Can someone advise me please?

Discussion in 'ARCHIVE FORUM: Support discussions' started by lyn, Aug 24, 2005.

  1. lyn

    lyn Registered User

    Mar 7, 2004
    25
    surrey
    Hello everyone, hope you are all keeping well. I haven't posted here for quite a while, all was quiet & settled with mum but things have suddenly taken a nose dive. Mum attends a wonderful day centre 6 days a week. The drivers who pick her up have been worried about her as shes all of a sudden totally confused, doesn't know how to open her front door so tries to post her bag through the letter box to give them her key. She has become incontinent at night & doesn't make the toilet so her house reaks of urine. Sis & I have a friend who goes in once a week to clean (everything) but we need someone more often now. Sis works full time, I'm physically challenged. We are considering a live in carer for mum, she has some savings but these wont last long so my husband is considering buying a part of mums house (to give her say £30.000) to help pay for her carer. Like you see on TV to release some assets, all legally binding. I have a niggle at the back of my mind that says if mum needs to go into full time care they will take her house to pay for it anyway & not consider our portion as it would be seen as us trying to diddle them out of a portion of her house sale. Is that true, would we loose our money? I'm beside myself with worry Mum is to "with it" to go into a home even though she has deteriorated she loves her house & knows where she is. Does she move in with my sister & we rent out her house. I'm totally at a loss. Can anyone advise me. Are we legally allowed to buy some of mums house? Lyn
     
  2. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Lyn,

    Sorry to hear of your current dilema. Does your mother have a social worker? If not, it would be a good idea to get her one and quickly (here's hoping - but it can be done in priority cases). A good social worker can help you to arrange help in the home and work out what your mother's entitlements are.

    Calling the Society Helpline is a great place to start to find out your rights. I am fairly sure that you should not have to buy a share of your mother's house to finance her care.

    Have you set up an Enduring Power of Attorney? If not, you might want to read the fact sheet here:

    http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_epa.htm

    Take care,

    Sandy
     
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Lynne, so very sorry to hear your Mum has gone downhill a bit more. This is one of the most testing times I found. They are too with it to let you take over, but not with it enough to manage without help. My M-in-L is at the same stage. Last week she wouldn't accept that she should keep her medications safe in one place and use a dosset box. Yesterday, she told my S-in-L that they were ALL the same anyway!! They are most definately not and it is now extremely worrying for us all as we try to reason with her to let us do her a weekly dosset box.
    As Sandy says, POA is a must, I do hope the helpline will be able to advise you on the house, do make sure that it is all OK to do before you part with your savings. I am not sure of the legal side of things, but I do know SS have far reaching powers so be careful please. Let us know how things go, keep posting, love She. XX
     
  4. zed

    zed Registered User

    Jul 25, 2005
    76
    London
    It sounds like you should get legal advice on this, you could contact your local Citizens Advice Bureau, local Law Centre or local legal advice centre.
     
  5. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Lynne
    speak to AS helpline,read the leaflets and then please get a solicitor.
    You do need legal guidance, as your problem seems to be complicated.
    Norman
     
  6. sequoia

    sequoia Registered User

    Jul 3, 2005
    19
    London
    Care at home

    It might also be worth asking social services what sort of home care support they could offer. As far as I am aware they do have some sort of duty to care and there is a policy (perhaps different around the country) of keeping the person with dementia in their own home for as long as possible.

    Good luck with it all.

    Best wishes
     
  7. lyn

    lyn Registered User

    Mar 7, 2004
    25
    surrey
    Thanks to all who replied, I'm driven to tears at your kindness. Things have gone from bad to worse, mum had a fall and the ambulance men who pick her up for her day centre dressed her arm. She doesn't know how it happened. Sis went to see her and was shocked with what she found. Mum has aged 20 years in less than a week and she is bright yellow. She can't stand/walk. Sis has called an ambulance and is taking her to casualty. So, I sit and wait for the phone to ring to let me know what's going on. I'm desperately worried as you can imagine. I so wish I didn't have this bloody wheelchair, I would be with her too but sis has enough to worry about for now. I'll keep you posted with how things go. Lyn
     
