1. zebra

    zebra Registered User

    Nov 20, 2007
    7
    Essex
    Hi, my mother is 84 and has got vascular dementia which is not quite the same as Alzheimers but the symptoms are similar. Can I first say, I learned more from this website in 10 minutes than from her GP, hospital doctors and social services in 3 years! SHe lives in a small flat 10 minutes away from my sister, who is round there 4-5 times a day, gets her meals, helps her get dressed and washed, takes her out to the hairdressers, does all her washing (She is not incontinent as such but has accidents). She spends Wednesdays with her own sister who is 86, but does not suffer from dementia at all, and Sundays with me. My sister is finding it tough as she is partially disabled herself and retired early through ill health.(I am still working full time). We had an assessment from social services to see what help was available, in the form of carers, helpers, maybe residential help later on. Mum is at the stage where she should not really be living alone, her GP has said on several occasions. She has fallen over and broke her wrist last week and is now in plaster. (I only learned from this web site that her wobbly gait is due to dementia and lack of spatial awareness, no-one told us that before). She can get dressed herself but sometimes does not want to bother getting out of bed. She cannot make herself food or a cup of tea any more and does not help herself to food from the fridge. However she can sound perfectly lucid and in her own mind is fit and able to look after herself as she has done for years and years. I am sure everyone is familiar with this. Anyway, anything the guy from social services suggested; carers, respite day care, meals on wheels, mum refused indignantly point blank and apparently you cannot force anyone to have anything or do anything they dont want to, even if they are not in their right mind. Her GP has said she needs extra help. So while the guy sympathised that my sister does need a break, we have hit a brick wall and he said nothing could be done unless she fell over and ended up in hospital, which is what we dont want to happen. Sorry to ramble on. Can anyone offer any insight/advice/knowledge? OR just a bit of empathy? Thanks.
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Hi Zebra and welcome to Talking Point, although sorry you have had to find us.

    Empathy you can have in spades. I shouldn't think that there are many people here who wouldn't read your post and nod understandingly. Not many ideas, I'm afraid, because if your mother won't accept outside help, you are stymied. I have one or two suggestions and questions though. If your mother is still at the early stages, have you tried appealing to her sense of empathy regarding your sister's situation? She may not have any (unfortunately empathy for others is often one of the first things that goes) but I was wondering if she would accept some "outside" help if it was presented as taking some load off your sister? And has your sister had a carer's assessment? AS you say, she doen't think there's anything wrong with her, so I suppose it's understandable that she would have any truck with social services suggestions. She probably doen't even realise how much you are all doing for her, sadly. One of the things you do learn with dementia in all its forms is the art of lieing (or creative thinking as I've seen it described elsewhere on the website today, although I can't give credit where it's rightly due, becasue I can't remember who posted it). For example - it's not "day care" it's a "luncheon club", they aren't carers they are home helps. Is your mother receiving attendance allowance? My mother was resistant to this until I pointed out how rarely it was that one could get tax free money from the government. With that additional money might it not be able to sub-contract some of these tasks, such as the laundry?

    I'm sure others will be along to offer ideas or a sympathetic ear.
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Zebra

    Welcome to TP, and thanks for telling us about your mum.

    We have lots of members caring for someone with vascular dementia, so you'll find lots of support.

    I'm afraid I can't offer any practical advice, it's quite right that as long as your mum refuses help, they can't set anything up. I hope someone will have some suggestions for you.

    In the meantime, lots of empathy and hugs from me.
     
  4. sue38

    sue38 Registered User

    Mar 6, 2007
    10,854
    Wigan, Lancs
    Hi Zebra,

    My Dad was diagnosed with mixed AD and vascular dementia almost 12 months ago. It has now been suggested that he has another type of dementia, but as you say, the effects are pretty much the same.

    Lots of empathy, and I can only echo what Jennifer has suggested. In some situations I would suggest being cruel to be kind by withdrawing some of the support (i.e. only going up twice a day) but I would hesitate if your Mum is vulnerable.

    Will she listen to her 'big sister' if she tells her that your sister needs a break? She may surprise you. My Dad is adamant that they can still have the big Christmas party they have had for the last 40 years which involves feeding and watering some 30 or so friends the Sunday before Christmas. When I suggested that it was getting too much for my Mum who is 77 he did appear to take that on board. My mum, on the other hand, was mightily offended.
     
  5. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    Hi Zebra

    Sorry to hear about your situation but we've all been there one way or another. I think you have the perfect opportunity to talk your mother round due to her broken wrist. This happened to my Mum and it left her even more dependent than usual for several weeks. Explain to her that sometimes someone of her age with that kind of injury is provided with extra help by the NHS to help them recover as quickly as possible and that she is very lucky to have been offered it. A complete lie I know but it might make her look on the help differently, especially if she thinks it is temporary. If she goes for it you can be creative with coming up with explanations as to why it contines a bit longer then a bit longer again.

    Good luck

    Liz x
     
  6. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    It's not uncommon for some people with dementia when faced with something new or vaguely threatening to immediately reject it out of hand (I have heard this type of behaviour described as 'negativism'). The 'trick' is to avoid situations where the person with dementia is required to make a snap decision, as the answer will usually be "NO!".

