1. MJK

    MJK Registered User

    Oct 22, 2004

    My mother has the early stages of dementia, we’re waiting for her to be assessed to get more info. From what we know she has appalling short-term memory, poor judgement (e.g. re money), forgets words for things, makes up things that people have “told her”; so many things. My father died last year (I previously posted about him, he also had dementia) so now my Mum lives alone. Whilst she is coping fairly well at the moment, we are obviously worried about how she will manage as the dementia progresses. None of the family live particularly close, the nearest is over an hour away and myself and my brother are over 200 miles away. My Mum has absolutely no idea that she has any sort of problem and we don’t intend to tell her.

    What we’d really like at the moment is if she could get daily visits of some sort in her home. Is this the sort of thing social services will do? We don’t mind what the pretext for the visits is, just so long as a responsible person can check on her. What support is available for someone who is extremely fit physically, just who doesn’t cope in a crisis (real or imaginary). Does the medical assessment have to be done before she can get any help? Mum’s doctor seems supportive, but nothing seems to be happening very quickly as far as assessment goes!

    So far the doctor has done blood tests, these came back clear She is going for an ECG, and we are waiting for an appointment at the memory clinic. What would the blood tests be checking for? Is it just to check there are no infections that could be causing confusion or can you actually diagnose certain sorts of dementia from the blood? Likewise the ECG, is this to check that the heart is pumping enough blood to the brain? At the memory clinic wil they just be doing the MMSE or is there more to it than that?

    As for the future, we don’t think Mum will be able to cope in her current home for too long (it’s a 4 bed-roomed house with a big garden). She is adamant she won’t leave so we’re not attempting to persuade her just yet. What type of accommodation is available where she would have some support but could basically be independent? She is nowhere near needing a “home” at the moment. How do you find out about this sort of housing?

    Also, when is the best time to plan for her to move out of her own home – while she is reasonably ok and can be persuaded, or wait till the situation is so bad she is forced to move? Is moving her from her own surroundings likely to make her worse? We’re considering the possibility of moving her near to one member of the family so it’s easier for “us” to support her but unfortunately that would mean away from her friends. However from what we can see, whilst longstanding, none of these friends seem to be giving much actual support. Though I guess it’s a difficult situation to get too involved in.

    Sorry for so many questions! We’re really just trying to get as much information as possible so we can try to make some plans for her. We ideally want to be able to present her with some sort of positive scenario when we suggest leaving her home. There’s been a big family crisis lately (ongoing) which has caused a huge amount of stress and definitely hasn’t helped my mother. Maybe if this is resolved in some way she will be able to cope better for a time, but I know at some point all these issues are still going to need addressing.

    Thanks for any answers you can give. The help is much appreciated. I’m sure I’ll think of more stuff to ask!

  2. SallyB

    SallyB Registered User

    May 7, 2005
    #2 SallyB, Jan 20, 2006
    Last edited: Jan 20, 2006
    Hi Mary,

    I am new to TP my self but have had to get my Dad help as he lives alone and i couldn't cope. Although he appears to be quite fit and able bodied he wasn't caring for him self properly. One of the problems was that he thought he was doing 'everything' but in closer inspection he was managing very little.

    Anyway i hope some of this helps, I had to constantly badger people to get a diagnosis as i couldn't get Social Services involved until he had a diagnosis. I do mean badger i found out where the GP had sent the referal and kept calling. The CPN told me that it was done on a need basis so i just kept explaining Dad's need!
    (before diagnosis they sent a helper to do an assessment, after it was a social worker!) Eventually i called the Duty Social worker in Crisis and we started to get help. Originally i said i only wanted someone to call in the mornings to check on Dad as he was not answering the phone to me. He now has a visit every morning for an hour and every evening to help prompt his medication.

    Before diagnosis I contacted Age concern to see if they had a gardening service as Dad couldn't manage it himself. A really nice lady came out to see us and appplied for Attendance Allowance for him. The form is a mine field if you don't know what you are doing! He got the full rate mainly at that time because he got up several times in the night to use the toilet. She also put me in touch with the Home Help service Initially they did some cleaning and went for a walk with him and the dog twice a week. Now they visist daily (you have to pay for this) they will do anything from cleaning, cooking, taking people shopping or companionship etc.

    Also there is a 'sitting' service for people with dementia in our area. There are eight hours available each week per person (free) so Dad has a lady come and keep him company for two hours one afternoon. They used to go for a walk but now Dad won't go out she walks the dog and then sits and has a cup of tea. Again she would go out with himie to the garden centre etc buut Dad has gone past that stage now.

    Well Mary i think i have said enough! Hope this helps, one last thing in my experience keep chasing people up if you think yoou are entitled to something for your Mum as i found nobody came knocking and offering!

    Take care and Good Luck


    P.S I have since found out about some sheltered accomodations where there are carers around 24hrs. A bit more help than warden controlled i believe. Too late for Dad now as they say he wouldn't cope with the move. Wish i had known five years ago thoough.
  3. Mary - have you checked out the factsheets provided by the Alzheimer's Society?

    If so - apologies, if not click the link below:

    They may answer some of your questions for you.

    Also I highly recommend a book that gives info. for carers...

    "Who Cares? Information And Support For The Carers Of People With Dementia"
    (National Health Service, 2000)

    It provides information on respite care, Social Services, needs for Carers, etc. etc. - when I worked with a Community Mental Health Team briefly (I'm a Student Nurse) we would take these around to give free people who we saw for assessment - maybe if you can get hold of a copy (if you're unsure of who to telephone in order to find out where to get one from maybe your G.P. will have that information).

    ... Well I've just learned something too - they've updated that...

    So I'm going to see if I can get myself a copy... I'm about to email - I'll let you know what happens.

    I hope that this has been of some use to you.


  4. Whoops - apologies - I think I gave the full catalogue there!

  5. MJK

    MJK Registered User

    Oct 22, 2004
    Thanks for all the replies. I'm gradually ploughing through all the factsheets to see what I can learn. I have also ordered a opy of the booklet mentioned by Dearth - thanks!

    What I'm finding difficult at the moment is knowing whether to concentrate on the present situation i.e. pushing for assessment and support for my Mum now. If she is to stay in her own home for any length of time she definitely needs regular support. Or to take a more long-term view and try to find her some sort of suitable accomodation where she will have some sort of resident support e.g. warden controlled flats etc. Though I honestly can't see her being too keen on that at the moment. She's under 70 , and I'm pretty sure she doesn't see herself as an old lady who needs looking after! How have other people managed? have you been able to keep your loved ones at home with support right up until they needed full time care? Or have you used warden controlled accommodation as a stepping stone?

    My mind keeps going round in circles thinking of what to do for the best! It all seems so complicated to get any help. Help available seems to depend on where you live, how supportive your GP is, and how hard you push for it!

    Anyway, thanks again to all of you who have taken the time and trouble to reply. It is much appreciated.

  6. Glad to have been of assistance - I ordered one for myself, and for the Ward I'm currently working on... so a THANK YOU for posting this, because if you hadn't, I wouldn't have checked the link and seen the update - so you've done me a favour.



  7. suptowngirl

    suptowngirl Registered User

    Sep 19, 2005
    ;ots of Questions

    Hi Mary,
    My mom like yours lives alone. You need to get in touch with Social Services to arrange a carer. They will appoint your mom with a Social Worker who will come out to assess her. You can then arrange for a carer to assist your mom in daily " chores". They use agencies for carers and you will have to pay but you will be given lots of info. Find out where your nearest A D centre is as they will give you VERY useful information.
    Hope this helps in some way
    Best Wises

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