  8. Dawnb

    Dawnb Registered User

    Mar 2, 2005
    30
    dublin
    Dear Lyn
    Very sorry to hear that things have gotten worse again. It must be very difficult for you not being able to go there but I am sure your sister will do her very best to see that your mum gets the best care. Will be thinking of you and send you a hug.
    Dawn
     
  9. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Lynn, so sorry to hear about your Mum's fall and her present health problems. Although you couldn't be with her at the hospital, I am sure both she and your sister know that you will give all the love and support you can. My son is in a wheelchair and so I know the frustration it can cause when things happen. I am sure you are like him, when we have troubles, soon as he hears the car pull into the drive he is switching the kettle on, the cups are out and he is there to listen and support as much as he can. Just by coming onto TP and getting information for your family, you are helping a lot too. Dont be too hard on yourself my love, you are doing your best, that's all any of us can do. Let us know how things are soon please. Love and hugs, She. XX
     
  10. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Lyn,

    Really sorry to read about your mum's fall.

    While she's in hospital she can be given a thorough check-up (you implied that her behaviour had suddenly changed recently?) and her needs assessed. Hopefully there will be a care plan put together with input from her medical team, a social worker, you and your sister and your Mum.

    Your first post on this thread indicated that you had already reached the conclusion that she was perhaps not able to live alone any longer. Now you will have other people to help you map out the right type of support for the future.

    Take care,

    Sandy
     
  11. lyn

    lyn Registered User

    Mar 7, 2004
    25
    surrey
    Mum was admitted to hospital Sunday. They discovered she has a rapid heart beat so eventually kept her in, they were going to send her home. The SS are going to do a care plan but they keep asking her questions which she answers incorrectly. Can you cook?- yes, can u make a cup of tea? - yes can u shower/bath yourself? - yes. They shouldn't be asking her, shes VERY convinsing. She is no longer able to do any of these things. Her oven is full of plates!! I hope they consult me before sending her home, sis is on holiday now for 2.5 weeks. I have an electric wheelchair so am going to get a Taxi to take me to and from the hospital as they have ramps. I do drive but can't get my manual wheelchair out of the boot so Taxi will do. I'll let u know how things go. Lyn
     
  12. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Why do SS insist in asking the AD sufferer questions like can you cook?
    do you do your own housework? etc etc.
    My wife who now cannot do any of these things will answer yes to all that type of question.
    We have had one or two hairy moments when I have had to say "no you can't "
    and in return been called a liar.
    I am sure that SS take the word of the carer but why cause the embarrassment in the first place? :confused: :( :( :(
    Norman
     
  13. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Lyn, sorry that you are experiencing such difficulties........have to agree with both you and Norman, why do they ask our loved ones?
    Speak to Lionel and "he still does the crossword each day, goes to the library etc"
    harsh looks and temper tantrums when I have to correct him........Sometimes you cannot win. Connie
     
  14. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Big hug for Lyn ...

    Oh Lyn, I do SO feel for your distress & frustration. If it's any comfort, the average so-called "able bodied" carer (son/daughter/husband/wife) usually feels just as helpless & frustrated at not being able to help our AD beloved. The hard work (as shown so many times on this wonderful board) is getting to grips with the problem and finding solutions with the help of those who are already further down this horrid path. So much of the support (both of the AD patient, and what you read in this forum) is emotional anyway ...

    The fact that the patient gives the medics/SS duff information is, I think, taken with quite a pinch of salt by them, but the questions/answers are still a useful part of their assessment, since it gives them some idea of how much grasp on reality the AD sufferer has (or hasn't) got. Whilst I know all too well how disapproving Mum can get when you have to contradict her, certainly give them your side of the situation, and what your Mum cannot do (even though she like to think & say she can) and work together with them; don't automatically feel they are "the other side". It's easy to get defensive, I know!

    AND :cool: isn't it bl**** marvellous that an AD loved one can't remember what was said 5 minutes ago, but will not let go of the fact that "You embarrassed me in front of the Doctor" for WEEKS afterwards!
     
