we now know what it is

Discussion in 'ARCHIVE FORUM: Support discussions' started by panda, Mar 27, 2007.

  1. panda

    panda Registered User

    Apr 16, 2006
    The dredded hospital appointment was yesterday,I have been too upset until now to speak about it. Mum has vascular dementia,the doctor has recommended that she goes into resedential care because every one agrees that if Mum went home she would soon start drinking... Mum is absolutley spitting mad she is telling everyone I am evil and making it all up. She thinks the doctor is an idiot and there is nothing wrong with her. She is insisting she wants to go home. The doctor said she can not be made to go in a home but if I can persuade her it would be good. Today I have spent all day ringing local homes only to be told they have waiting lists or they do not take people with dementia. Today i went to see mum and she was telling my aunt about her evil nasty daughter (me) I spent an hour telling her I would find somewhere nice where she could live and explaining she is not well and needs a little extra care. She listened and seemed to understand then asked if she will be home by the end of the week. The doctor has agreed to keep her at the hospital for a week while I try to get things sorted out. How will I manage all of this in a week. Also will I still be able to post on this site now we know she has VD and not AZ . Also SW told me the doctor is not being completly honest he is the one that should be telling her she can not go home.
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    #2 Margarita, Mar 27, 2007
    Last edited: Mar 27, 2007
    Oh bless , take a deep breath of course you still be able , this site is for all dementias not only AZ xx

    I can’t see how your going to find a home in a week , no wonder your so worried


    Your mother never going to see the logic in going to a home , and it look like social worker is pushing it on to the doctor , because no matter who tell her she not going to listen , if she does not want to go .
    someone will, I am sure pop in with good advice how to get around this
  3. Kayla

    Kayla Registered User

    May 14, 2006
    Dear Panda,
    I'm really sorry to hear that your mother has vascular dementia like my Mum, because it is a truly awful disease. My Mum wanted to go into a care home, so that was no problem, as she knew she couldn't cope with her rheumatoid arthritis. It was more difficult when she fell and needed nursing care.
    The care home could no longer cope with her needs and I asked if they could recommend anywhere. To be honest, there are not that many nursing homes which also offer EMI care and some of them were quite a distance away on the A2 route, which is a nightmare.
    A local home had a vacancy and the two homes communicated with each other so we were able to move Mum within a week. Once she was in the nursing home, she did seem to improve and they worked hard to find the best medication for her, as the steroids she needed for the RA affected her other drugs.
    Since the hospital probably want your Mum to leave, why not ask them for help and recommendations. I don't think Mum would have found a place so quickly, without the help of the care home, as the nursing home never seems to have spare rooms. They are filled really fast.
    I wish you luck with your search and I'm sure you'll know whether a home is suitable or not for your Mum.
  4. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Panda

    I'm so sorry. You knew your mum should not go home, but one week is a very short time to arrange a place for her, and persuade your mum to go. I do think it's a bit unreasonable of the doctor. What do they propose if you can't get anything organised in the time? And what about the fundidng?

    I think it might be worth having another word with him and telling him how difficult you're finding it. I know beds are at a premium, but that's ridiculous.

    As for posting on TP, of course you can. I would guess at least half of the regular posters are dealing with VD as opposed to AD. You're always welcome here.

    Let us know how you get on.

  5. Clive

    Clive Registered User

    Nov 7, 2004
    I was told there was a long waiting list at the home I wanted mum to go into, (though they did have an empty room that they showed me as an example of what was provided.) I said I would put her name on the list but was looking for somewhere straight away. That was on the Tuesday.
    The home rang me on the Friday and told me that none of the people on the waiting list wanted the room and mum could move in straight away.

    So do not give up. AND do not let the Hospital push you into doing something when YOU are not ready. (I know it is easier for me to say it than for you to do it)

    Best of Luck
  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    You're going to have to stand very firm on this - if they think they can dischargejher with no come-back on them, they will do. You'll have to make it absolutely clear that you can't be responsible for her care: then they'll be forced to look at the whole picture. It makes (or should do) no difference if you're self-funded or not, but there is an inclination for them to let self-funders get on with it. Stubbon refusal to cooperate on your part is they way to go (if you know what I mean).

  7. Lucille

    Lucille Registered User

    Sep 10, 2005
    Dear Panda

    Sorry to hear about the diagnosis. You have my sympathy as my mum has VaD too. Although not at the same stage as yours, she is very 'changeable,' shall I say?! I too, am the daughter from hell, on occasion!

    It must be very difficult for you trying to cope with your mum and the ridiculous time scale you've been given. As Jenniferpa said, you must stand firm.

    If there's one thing I've learnt in the last few weeks is that SS and other services will let you get on with it. The other week, when I just felt I couldn't manage mum's moods anymore I rang the CPN in tears and she offered help straightaway.