    I agree with others that you could try an appeal to her motherly instincts to support your sister by getting in some extra help. It is not unusual for someone with dementia to agree to a plan of action one day and then revert to their original opposition the next day - so this could be a long process.

    It might be a good idea to introduce a carer during one of your sister's regular visits, perhaps the one that involves making the midday meal as the care is less personal than getting someone dressed. It would be interesting to see if your mother could accept this new person alongside your sister over a period of a week or two.

    Take care,

    Sandy
     
  7. germain

    germain Registered User

    Jul 7, 2007
    342
    Hello,

    We had the same problem with our mother at first. We were very creative ! With your Mums broken wrist it should make creativity a little easier - you could say " the doctor ordered" etc

    We :
    --arranged the day care centre and transport - got her ready and went with her the first time - promoted it as a big social event
    With Xmas coming up there should be a lot going on !
    -- told her we'd arranged for a cleaner to come in
    -- told her that the "cleaner" was just like the home help she'd had years ago (50+) after a home birth.
    --Gradually increased the carers hours/duties as she got used to her

    Once our Mum got accustomed to the help she forgot that there'd been a time when she didn't have it. We also had little laughs about her being "very posh" and having a cleaner - Mum never really noticed that her so called cleaner didn't do much around the house (it was all personal care at the time)

    Good luck - there will be a way round it somehow - you just have to know which buttons to push to get your Mum to co-operate !
    And sorry - but sometimes , in the interests of safety - "tough love" can be called for and it will be much harder on you , doing the insisting, than your Mum , doing the protesting !
    Regards & all the best
    Germain
     
  8. 117katie

    117katie Guest

    Hi there!
    I have not a lot to add to the other posts really, but just wanted to endorse the suggestions. With my Aunt, who to this day says "there's nothing wrong with me; I don't need help", we never used the word day centre, but always called it her Club. Never talked of meals on wheels, just "a free lunch for old girls like you" - but make sure it's not pureed soft food unless that's appropriate - my Aunt still has all her own teeth, but only accepted the MOW once I got real food delivered, especially as it was "free to old girls like you". That never offended my Aunt, because that's the kind of talk we've always engaged in. And she accepted the Care Workers coming in eventually, again once we convinced her it was "free cleaning service to old girls like you"!!! But my Aunt still has a wicked sense of humour.

    Good luck - hope you get some help sorted.

    Katie
     
  9. zebra

    zebra Registered User

    Nov 20, 2007
    7
    Essex
    thanks

    thanks to everyone for your kind support and helpful suggestions. I feel very loved and cared for! Actually feeling a bit blubby! i am going to print everything out and send it to my sister, who is as resistant to the internet and mobile phones
    as our dear mum is to outside help! Mum has still got a wicked sense of humour and can come out with some very witty asides, and I can often crack her up with the use of silly accents, etc. so its not all doom and gloom. And we will take your suggestions on board, and be a bit "creative", although the officious guy from social services will prob come along and undo it all by standing there with a clipboard and saying something like "so I hear you've agreed to a carer, then".!
    Will let you know how it goes.
    xxx::)
     
  10. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Zebra,

    I meant to ask, if you do employ a carer, will it be through social services (SS)? If your mother has enough savings and you will be self-funding, you can approach a home care agency independently and make your own arrangements (this is what we have done).

    You can find home care agencies in your area via the Commission for Social Care Inspection (CSCI) website (use the find a care service link): http://www.csci.org.uk/

    We initally booked the home care through SS and were billed by them, but this made the arrangement very inflexible and in the end we found it easier to make the arrangements ourselves.

    If you do quality for SS assistance you might be able to arrange direct payments (something I know nothing about, but others have experience of)where the money is paid direct to your mum and you arrange the care.

    Also is your mother claiming Attendance Allowance http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10012425? It sounds like she would be more than eligible.

    Take care,

    Sandy
     
  11. zebra

    zebra Registered User

    Nov 20, 2007
    7
    Essex
    Hi Sandy

    Hi Sandy thanks for reply,but no we are not self funding, mum does not have any savings or even own her own property, and there is no way we could afford private care or nursing homes. But what i would like to know is, even if we could, wouldnt that still come under the same criteria that no help can be given unless the recipient agrees to it?
    To someone else's question, my mum is getting attendance allowance, which my sister uses, but i'm sure my sister should be getting some allowance herself as well, as she does all that laundry, uses plenty of petrol on her visits to and fro, buys those disposable incontinence knicker things, etc.
    Thanks again everyone, your insight and advice is truly invaluable.
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,894
    Kent
    I thought incontinence pads came on the NHS. :confused: Ask your sister to check.
     
  13. zebra

    zebra Registered User

    Nov 20, 2007
    7
    Essex
    Reply to last post

    Apparently the ones the NHS provide are kind of like big sanitary towels, Mum has knickers they are kind of like babies' disposable training pants all in one things, they are quite comfortable, so I guess as we choose to have them, we should pay for them. !
     
  14. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Zebra. I found the same. SS only provide pads here, and they're not easy for a person to manage unaided. I bought the pants too, and john could manage these.

