1. kaz

    kaz Registered User

    May 3, 2004
    19
    Hi

    My dad was diagnosed with Alzheimer's last Friday after many months of tests and every doctor we asked saying it was not Alzheimer's as it would not come on so quick etc. Dad has been in hospital for 2 months now. It started with a urine infection then urine retention and gone from there he became very confused and after being admitted for the second time is still there. He has lost about 2 stone in about 2 months and as the doctors said the infection has made him get full blown Alzheimer's.

    My Nan (dad's mum) had Alzheimer's so we know from what we went through with her that he is at the later stages as he can not chew food and we have great difficultly in getting only a few sips of drink down him and only a few spoons of soup.

    We know he needs residential care as he is too confused to be left at home while the family are at work. We are wondering if we are going to be some problems because of his age he is 58. Will this affect funding/ homes that would take him. Any advice on this would be of great.

    Thanks Karen
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,560
    Kent
    Dear Karen,
    So sorry about your father, especially as he is so young and the AD has progressed so quickly.
    Try phoning the AS Helpline, they will be able to give you more help than I can.

    AS National Helpline 0845 300 0336 8 30 a.m. -7 pm
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Dear Kaz

    How awful for you all for this to have happened so quickly. I'm not sure about funding, either LA or NHS but you are right to be concerned about the difficulties of finding an appropriate home. Many will not take under 65s. You say he cannot chew/swallow. Has he been seen by a speech therapist? Because if not he should be. Also, is he still walking? You may need to be looking for a secure facility - as a relatvely young man he would find it very easy to walk out of most nursing homes. Even those with locks might be problematic as visitors will tend to assume that as he is so young he is another visitor and simply hold the door open for him (I've heard reports about that on TP).

    One would like to think that yours would be a clear-cut case where NHS funding should be forthcoming - his deterioration is clearly caused by an illness, but when it comes to such funding it's simply not possible to guess. Might he be eligible for LA funding? That all depends on his assets and income.
     
  4. kaz

    kaz Registered User

    May 3, 2004
    19
    Hi
    Thanks for the replies. I dont think he does have a speech therapist, we have a meeting arranged tomorrow at the hospital i will bring this up.

    What is LA funding?

    Thanks Karen
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    LA funding = local authority funding (AKA social services funding). The speech therapist is needed because they are the one who, I always think oddly, deal with swallowing difficulties.
     
  6. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Karen,
    I am so sorry to read about your Dad. My husband was 58 when he was diagnoised. After 4 years, at the age of 62 Peter was placed in a E.M.I. unit at a Care Home near me and fortunately three of his step-children and four Grandchildren all live approx. 5 minutes away. When Peter was first placed in the unit, we were horrified, he was the youngest there. Five months down the line Peter is one of the worst on the Unit. I know his is in the final stages but with this illness, making plans for the future, watching grandchildren growing up, Peter is missing it all. We all agree that live can throw some really bad things at us but I can just about cope with my disability and I know I could not cope without my mental health. I wish you all the best in dealing with problems around you. Take one day at a time. Do not refuse any help offered. Best wishes. Christine
     
  7. springtime

    springtime Registered User

    Apr 25, 2007
    10
    Milton Keynes
    Dear Karen,

    Very sorry to hear that your father was diagnosed with AD at an early age. Hope that you were able to get advice and help at your hospital meeting today. Hopefully you got some answers to your questions. The Social Worker within the hospital should have been able to point you in the right direction for finding suitable accommodation. Where I live there are not many homes for a person with AD under 65. But the home can apply for registration to care for persons of that age. I suggest that you and your family look at homes, visit them at different times of day, watch how the staff are with their clients. Look at the CSCI (government body that inspects homes) report on a care home, which you can access through the internet.
    Is there a support group that you can access through you local branch of the Alzheimer's society? Support groups can be invaluable; give you a carers perspective on a care home, valuable tips in caring and most importantly, people that understand.

    Best wishes,
    Springtime.
     
  8. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Early onset

    I am so sorry to read about your difficulties with early onset dementia. If your journey along this path is anything like mine was - you have a battle on your hands! There is little provision for under aged 65 people with the specific illnesses relating to Alzheimer’s disease. All I can suggest is that if you are not happy about the care being offered by Social Servies, write to your MP, and also to the Director of Social Services for your area. Patients with Alzheimer related dementia only seem to be catered for in homes which are registered for the over 65 age group. This is a disgrace. Provision should be available for ALL such patients, whatever the age group they fall into. Unfortunately as long as dementia is categorised by age groups this state of affairs will continue.

