1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    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.

  1. lynz

    lynz Registered User

    Feb 16, 2005
    11
    west sussex
    Hi I was just woundering if someone could give me some advice, about rest-bite. We live in West Sussex and my Dad is 50 yrs old and is now in the late stages of Dementia.
    My Mum has been told that he (or sould I say she) can have rest-bite,
    the only thing is none of us drive and the only places that can offer the right kind care, because of his age, are in Milton Keynes and Manchester.
    I dont know the names of these places but if anyone knows of these rest-bite accomodations, I would be very grateful if they could plz let me know as much as posible about them.
    Thank you in advance.
    :)
     
  2. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Dear Lynz

    When my husband goes in for a weeks respite his SW takes us in, then brings me home she stays until I calm down, when he comes home she picks me up and we go get him. It’s not that far, about twenty mins each way. We have no car.
    I should add that Fred (my husband) is 57 he has been going to the same home for about two years now. They had to get a special licence, but he went in the re-hab section of the home because the people tended to be younger and more active he loves it there.

    Anne
     
  3. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Dear Lynz

    There must be respite homes or hospitals nearer to you than the ones you have been told about.

    Get on to your mums social worker, they have a list of respite centres in your area.
    You may have to ring up to secure a place for your dad but the SS should supply a list of suitable places.

    You don't say who told your mum about respite care, but if it was either medical staff or Social workers they should have also told you what is available.
    If you haven't yet got the SS involved, do so immediately.

    If you post more detail someone on the forum will no doubt have had similar problems and will be able to use their experience to help you.

    Best wishes
    Barraf
     
  4. Jude

    Jude Registered User

    Dear Lynz,

    Go to the main pages of the AS Web. You will be able to check out your local AS Branch for West Sussex from the map. Do give them a call and they will be able to advise you about respite in the locality. I'm very close to you locality-wise and there is a lot of help available.

    Best wishes and welcome to TP.

    Jude
     
  5. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Dear All

    There is a problem here about age, it took our SW over a year to find a home that would even try my husband for a short visit, they are registered for people over 60, to take anyone under that age they have to apply for a special licence just for that named individual, for respite it’s not worth their time or money. I don’t know what the SW did to get the home to take Fred I daren’t ask.

    Anne
     
  6. lynz

    lynz Registered User

    Feb 16, 2005
    11
    west sussex
    Thank you all for all your helpful advice think we are getting there after a hard week. its now 3.40 in the morning just sitting here at mums keeping her company! :rolleyes:
     
  7. lynz

    lynz Registered User

    Feb 16, 2005
    11
    west sussex
    Today was the hardest yet

    Today was the hardest, things have got to an all time low.
    Mums world has fallen apart!!!
    today he was meant to go to respite but has ended up sectioned. :(
    I FEEL LIKE A FAILURE
    I have failed surporting my Mum and caring for my Dad.
    How long and where we are yet to know.
     
  8. bjthink

    bjthink Guest

    Why do you feel like a failure? Your dad was Sectioned as a medical emergency. If he'd gone into hospital with a burst appendix, would you have felt like a failure because he had to have emergency surgery?
    Please don't subscribe to the myth that central government is trying to sell us that dementia is an illness that can be totally cared for in the community, and that it is a social rather than a medical issue.
    Dementia is a psychiatric and neurological illness which presents some major crises when the patient has to be stabilised as a matter of total medical urgency.
    It is NOT a mere social disturbance which families are perfectly well equipped to deal with.
    It is an illness. It is a severe illness. It is a fatal illness.
    Sometimes, when it's in remission, and when it's been medicated and prescribed for, the sufferer can maybe have periods of loving care in their own home, but as the illness progresses, the best care may be in a good hospital or nursing home.
    None of us should feel in the remotest sense guilty because someone we love is ill. There's no 'fault' in illness. There's no one to blame. It just happens.
    Please rest easy with this. At last the NHS has come in to do the job it should have done all along. It never was your responsibility, it was the duty of medical expertise to help out your father, because he paid NI contributions all his life, and he is owed the care he may now be given, because he's paid for it.
    CARERS AREN'T RESPONSIBLE.
    All we do is fill in the holes in the system, and love unconditionally.
    My love to you, and my deepest respect.
    x
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    While I agree with BJthink, I also know that most of us feel, at a critical time, that we have failed our loved one in the area of dementia care.

    We all want to keep them as normal as possible for as long as possible, but dementia is out of any ultimate control of you me or god, and for most people there will come a stage when it is all just too much for us - the health and safety of the patient and/or their partner/family require the next stage of care.