    But some authorities do provide pull-up pants free. It's always worth asking.
     
  15. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi zebra,

    In general terms yes, but if you employed a carer directly (through an agency) you could introduce her in more 'creative' ways. For example initally as coming in with your sister for an hour a day just to see how your mother reacts to her.

    Your mother wouldn't have to explicitly agree initally. If things went well and you did want to increase the hours of course you might need to explore the situation again so that your mother could agree to paying the agency costs. We told my in-laws that the attendance allowance more or less equated to their six hours of care per week.

    In the end, we had the bills sent to us directly because they began to confuse my mother-in-law (it is my father-in-law who was diagnosed with dementia two years ago, but my mother-in-law is also getting a bit "fuzzy around the edges" on things like finances). We pay the agency and then settle up with my mother-in-law once a month (as we also do all their grocery shopping online).

    Take care,

    Sandy
     
  16. zebra

    zebra Registered User

    Nov 20, 2007
    7
    Essex
    Follow up ...

    Hi everyone, there have been developments in my mum's case so thought i would update you. My sister found out by chance she could get another assessment through the hospital and that assessment the nurse said that within 5 minutes of meeting Mum she realised she needed full time care. She said what the social worker had said was wrong, as Mum is not in a fit state of mind to make decisions about her care. She also let my sister know off the record, that that social worker had closed mum's case and washed his hands of the matter, but asked her to please keep quiet about that particular piece of info!! She set some other wheels in motion, and within 24 hours the SW had got in touch with my sis, desperately anxious to help, so he knows he did something wrong. He still has not been much help, he has not contacted the people he was supposed to and my sis has mostly done it all herself, but the upshot is, we have got mum into a lovely place, near to where we all live and easy to get to, overlooking the sea, with lovely people and she did not object and seems to have settled in. (Apart from the fact she has upset an old boy already). She moved in on Saturday and they said we should not visit for a couple of days or it would totally disorientate her, so my sis is going today and I am going tomorrow. She has got her own room and en suite bathroom and toilet. There is a doctor who visits, and of course we can take her out for meals, to my house on Sundays, to her big sister's, just like before. I feel like a huge cloud has been lifted, to know she is being cared for 24 hours and not going to wonder off and fall over again. When you call to ask how she is, they dont just say "she's fine" they give you a full report of what she has been eating, interacting with people, etc (vis a vis upsetting the charming old gentleman!)I downloaded the report done in April from the Commission for Social Care, and its about 30 pages long, and very positive.
    So that's our story, and it was only by good chance that my sis found out how to over-ride the SW - and if any SW's out there are reading this, I know you are not all inefficient and unhelpful!
    Thinking of you all and sending my love. xxxxxxxx
     
  17. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Zebra, what a lovely positive post!

    I'm so glad you've got your mum settled, the home sounds lovely. Hopefully things will be better for you all next year.
     
  18. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Congratulations Zebra! What a great outcome. Frankly I hope your SW gets a HUGE kick "you know where" for being so unprofessional. Do people like this understand how much powe they have over the lives of others? Do they deliberately misuse it to exert that power? Or are they just incompetent? Anyway, it is not good enough to have people of this calibre in SW roles. I'm delighted you have solved your own dilemma, but I worry about how this SW might act for others . . . . ?? Have you thought of lodging a formal complaint?
     
  19. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hmm, I have no particular affinity to our SW, can't even remember her name as her last and only contact was 4 months ago when we were looking for a home for mum, but I suppose they have their problems too, obviously those of us using this site are wanting to do our best for our rellies, but they are probably faced with people who haven't a clue what they want, don't care where there relly goes, or at the other extreme want gold tassles on the drawer handles (as there was in one home we visited). And the law, and local authority interpretation of the law, and funding, does keep changing, so perhaps he just wanted quite up to speed. As a person who works in Taxation, I know just how difficult it is to keep abreast of new developments. Not trying to absolve him if he said he would do things that he hasn't done, but perhaps he is struggling as well, and it might actually be his boss you should be directing your comments to.

    Anyway, so glad to hear you have found somewhere lovely for your mum, it sounds ideal for you and her.

    Best of luck, let us know how she goes on.

    Love

    Margaret
     
  20. zebra

    zebra Registered User

    Nov 20, 2007
    7
    Essex
    update

    Visited mum yesterday with my son and daughter in law and she looks better than i have seen her look for ages, she is walking better and not so shaky, she is happy and peaceful, her eyes look better and she has gained a bit of weight. The food is lovely and the routine of 3 meals a day at set times seems to agree with her. THe place is OK, it is a home for elderly people with dementia so there are the smells and sights you would expect, but the carers are so kind and she is obviously thriving so well, i am more concerned with that than with bone china tea cups and tassled curtains! She walked around the place with us, and came to the door to wave us off.
    Regarding the SW, now everything has turned out ok it would be easier just to write it off and think maybe he was having a bad day, but it was only by chance my sister found out about other channels and like someone commented above, his negligence affects peoples' lives, so my niece has written to the local MP and to social services.
    Happy New Year to all.
     

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