1. Lin

    Lin Registered User

    Mar 12, 2005
    8
    Hertfordshire
    hello everyone. My husband michael is 62 and has AD for seven years, he is now classed as having severe AD. After having a big seizure last April he is now unable to walk ,but with the help of hoists and a specially adapted room at home in his own way he is as happy as we can make him, although we will never quite know as he cannot talk.This is just a brief insight into our lives. I was so glad to have found this forum, it has made me laugh as well as have a few tears,but thats life.Looking forward to getting involved with all you lovely people .

    lin
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Lin, and welcome!

    Thanks for bringing us up to date with your story - another Early Onset person.

    Do please post if you think we can help you - or if you think you can help us!
     
  3. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    Hi Lynn Your Situation Is Very Similar To Mine All The Same Problems ,and The Same Age And Lenght Of Time ,but Added To This My Husband Has Become Aggressive ,and With Tablets To Sedate Him I Do Not Have The Strenghth To Move Him About ,an Hoist Was Talked About But It Was Agreed We Would Not Have Got Him In One With The Aggression ,though He Can Hardly Walk He Can Sometimes Get Out Of Bed And Does This Within 10 Min Ofstruggling To Get Him In ,just Today It Has Been Decided He Now Needs An Emi Unit ,i Wish I Could Have Managed ,with All The Equipment But It Is Not To Be .angela
     
  4. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Lin, welcome to TP, I hope you will find the posts here useful and use the forum to help you air and share. Dementia is a tough cookie, but you are among friends here who all know how hard it is to cope with the struggle to care for our loved ones, please keep posting and let us know how you are getting on. Love She. XX
     
  5. Lin

    Lin Registered User

    Mar 12, 2005
    8
    Hertfordshire
    Hello Angela
    Oh! how i understand what you are going through.
    michael went through an aggressive time when he would not let anyone near him only me, and i had to be careful how i approached him, he was walking then and at six foot three and sixteen stone it was very hard, but since his seizures he has become more passive.
    We have two carers in four times a day (funded by us) and at the moment( whoops dont want to speak too soon) i am coping, but there were many times when i thought i could not specially when he would get up four five times a night after spending an hour persuading him to go in the first place.
    As for you wishing you could manage YOU HAVE MANAGED to keep him at home for all this time ,you deserve a big pat on the back no a medal for all your achievments, so i know how hard it was for you and still is phisically and emotionally.
    thinking of you
    lin
     
  6. janey

    janey Registered User

    Jun 29, 2004
    86
    Hello Lin
    I wonder if you would give me some advice please? My Mum (who has vascular dementia) is in a nursing home after a serious fall last autumn but Dad is very unhappy with her care and is desperate to bring her home. I noticed that you and your husband pay for carers to come in four times a day - I was wondering where you found the carers - is it agency or other resource? Also, have you any tips on how to adapt a room - eg. where did you find the special equipment you needed etc? With best wishes to you and your husband, Jane
     
  7. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    hi lin ,is seizures common for people with supposedlystraight AD ,or did your husband have vascular dementia ,?was there any signs of the aggression abating before this?i ask this because my husband is being kept at a phsiciatric unit and is not fit enough to even go to an emi unit ,the trouble is he is now very ill ,and i long to see him being nursed in the way i have tried to do,he is not bedridden but sits slumped in a chair ,constantly trying to get up ,and is in danger of falling if he succeeds,of course these places say they can not give him 1 to 1 and cant restrain him if he does ,i told them i was of a mind to bring him home and take the full care package i was entitled to ,but without the right tablets to calm him down i know it is not possible,they say they cant give him the knock out tablets any more as they soon lose there effectiveness ,i dont know yet if they intend doing any more with his medication yet so it is a nightmare watching him in this state ,i think i am longing for the aggression to calm down and then i allso would think about bringing him homethe consultant and ward team was horrified to heare me say this and said that no place was going to be good enough ,(this is true)and said i was the most hostile person they had met ?this may also be true but i am still fighting to get the best for my loved one ,sorry to unload all this ,but i know you all understand ANGELA
     
  8. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Angela, no answers I'm afraid, can't believe you wer called hostile?? What is going on?? Can't they see it is the situation and you fighting for the best for your loved one that is the issue, not one of hostility? GRRRRRR, love and hugs, She. XX
     
  9. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dear Angela
    welcome to TP
    I think you are really trying hard to cope ,hostile ?I can't imagine that.
    There again some consultants only like servile people,yes sir no sir three bags full sir.
    Post when you wish, someone will try to help
    BEST WISHES
    Norman :(
     
  10. Lin

    Lin Registered User

    Mar 12, 2005
    8
    Hertfordshire
    hope to help

    Hello Janey
    Hope i can help a bit, your first port of call is to get a social worker if you have not one already. Because your mum is in hospital it should in theory be easier as she will have to be assessed before she will allowed home they must make sure everything is in place first.SW will organise carers in the home and funding will be up to a number of things but i do know you will have more chance of getting continuing NHS care funding if you free up a NHS bed. I was told by the doctors that we would have more chance if i had let michael go into hospital when he had his seizures, but i fought to keep him at home and it seems like i have shot myself in the foot, but sincerely thought i was doing the best thing for michael and still do.
    Your sw will even organise the occupational therapist who organises all the equipment bed hoists etc, i have an excellent one she is very supportive and always willing to advise, she saw us through all the building work making sure everything was geared up to michaels needs, and because we were funding the whole project ourselves i had to have it right. You might have to fight for everything but dont think of things as problems but challenges this spurs me on anyway, Good luck!