    We can't stop your feeling like a failure, but you need to know that you aren't one.

    You have cared. How can that be failure?

    To rephrase: Faith, Hope and Caring - and the greatest of these is Caring.

    Do keep an eye on Mum as she will need that especially over the next while.
     
  10. lynz

    lynz Registered User

    Feb 16, 2005
    11
    west sussex
    Today happened in a flash. we went from going to chill make mum rest and do them things that we call the norm! like getting her hair cut leaving the door open while she puts the rubish out without dad doing a disapearing act! she has lived like a prisoner for at least 3 yrs. I love my mum with all my heart she is the back bone of our family nothing can explain how much we all love her and o her so much! I feel like a failure because all this time I have blocked eveything out not showed any feeling just done what needed to be done to care for him, and now he is out of my reach and I want to cuddle him tell him I love him and just evan smile at him hes out of reach. they took him 10.00 this morning and still we dont know for how long.
    I keep thinking he will be calling out to my mum in a room around people he dont have a clue who they are.
    Scared and afaid.
    One of the times he needs us the most and we are not there!
    sorry i dont mean to uoset anyone or mok all the hard work that has gone in to getting the help that is now out there.
     
  11. bjthink

    bjthink Guest

    Darling, you're not alone.
    In a crisis situation, we do what we have to do. The demands of the immediate take over.
    You can cuddle your dad tomorrow or the next day. But meanwhile cuddle yourself, and be kind to yourself, because you've really done the best for him, so you're already a star.
    Brucie said he re-phrased when he said Faith, Hope and Caring. He didn't. The original Latin 'Caritas' which was translated in the Bible as 'Charity', actually means something that no longer, sadly, exists in the English language (except as a sort of money-grabbing sign-up clause). Caritas is best translated as 'Loving Kindness', which is the same, more or less, as 'caring'. You have 'caritas'. Caring.
    So. listen,
    'And now abideth Faith, Hope, and Loving Kindness, these three, and the greatest of these is Loving Kindness'
    Today you applied Loving Kindness. You cared. You loved and knew that love and kindness are sometimes difficult to justify, in your head. But you did it from the heart. So leave the head out of it, because this decision had no place in your heart-felt kindness.
    You done good.
    x
     
  12. Jude

    Jude Registered User

    Dear Lynz,

    Guilt is such a horrible and corroding emotion. I just don't know why we all feel like this at crisis times. Perhaps it's a result of the feeling of inevitable futility and helplessness of caring for AD sufferers. It does wear off though eventually and we regain our sense of having done our very best in an incredibly impossible situation.

    Jude
     
  13. lynz

    lynz Registered User

    Feb 16, 2005
    11
    west sussex
    :cool: We found out 1:30 in the morning 28 days in chichester (think thats how its spelt) only about 50 miles from us but still waiting to find about seeing him and other things like that. Thank you everyone......
    I can not believe that he was kept in a cell until he was assessed!!!
    crawley police where amazing they let my sister go sit with him feed him and just be there with him.they couldnt have been better!
    we where a bit confused at frist why they wanted to talk to him outside but we know now there is nothing they can do while he is in his own house!
    I hope mum gets the help she has needed now from ss! I Think they have thought she is dealing so well and left her to it but in fact she has had to cope because they have left her to it.
    I think it is now time for her to have some couciling for her self 7 yrs ago if was my grandad and now my Dad!
    last night i let my feelings out dont do that often but to day Iam back to coping and being the one who is there to help mum and tell her everything is ok feelings are not my strong point.
    thank you everyone :rolleyes:
     
  14. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Dear Lynz, It as been a terrible time for you all but sometimes it takes a crisis like this to get things sorted.This will give you all time to gather stregnth and deciede what is the best course of action to take next.I am sure your dad will be cared for at least he will be safe. Dont beat yourself up we all do what we can and still we dont feel its enough par for the course in caring i suppose.storm
     
  15. Michelle-A

    Michelle-A Registered User

    Feb 5, 2005
    27
    Essex
    #15 Michelle-A, Feb 24, 2005
    Last edited: Feb 24, 2005
    FAO Lynz

    Hi, I have just read your post about the care homes in Manchester and Milton Keynes. I'm not sure if it is too late to tell you this now, but just incase ....

    We live in Essex and my mum is in the home in Manchester, it's called Moston Grange. Mum went to live there seven months ago as respite with the intention of it becoming permanent if all goes well. It's only just become her permanent home now.