    Stick to your guns. Will be thinking about you and your mum. Let us know how you get on.
  8. panda

    panda Registered User

    Apr 16, 2006
    Thanks again a big sigh of relief that I can still post here. I feel like I know you all now. Mum will have to be self funding and that is something I will have to worry about later!!! I work with parents with mental health issues and their children and there are now all kinds of guidelines in place to protect and support them. Also thousands of pounds spent on different services. This is rightfully so ,but I wonder when these will be put into place for our older vulnerable parents, grandparents. Sorry I am getting cross now.
  9. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    I'm not surprised you're getting cross, Panda. I don't think anyone here would blame you, or disagree with you.

  10. lawbore

    lawbore Guest

    You need practical help

    After reading your posts I am wondering has no one told you that with a diagnosis of vascular dementia your Mum is entitled to have her care paid for in full by the NHS rather than her being self-funding?

    This is called Continuing Care and you can apply for it by writing to your Primary Care Trust. The hospital cannot legally discharge your Mum from hospital until NHS Continuing Care has been set up for her or alternatively, a care plan has been put in place by the Social Services Department of the Local Authority to which your Mum and you consent to and are satisfied with.

    So there is no need whatsoever to feel any pressure. And no one in the medical service or the social services should be putting you under any pressure. In fact the reverse should be happening, you should be putting them under pressure!

    You and your Mum have a right to be advised of her eligibility for NHS Continuing Care also by the NHS and it would appear the NHS has seriously failed you and your Mum in this respect.

    There are very few suitable homes and the experts at the NHS and the SS know where they are and should give you a list.

    I am going to recommend you to a few sites you can go to where you can get practical help. There are people there with a great deal of expert knowledge who will rush to assist you with the practical side of things.

    http://www.fightthebureaucracy.co.uk (a campaign for Continuing Care)
    http://www.gpss.tripoduk.com/nhscare/ (the NHSCareInfo site)

    There is also a very good forum devoted purely to the subject of NHS Continuing Care where people post most days:


    I hope others reading this will give these sites a go. Nothing against the Alzheimer's Forum which is a wonderful support with so many posters with good ideas on how to cope with relatives with dementia (some are on your thread here). But I recommend these other sites for when the going gets tough on the legal side.
  11. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    Although many people believe that people with ALL forms of dementia should be receiving continuing care, sadly it does not appear to be the case for many, my mum included - who also has Parkinson's disease, epilepsy and is confined to a wheelchair after breaking her hip. Although I don't know the statistics, if I had to hazard a guess I would say that most people with dementia aren't on continuing care.

    Whilst I would encourage anyone who wanted to apply for continuing care, and who wanted to fight on if it was refused, I would say it is not a fight for the faint hearted. It is also not one I personally have had the time or energy to start.

  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I agree, and it is by no means a certainty [in my experience] that anyone will easily get Continuing Care as a right, no matter how justified it is, and what any web site or even PCT documentation may say.

    Nevertheless it is a target that is obviously worth attaining, and that people with dementia and their families should have available to them.
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    The subject of Continuing Care is such a critical one, and one fraught with misinterpretation from all sides - so I have asked Alzheimer's Society for a quote for this thread, about their position:
  14. x-lauren-x

    x-lauren-x Registered User

    Mar 6, 2007
    awaiting results :(

    i know how horrible the hospital appointmets are, my friend is currently waiting the results of his brain scan. He had the scan months before christmas and today his neice went to take him to the hospital for the results. The doctor had refused to send the results in the post so we had to wait until now, when an available appointment could be made. today was a mixture of emotions really, i didnt know whether to hope something was diagnosed so my friend could get the help he needed or wheter to hope nothing was found and we continued the struggle we have at the moment. So coming home today was a bit of an unusual feeling, i was nervous for my friend but was deserate to know what the problem was and how we can help and get the treatment needed. However, the appointment was cancelled at the hospital. Another has been arranged for next week and i feel so angry, we have tried to help our friend out for several months now, he doenst recognise me most times and i feel upset thinking i will be leaving him to manage alone when we go home. it seems so unfiar that we have had to wait this long, the doctor refused to tell us the results over the phone, or to post them, or to make an appoitment a couple of weeks after the scan. Waiting until now to be found we cannot have the results for another week has upset and annoyed me so much. I know that my friend is at home alone trying to manage , we help him as much as possible but its so difficult to make him feel happy and well.
    I know this msut sound terrible, but a few weeks ago a football player was injured, he had the results of his brain scan the next day, he is young, got good memeory, fit and able bodied . but then our friends and relatives are waiting months on end to recieve the results when they are left suffering until an available slot can be found. i know that thw football player should be treated well, but so should our friends and family- our relationsa re jsut as important to us as the football player is to his family. If we are all equal, why are some people more equal than others?
    sorry for such a long post, i just wish that we were treated with some more respect, if football players can get their brain scan results the following day, why can't people suffering from memory loss and other conditions get theirs equally as fast? it is so sad to see our friends suffering and waiting until next week to get the results seems such a long time. another week of being worried and waiting for the results. The irritating thing is, i know the results are there- at the hospital, but nobody can find a minute to tell us what is happening.:(

