Help with care in the community - a daughter in despair!

Discussion in 'I care for a person with dementia' started by Jules44, Apr 14, 2015.

  1. Jules44

    Jules44 Registered User

    Apr 14, 2015
    4
    Hi all,
    I was wondering if I could find an lifeline on here or any feedback about similar stories to stop feeling so isolated and distressed!

    My story started 2 years ago when I became the primary carer for my mother at the age of 28 yrs old, who was diagnosed with frontal temporal lobe dementia at the age of 67 years old. Since then she has been sectioned twice totalling approximately 6 months over the last 2 years but remains "cared" for in the community under the local old age community psychiatric team.

    She has been unable to drive, cook, wash herself or her clothes/sheets and gets confused about her medications even though she has a dosett box. The house she lives in is in a horrid mess. Not to mention the increasing deterioration in the unpredictable nature of her behaviour and aggressive/agitated outbursts. All our local taxi companies refuse to take her as she assaulted numerous drivers.

    Her three times per day package of care was cancelled by social services as she wouldn't let agency carers into the house. Furthermore, given their lack of knowledge about dementia, especially the sub type my mother has, they actually aggregated my mother's difficult behaviour. She has had best interest meetings after best interests meetings where no action points or improvements to her care are ever made, we go round in circles and social services use the same excuse over and over again "she refuses help, we can't force her" even though she has been deemed to have fluctuating capacity, and certainly from the evidence I have collated over the last 2 years, as her only NOK, I feel she does not have capacity to live independently.

    She is getting worse and I am horrified to see what an awful quality of life she has, yet I am torn by what seems to be an ongoing excuse by social services that she just has to "be left, as she refuses all help". This is a symptom of her dementia - she doesn't think anything is wrong with her as she lacks insight due to her dementia.
    She has simply been put of risperidone and left.

    Is this the way it should be? Is this the way we care for all our dementia patients in the community? Does the fact that my mother has no assets or savings play a part in how she is being managed I.e. she could never self fund for her care. I have been asked this question time after time by social services at best interest meetings and always wondered the significance?

    I am absolutely heartbroken over loosing my mother to such an evil disease but then to have obstacle after obstacle in your way when trying to ensure their best interests are upheld and that they have the best quality of life, is soul destroying.
     
  2. Jessbow

    Jessbow Registered User

    I think you are stuck between a rock and a hard place. its very difficult for SS to do anything if your mother wont actually let them into the house.
     
  3. submarine

    submarine Registered User

    Apr 5, 2013
    25
    London
    It all sounds horribly familiar.
    Things got better for me only when my mother chipped a vertebra in her spine which got picked up mercifully by a senior radiographer at the A and E clinic.
    Finally I got some one to listen to me.
    Have you contacted Age UK. They may be able to talk you through some options and give you actual help Instead of fobbing you off .
    I too have wondered whether the souls that are not self funding are left to struggle in isolation. It puts such needless strain on the carer. The 'powers that be ' keep talking about the unsung heroes that are the carers ....a little help and real support would go a lot further than platitudes.
    I really hope someone comes along to give you some advice but I did want you to let you know that you are not alone.
    TP has been a godsend for me...hope it works for you too.

    Submarine


    Sent from my iPad using Talking Point
     
  4. Angela T

    Angela T Registered User

    Jul 13, 2014
    187
    France
    #4 Angela T, Apr 14, 2015
    Last edited: Apr 14, 2015
    Yes it is soul destroying and NO, it should not be like this !

    There does seem to be a stigma attached to dementia. Add that to the prohibitive cost of caring for dementia patients - and you have a recipe for neglect and indifference in the community.

    It is shocking...

    Sadly, the fact that that your mother has no assets probably does play a part in how she is being managed by social services.

    We were self funding, so when I felt my mother was no longer safe in her own home, we chose a CH and persuaded her to go for a few days... I hadn't realised how difficult it is, if you are not self funding. It is not right, your mother is at risk.