    I must say that me and my sister went to visit the home in Milton Keynes as a possibility, but were horrified. It was more like a mental Institution and not suitable for my mum. We have had a few problems with Moston, but things are getting better and it's nothing like most of the care homes we visited which were all for old people. My mum is 53.

    I must admit that Manchester is really far for us to visit my mum, so I know how you feel, but we really had no other choice. It's a real pain her being so far away. I don't drive either, so have to go up when my sister drives up or I get the train. She went into hospital yesterday and we can't go up to see her until the weekend. I'm really upset and want to be by her side cos she must be so scared.

    There really was nothing else out there suitable for my mum. It's shocking!

    Sorry to hear of the problems you are now experiencing. They told us at one point that mum would be sectioned if they couldn't find any suitable care homes for her and then Moston came up.

    Best wishes, let us now what happens!

    Kind regards,

    Michelle.
     
  16. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Lynz, I am so very sorry to hear of your troubles. Lets hope that good things will come out of this crisis. As a family you seem to have had a pretty rotten deal these last years, you must all be exhausted by it all. Being sectioned is really nothing when seen in the bigger picture of dementia, it was just the only way the professionals cuold legaly remove your Dad, that's why they had to get him outside. That way he went "willingly" if you like, makes it easier for all concerned and less upsetting. If the order is for 28 days, this will give you all time to get together and discuss what is best for your Dad in the circumstances. The professionals have a duty to listen, especially to your Mum, as to what she feels and wants done. I do hope you can now at least sleep a little and get a bit of rest from caring. He is now in a place of safety, try to see it that way. It was getting too much and there was nothing you could do. You are not any of you failures, it is this darn diseas. We all of us can only do our best, you have all done that for a very long time. Take care, love each other, day by day as Norman says, sending you all a big hug, love She. XX
     
  17. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Michelle, sorry to hear about your Mum, hope things improve soon, love She. XX
     
  18. Jude

    Jude Registered User

    Dear Lynz,

    Have a look on the West Sussex Local Council website. There are quite a lot of Care Homes in the area, and a couple of really good ones at Broadbridge Heath, which aren't too far away from you I think. Also there is an absolutely excellent Nursing Home in Shoreham, where my Aunt is living. I haven't got the info with me here in Cairns, but can find out for you when I get home in early April.

    Jude
     
  19. lynz

    lynz Registered User

    Feb 16, 2005
    11
    west sussex
    Can't stop worrying

    Dad has been gone three and a half days. :( We went to chichester yesterday to see him, at frist I was devested when I saw him, I held myself together pretty well, he broke down when he saw me and my mum. It is one of the hardest things I have ever had to do.
    I feel I have aged ten yrs this week and seen what really counts, he looked so frail
    and not the way I remember him from only 3 days ago, :confused:
    Strange how I didnt see him everyday but I am worrying and missing him so much, just knowing he is not with my mum is such a horrible feeling,
    The unit he is on made me feel better the nurses where so nice and the doctor was so supportive of my Mum and put her mind at rest, which has given her total peace of mind and I think it is now turning into a possitive thing! although Dad was sectioned for up to 28 days they have told us to look at it being more 6 to 8 weeks so that when it is time to come home everything is sorted and My Mum is getting all the help she needs and as many of the problems we have been having are sorted. I am so disapointed with the way my mum has been left to cope her SW and her GPs have been no use (just druging him up) and this is going to chage the Doctor from the unit is going to sort out a total care package for Dads return home so that we can enjoy the time we do have rather then caring for him becoming a pain.
    they have told us that AD suffers can also suffer with Manic depresion which can cause Paronoia so they are concentrating on sorting that at the moment and his sleep pattan, which will mean mum will beable to sleep at night and will be better rested which helps everyone.
    thank you everyone for you reply's I hope you are all ok some people sound like they are at the very same point as us.
    I never throught growen up that we would be going through this when my
    Dad is 50, Mum 49, me 24 and my sister 30.
    Mishelle I hope you are feeling better today I would like to talk to you again
    THANK YOU EVERYONE!!
    Iam going to take each day as it comes and if i want to cry, cry!
    :rolleyes:
     
  20. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Lynz, well at least things are getting sorted. It is good to know that the people looking after your Dad are concerned about you all, especially your Mum. Sounds as if you should be able to work with them to get the best care you can for your Dad and all the help your Mum needs. I am glad the pressure is off a bit for you all. It must have been awful when you met up, seeing your Dad so upset and everything. I really hope things will now even out a bit for you all. Love She. XX
     

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