    Thank you so much for reading, any opinions welcome and apprechiated :)
  15. panda

    panda Registered User

    Apr 16, 2006
    Thank you all for your advice and support, so far all I have done is lok at some homes, I will have nightmares forever after the things I have seen. In one house I was told they dont use the garden because once they get here they lose the will to live anyway....I did manage to fid somewhere nice but they have a long waiting list, Mum is still saying when am I going home and the hospital have said nothing.. I went to see Mum on saturday morning and the nurse told me she is worse when I visit.. Saturday night I think I had a mini breakdown crying and screaming I cant cope any more!!! No I do not know if I should visit or not and I am going to let the hospital make the decision on what happens next.The social worker said she will visit today to try and find out what is happening.
  16. suzanne

    suzanne Registered User

    Jul 25, 2006
    good evening panda, Whilst social services help, you should see your Gp for you, I had the screaming abdabs last week and my Gp was great,remember the hospital can not discharge a patient unless they have somewhere to go.....
  17. Dave W

    Dave W Registered User

    Jul 3, 2005
    Sorry to hear your circumstances

    Hi Panda

    sorry to hear your news, nd I can imagine how you're feeling - I was in exactly the same situation last January. The next few weeks will be tough, but I hope that people here on TP can help you to get through them.

    First of all, your Mum's in hospital as that was judged to be in her interest. Why releasing her without a care plan in place may have entered thei heads is beyond me, but do point out to them that it's almost certainly illegal for them to do so. If need be, very firmly ask for a copy of their complaints procedure. And ask loudly too. (It buys time, if nothing else - I had to do that, even though I never actually made a complaint.)

    As I recall, a hospital cannot legally release her without formal care plan - be it at home (hers or yours) with external agencies or delivered in a residential home - in place. A home won't take her without reviewing the care needs assessment, andyou don't mention even having one of those. Ask for it now. The home will need to see it, whether from you or the hospital, and it will help you to discuss her needs with homes that you speak to. (Mum's hospital willingly gave me several copies.)

    They can verbally put on as much pressure as they like, but they won't reduce the waiting lists, and they should now that. They shouldn't be willing to realise her till they are satisfied that the home is appropriate, and you have every ground for complaint if they do anything else. Stand your ground - you are having to take major decisions about your mother's care and the reaminder of her life (and a large chunk of yours), and you have a right to help, not pressure.

    The CSCI website is useful for finding homes and reading formal assessment reports of them, but visit as many as you can. Phone out of politeness, but any home that won't let you visit day or night should be questioned as to why. And take a good look while you visit - what is the general mood and feel, how well dressed and groomed are the residents, is the place clean and tidy and odes it smell fresh. All these things are important. There's a factsheet or two on the AS site that will help you.

    And stat checking what's needed to help you cope with the financial situation - I hope you have Power of Attorney over finances if she's going to be self-financing.

    There will be lots more to ask for us to try to answer, but ask away. Several of us have been through this before, and we know how much help is appreciated.

    Good luck, and keep posting.

  18. panda

    panda Registered User

    Apr 16, 2006
    Hi everyone spoke to social worker yesyerday she said she spoke to the doctor yesterday and he said Mum could go home with more help, also they need her bed back in the next couple of weeks. I just do not see how this would work now and think they are just saying this so I have to make the decision. Last night mum said she had just had a lovley meal cooked by the lady that owns the house. As I left she said the food here is rubbish why cant I come home with you now, when I told her the doctor would have to tell her when she could come home she said why I am not in hospital. How could I let her be at home all day not knowing from one minite to the next who she was letting in. I watched crime watch the other night and realised how vulnerable my Mum is.... Today I am going to visit another Home in a different area as I suddenly realised if I place her to near to her home she would probably try to go back there. My brain is so full of all the information I have been trying to take in I am no longer able to work out simple problems and I am doing some stuid things. To top it all my aunt rang me to say I am not to sign anything and put mum anywhere until she has been to see it. When she has had hardly anything to do with the family for years. I will ask hospital about mums care plan and I wish there was a complaints procedure against family.
  19. Faith

    Faith Registered User

    Jun 18, 2006
    Wash away the fear


    No one can imagine what you are going through. I can not begin to understand. All I can say to you is to "TAKE ONE DAY AT A TIME". Be kind to yourself. Mum does not hate you, it is her way of coping with this wretched disease. She does not compute things in her head the way we do any more. My mum has vascular dementia too and it goes in waves..........unfortunately now it is down more than level but I try to think of good things and times when I am feeling low. It isn't easy, but if you can wrap yourself in a big bubble of love everytime you visit or deal with this sad senario it may help. I consciously do this now. I think just like a placebo the mind over matter side works for me. It's like the hurt can not penetrate the love bubble and I don't think I am imagining it but things seem to settle down around me. You can only try! I send you my love and my concern for both you and your mum.

  20. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Panda, it's not surprising. You've had so much to process in the last few weeks.

    Could you give yourself a day off? A spot os retail therapy, a day at the seaside? If you can switch off for a while it will give your brain a time to settle.

    That may not work for you, but it always works for me.

    I don't think your aunt has the right to make those demands, as she has done nothing to help you. I would be inclined to ignore her, and just do the best you can for your mum and yourself.

    Let us know how you get on.


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