    Hopefully you will get some practical advice here, on the way ahead,
    Angela
     
  5. Jellybean8

    Jellybean8 Registered User

    Jan 12, 2015
    11
    Glasgow
    I feel so sorry for you. I think "Care in the Community" is frankly a hopeless name for a largely dysfunctional service. I totally agree there is a large vacuum of knowledge amongst so called professionals about how to manage dementia despite its rapid increase in society. My mum has diagnosed vascular dementia and my dad is going that way too but the GP doesnt think there is any point having him assessed. They are both totally struggling but trying to remain independent and are reluctant to accept help. The answer we get from SW is "we will just need to wait until there is a crisis before we can do anything". I feel that my sister and I are totally sidelined by SW and the GP instead of trying to work with us for the best outcome for my parents. The immense apathy of thinking it is ok to just let demented people struggle on is just appalling. I am beginning to rant so will stop now but you are not alone..!
     
  6. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I find all the system sucks big time when it comes to dementia - everything is based on money, money, money. Nothing about care and quality of life - the care of people with dementia in the UK is awful, the only thing you have to look forward to is fighting SS for help
     
  7. BizzyLizzy

    BizzyLizzy Registered User

    Apr 13, 2015
    10
    Hitchin, Hertfordshire
    My heart really goes out to you and like the other respondents I too question where the 'care' in Care in the Community actually is! Both my parents have dementia (mum with vascular and dad with Lewy Bodies). It took us 6 months to get a referral to social services who implemented a 'care' package which created such stress for us that we had to abandon it after just six weeks. We have now employed a carer directly to come in in the mornings and my sister and I share the remaining care between us. I can't believe that social services are fobbing you off like this. Have they not suggested that they fit a key safe at your mums house so that carers can access the house with a key? Your SW should be organising some sort of liaison between the mental health team and the care agency so that they can send in correctly trained people to care for your mum. The other person who should be helping you with this is your mums GP. I'm afraid that my sister and I have got so sick of being treated like an inconvenience that we now go in and deliberately thump tables and demand to be listened. Basically you have to be a pain in the backside before you are heard!
     
  8. ppjm

    ppjm Registered User

    Oct 11, 2012
    10
    York
    I can try and help :)

    Hi Jules44

    My lovely Mum Jane was diagnosed with bvFTD 3 years ago. She is now 65 years old (62 when diagnosed).

    I have been through the mill and back with the professionals and only recently has she been given a CPN who quite frankly has been like an angel.

    Unfortunately Mum had to be sectioned on Sunday and our hearts are broken but I would be more than happy to chat with you and help as much as I can!

    I know that I needed support so I know how important it is to give it back. PM me.

    Jo
    xx
     
  9. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,309
    Female
    England
    The LA will only come on board when it is deemed your Mother has no capacity to make her own decisions and accepting no help cannot be ignored. Yes money is tight but I think the question as to whether she would be self funding was asked because if you can self fund then where you live is your decision and as such if you choose to live in a care home then you can.

    I am really sorry you are going through so much and have to stand by and watch, it must be extremely upsetting when there is care there but your Mum is not accepting of it.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    9,663
    Female
    South coast
    To me the biggest problem is this "lack of capacity". The idea of capacity and being free to make "unwise decisions" is enshrined in the capacity act, as is the idea of people being encouraged to continue making decisions as far as they are able. I can understand why this is there and I would not want it removed, but I do feel it is being abused when being applied to people with dementia by professionals who do not fully understand the condition. The cynic in me also feels that it is a convenient hook to hang restricting services when they refuse help (as most people with dementia do) in order to save money.
     
  11. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    Have to agree canary. I don't believe that the architects of the Mental Capacity Act had any idea other than to protect the rights of individuals with any kind of mental difficulties. There is nothing wrong with the principles but the law of unforeseen consequences has surely affected its implementation. Perhaps part of the problem us that people are judged to have capacity too readily when everything happening clearly indicates otherwise?
     

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