attempting to get his LA to change their position on this. It's not quite as cut and dried as they like to make out.
     
  7. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    106
    merseyside
    HI Hope

    Hi
    I can;t believe that you can;t get Direct Payments this is awful. Your dad should not be descriminated against because of his dementia. You are his advocate and as such should be allowed to buy choose and delegate his care in his best interest. I woul pursue this to the limit.
    I have 17 hours Direct payment and a top up from the NHS for care for my dad. I love my direct payment because it allows me to buy the care for dad that works. ie regular staff who stay the full hour. Not task orientated agencys. I am probably near your stage in that my mum can;t cope with my dad much longer and I can see that it is either a home or dad lives with us. It is a nightmare trrying to juggle everyones needs but at least we care enough to consider all the options. I too am like you and don;t know what effect it will have on my young family. The other thing is if it didn;t work out and you had pooled your resources financially the LA could claw back the money if he needed full time care. We just don;t have a crystal ball do we to see into the future.
    I wish you all the luck and keep posting. Feel free to PM me no worries.
    Thanks A
     
  8. katherine

    katherine Registered User

    Sep 5, 2006
    57
    Hi Hope
    I'm in a similar position - my mum is on her own - she needs 24 hour care now and we managed to get it at home for her - all paid for by direct payments and funding from the independent living fund. Really push the direct payments thing - i can't believe you can't get them when we can - my mum is totally mentally impaired but you just set up a trust with three trustees and manage it yourselves. Ask to speak to someone else at your social serivces.
    Be careful of moving your dad in with you as your wages coulkd be taken into account when coming up with who pays for his care.
    If you need any more help or info about how we got it i'm here
    Kate x
     

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