    Hi Angela
    Michael does have straight AD i dont know if seizures are common in this illness but i do know two more sufferers who have them, god knows what happens to the brain to cause this.
    Michaels agression was abating slightly before this it was when he became double incontinent and i had to clean him, he all of a sudden accepted that i had to do it and life became a little easier.
    Since Michael has been ill everything has been a battle.You dont want to win popularity contest of the year but at least nobody forgets you MORE IMPORTANT I THINK.
    If they say your hostile WHO CARES you are fighting for your lives, if your back is against the wall who would not be the same.
    thinking of you Lin
     
  11. janey

    janey Registered User

    Jun 29, 2004
    86
    Thanks for that Lin. Mum's in a nursing home, because when she was discharged from hospital the sw said Dad wasn't up to caring for her at home, and she could not find enough carers to make it possible either. However, 4 months later Dad remains heart-broken that Mum can't be at home, so I'm trying to find ways we might be able to do it. She was assessed for, but didn't get, continuing care either, so whatever we do Dad will have to pay for anyway. Thanks again, and best wishes to you and yours.
     
  12. Lin

    Lin Registered User

    Mar 12, 2005
    8
    Hertfordshire
    Direct payments

    hi Jane
    have you looked into direct payments these are fairly new, but means if you get them you can organise your own care
    lin
     
  13. janey

    janey Registered User

    Jun 29, 2004
    86
    Thanks Lin - I see there's a fact sheet about this on the Alz website so will download it.
     
  14. janey

    janey Registered User

    Jun 29, 2004
    86
    Direct Payments

    Unfortunately, the fact sheet says this:
    'A person must consent to receive direct payments, or must have given consent at a time when they had capacity to do so. If a person has a registered EPA, their attorney cannot give consent to receive direct payments on their behalf; if the person’s needs change, the attorney will not be able to consent to direct payments for the new services. The person with dementia must have given consent themselves previously. '
    Mum's EPA is already registered so no chance, sadly. What a stupid rule. As if dementia didn't make life complicated enough, the powers that be kindly make it even worse!
    Will keep plugging away and as you said in one of your posts, Lin, I will look on it as a challenge!
    Jane
     
  15. Lin

    Lin Registered User

    Mar 12, 2005
    8
    Hertfordshire
    direct payment

    hi jane
    good for you girl, none of us can win the war but we can try and win some of the battles.
    sorry i was not much help but keep us all posted on your progress.
    I think and sympathise with your poor dad give him a hug from us.
    Lin and Michael.
     
  16. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Dear Jane
    If you search for a thread called “Direct Payments” started by Norman I think it was a long time ago it mentions there being two types of direct payments.
    Anne
     
  17. janey

    janey Registered User

    Jun 29, 2004
    86
    Thanks Anne - I found it, but it just confirms that its too late to apply for direct payments as Mum had to have applied for them herself before her EPA had to be registered. The attorney cannot apply. Chesca was right when she said that 'Stephen Ladyman is keen to involve Dementia sufferers in assessing their need for Direct Payment? Well, that's OK then! His fund will never be depleted, he can claim nobody is using it and absorb it into another scheme next year.' Its farcical. Thanks anyway...
    Jane
     
  18. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dear Jane
    From Booklet- Direct payments in Birmingham-general information:
    Who can have direct payments?
    Carers over 16 years and over,of disabled people aged 18 years and over,for services to meet the carers own assessed needs.
    Does this help
    Norman
     
  19. janey

    janey Registered User

    Jun 29, 2004
    86
    Thanks Norman - there must be a similar booklet for Mum &Dad's area so I will get hold of it and read it.
     
  20. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    hi janey ,continuing care ?something i have never heard of ,untill very recently ,what exactly is it ,does it mean carers round the clock or is it something to do with the payment s for care ,i had thought the most you would get is 4 visits a day ,wich would not be realistic for someone of your dads age to deal with ,as things get worse ,it is always when the carers have gone ,that problems arise ,however this is something i need to know about as i would dearly love to carry on caring for my husband at home ,just at the moment it does not seem possible .i will spend sometime to day looking at relevent web sites ,there is always something new to learn,strange how these things are neversuggested to us and we are left to find out for ourselves,ANGELA
     

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