  15. lyn

    lyn Registered User

    Mar 7, 2004
    25
    surrey
    Once again thank you all for your replies its much appreciated. Mum is still in hospital very confused but unusually comforted at being looked after. Mum told the SS that she didn't need their help so they said "OK" & left. OMG I was furious. I phoned them & explained that Mum would say anything they wanted to hear, she is very crafty & can cover things up to suit. luckily I can read her like a book so warned them not to do anything without checking with me first. We now have a care plan in place thank goodness. Mum wasn't happy at first but I just told her it was 'temporary' until she was better. Luckily Mum does what I ask of her, she trusts me totally and even though I correct her answers that are incorrect she never has a go at me - bless. She still seems to understand that I only want the best for her. Doesn't it break your heart to see your loved ones so frail and vulnerable, mum has started to get the glazed, vacant look in her eyes now - geez its killing me. Shes having another CT scan tomorrow & maybe she'll be allowed home this week. She keeps asking to go home but I've told her her heart is broken and needs fixing - bless, she says "oh, ok". I mentioned getting a Taxi to take me to see her. NOT ONE taxi would take my elec w/chair. I've had to hitch a lift with my cousins. So much for being independent. Anyway, I'm seeing her tomorrow so I'll keep you posted. Lyn
     
  16. lyn

    lyn Registered User

    Mar 7, 2004
    25
    surrey
    What a bomb shell! I was told today that they suspect mum has bowel cancer, spread to her liver and lungs. They need to do more tests to make absolutely sure but they are pretty certain. Flippin heck, isn't altzheimers bad enough? I don't know how I feel, I'm numb. She was told also but doesn't understand and when the doctor left said "so I'm getting better". They will be speaking to Marsden to find out what can be done. If they move her to another hospital that will really confuse and upset her. I'm not sure what is happening to the SS care plan now if she goes home, surely she needs nursing care not SS? My mind is spinning. Lyn
     
  17. KarenC

    KarenC Registered User

    Jun 2, 2005
    122
    Los Angeles, USA
    Lyn, I'm so sorry to hear your mother may have cancer on top of her problems with dementia. :( Thinking of you....

    Karen
     
  18. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Lyn,

    I can certainly sympathise with your unexpected and difficult news. When my family eventually "tricked" my father-in-law into seeing the GP one of his symptoms was tiredness. We thought that this could be some symptom of depression linked to the AD.

    Luckily the GP was very thorough and we found that in addition to mixed dementia (AD + vascular), my father-in-law also had myeloma, a type of cancer that effects the cells of the bone marrow. Just like you this was a terrible bolt from the blue.

    The most important thing that we have found is to clearly discuss options with doctors, keeping overall quality of life at the centre of the discussion. In my father-in-law's case, as a frail 84 year old who hates doctors and hospitals, this has resulted in palliative care rather than agressive treatment for the myeloma. The standard treaments for myeloma - bone marrow transplant or chemotherapy- were seen as too painful/risky given his state of health.

    Presently my father-in-law is at home and is being looked after by my mother-in-law and some visiting care staff. A year or so after his diagnosis he is still mobile (within the house and garden) but frail. There are so many unknowns regarding his health, but we have tried to cover as many possibilities as we could. For example, his name is down on the list for a care home that provides nursing care and is licensed for patients with dementia. This place may never be needed, but we thought better to have it in reserve.

    Your mum's Social Worker will still be a key figure in helping your and your family explore care options.

    You might also want to read the Alzheimer's Society's fact sheet on something called Continuing NHS Care which may be relevant to your mum's care:

    http://www.alzheimers.org.uk/Caring..._and_nursing_care/continuingNHShealthcare.htm

    I know this is a difficult time. As Norman says, day by day.

    Take care,

    Sandy
     
  19. icare2

    icare2 Registered User

    Jun 18, 2006
    84
    scotland
    telephone the AD helpline they will put you in touch for legal advice

    I like you have left it too late,but telephone the AD hotline,and they will give you your local solicitors that deal with this,for advice,,all the best..
     

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