    Also please be aware when you read the CSCI reports that they are only inspecting certain areas they have been directed to. The 3 EMI units which I went to visit were an absolute disgrace – I have written about the state of affairs I found on an older thread I posted a few weeks ago. All 3 EMI units had been inspected and approved by the CSCI . They look at minimum standards only which in my opinion fall far, far short of what we, as relatives would like for our loved ones.

    I sincerely hope that your experiences do not mirror what I encountered. It does seem to vary from one LA to another in England. I have written to the Today program outlining this under 65 age group problem.
     
  9. kaz

    kaz Registered User

    May 3, 2004
    19
    Hi
    We did not get to have our meeting on Thursday as the hospital canceled it as they have decided they want to wait until they have a response from the phyciatrist who we were waiting to come and see him before the diagnosis of AD but then said was no longer needed and now decided they wanted to wait for him to come so another delay in getting thing sorted.

    My mum did manage to talk to one doctor, to see where he is at as from what we went through with nan we know he is at the later stages. He agreed but went on to say it will not be the AD that kills him but something else. He was weight the other day and has lost a few more pounds which with the weight he has already lost he can not afford to lost anymore. The Doctor agreed saying he cant go on losing as the rate he is.

    Thanks for all your replies and will update as soon as we know more.

    Thanks Karen
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    It's not much comfort, though, to be told the AD won't kill him. After all, would he be losing the weight and be so ill if he didn't have AD? I don't think so. My husband has leukemia and I doubt that will kill - what will kill him is an opportunistic infection that he contracts when he has no functioning immune system. I don't think it'll be much comfort for us to be told it wasn't the leukemia it was pneumonia, when if he hadn't had leukemia it would just have been a case of the sniffles.
     
  11. springtime

    springtime Registered User

    Apr 25, 2007
    10
    Milton Keynes
    Early Onset

    Dear Tina,

    I am very sorry to that you have experienced such difficulties finding appropriate accommodation for your loved one.

    I do agree with you that there seems to be a lack of suitable accommodation for the under 65's. There should be not be an age barrier when trying to find a care home. Though I do feel that people under 65 years of age want to be with other people of that age group.

    I have come across some excellent care homes in my work, where the careworkers are trying their best to care under difficult circumstances.

    I feel very strongly that what we need is more carers per clients working in care homes. If there were more carers available to care then they could give more quality time to people. Is that much to ask for? Staff would be more relaxed creating a happy atsmosphere which would bring comfort and security for clients which inturn would benefit the families. Don't people needing care deserve that? I hope that when it is my turn, that the staff ratio will be 4:1 and I mean careworkers:clients, not including the domestic staff/cook, etc. All staff have their valuable part to play in caring within the care environment and each person can bring their own personality and kindness that makes a happy care home.

    What would solve a lot of these problems that occur in the care home is install a solid foundation of kind and caring staff and making sure that there is plenty of them!! That they are on adequate rates of pay including sick pay and not working themselves to the ground. I can not stress this enough - I hope that someone out there will do something about it - you know what they say - people power!!
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Springtime,

    What you are describing sounds ideal, and what we would all like to see for our loved ones.

    Unfortunately, most care homes these days are run by large businesses, and have to balance the books at the end of the year. If they employ more staff, and pay them more, they have to put up fees to cover the difference. Then local authorities refuse to pay that amount for funded clients, and self-funders can't afford it, so there are empty beds and the home has to close.

    I know there are some very bad homes around, understaffed, scruffy and smelly. But I think there are also some excellent ones, which take a real interest in the welfare of the residents.

    You just have to find them!:)

    Good luck,
     
  13. kaz

    kaz Registered User

    May 3, 2004
    19
    Hi

    Can anyone help us out. My dad has lost a few more pounds this week and is now just over 8 1/2 stone he is skin and bones and is very uncomfortable in the hospital bed as he is lying on his bones as he had lost all his fat etc. We spoke to the doctor to see if something could be done to help him he said he could have a special mattress. He had still not got it the other day so mum spoke to the nurse about it only to be told he could not have it as he does not meet the criteria for the special mattress. She said she had informed the doctor of this as well. What i want to know is there anything we can do about it, why should he be uncomfortable when there is something in the hospital that would make him more comfortable. If the doctor thinks its the right thing for him and its siting on the empty bed opposite why cant his life be made better. Can we complain to someone??

    Any ideas would be very helpful as we don't know where to go from here.

    Thanks Karen
     

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