Quick route to (re)assessment / respite care ???

Discussion in 'ARCHIVE FORUM: Support discussions' started by Suzy R, Jul 4, 2004.

  1. Suzy R

    Suzy R Registered User

    Jul 4, 2004
    #1 Suzy R, Jul 4, 2004
    Last edited: Jul 4, 2004
    Hi !

    Had a call for help from my aged (85) father in the UK this morning.

    My mother was diagnosed with dementia ("probably Alzheimer's") around four years ago when in hospital for a colostomy. She's now 82 and he is having severe problems coping with all the usual issues and recently particularly the obvious hygiene problems. Too proud to accept help from outside he has little or no contact with Social Services although a friend comes in to help out a couple of times a week and is able to achieve more with my mother than we ever could.

    This morning (Sunday) my father phoned and said that he can no longer cope and thinks that she needs to go into care. Up until now he's always said that he would not allow this while he was still around, but she's running him into the ground.

    Due to the distances involved I only see my parents every six weeks or so and two weeks ago Dad was already showing signs of depression and saying that he's sure she will outlive him, whereas previously he's been very pragmatic.

    Okay, so here's my question ...
    Is there an accepted route to getting my mother into respite care to give my father a break ? Would it be better just to accept that she now needs long term care ? Apart from the dementia and the colostomy she is actually physically very fit, whereas he is very frail.

    Thanks for taking time to read this post !!!
  2. Geraldine

    Geraldine Registered User

    Oct 17, 2003

    not an expert in this, but I think you could get in touch with your Dad's Gp and see if they can help push for emergency respite due to your Dad's failing health/inability to cope and this might gove you a bit of thinking time. You have to be firm, as another thread mentioned dig your heals in and say the family is not coping any more. Also get in touch with Social Services, has your Dad had a carer's assessment done? If not it might be useful for you to be present so you can make sure that circumstances are honestly reported. A psychiarist who helped me and Mum as she was going into care said that she often had to do more work with carers and families who were worn out and ill with the burden of 24 hour care than the patients themselves.

    regards Geraldine
  3. Charlie

    Charlie Registered User

    Apr 1, 2003
    Hi Suzy,

    If possible I would also getting your father to speak to his GP. If you can also speak to his GP/Surgery that will help. You may also be able to get some pointers from the local alzheimers branch at least to find out the first port of call. The local branch are more likely to know the best options or at least guide you in the right direction.....


    take care
  4. Jude

    Jude Registered User

    Dear Suzy,

    I recently spoke to our CPA here and she mentioned to me that a system has newly been implemeted whereby carers themselves can obtain vouchers for respite. So far I haven't received the details, but they are apparently on the way. As I understand it, a carer would come in and look after your mother whilst your father had a holiday. Perhaps you could take this up with your local CPA, but once I've got further information then I'll let you Know.

  5. Suzy R

    Suzy R Registered User

    Jul 4, 2004
    Thanks for the info Jude.

    Silly question maybe, what is a CPA ??? I've been out the UK for such a long time (20 years) I have no idea how the NHS and Social Services have reorganised themselves.

    My father spoke to his GP and she wasn't very helpful, just suggested we try to contact Mum's consultant to get an idea of what she needs, but as she refuses to go into care someone coming in may be the only option. If I take over myself, he refuses to go away (he was planning at least to visit me!) so we gain very little from the situation.
  6. Jude

    Jude Registered User

    Dear Suzy,

    Welcome to the expatriate's department, which now seems to have increased by 100% since your post yesterday!

    I too, have lived out of England [in Oz and Indonesia] for the past 30 years and am also having great difficulty wading through the miles of red tape and confusing acronyms here! My parents both have AD and I've spent the past 5 years ping ponging backwards and forwards across the globe to try and look after them as well as my husband and hotel in Bali. I seem be spending more and more of my time in England every year and less at home. I've only been home in Bali for 4 months within the last 18 months and feel like I'm burning the candle both ends ......
    It's a HUGE task caring for family when you are resident here and in another city from your parents , but when you are attempting to run back and forth from overseas, the whole situation becomes a total nightmare sometimes.

    A CPA is a person that handles the Care Programme Approach Care Plan [just don't ask me why it isn't a CPACP ....!] These people work with Consultant Psychiatrists and Hospitals and undertake community visits to help identify special needs within family groups. They drop in every 4 months or so and make sure that all's well and help out with problems, such as respite care, funding, info about in house care services/carers, right down to hand rails and bath seats etc. They also hold meetings which you can attend to plan ongoing care. Our CPA is extremely good and has been of tremendous help to me.

    So - you probably need to ring the Consultant and find out who your local CPA is and make an appointment to see her/him when you are next in England.

    It also sounds like you are going to need a carer to come in and help your father cope on a daily basis, so that he can get some daily space. Also, if he's going to go off for a few days' respite, then he will really need to know that your mother is being very well looked after otherwise he will fret the whole time that he is away and won't relax at all. This will also help you to feel relaxed when you're o/seas and not worrying about what on earth is going on in your absence and you can probably arrange to keep in touch by daily emails.

    Hope this might help a bit.

    I don't know if there are any other expats trying to care for parents in the UK, but perhaps we might need to establish a special posting service here on this web if that would be acceptable, as we do have some extra problems to deal with.

    Best wishes, Jude
  7. Suzy R

    Suzy R Registered User

    Jul 4, 2004
    Dear Jude

    Thanks. Felt really sure that I had already posted my reply on Thursday, but must have forgotten to press 'submit'.

    I think I may have actually spent more time in Indonesia than you in the last 18 months !

    Ex-Pats may well have some special problems. I get to the UK every six to eight weeks to visit Mum and Dad, arriving Friday and leaving Sunday or Monday, so I never really have time to speak to GPs or specialists. I did try once or twice to time visits to meet my mother's specialist, but on two occasions the appointment was re-scheduled at the last minute. My employers are reasonably flexible but there is a limit.

    Did you ever consider taking your parents to Indonesia ? I think if my father were left alone we might try bringing him over here, but my mother's surgical problems make the compulsory medical insurance prohibitive. We did bring her once about 18 months ago but even then she became very disoriented and seemed not to recognise us which seems to be less of a problem when I go to them.

    If the weather in the UK is as bad as Switzerland at the moment (snow last Thursday !) then you must be missing home very much !

    Take care,
  8. Jude

    Jude Registered User

    Dear Suzy,

    I've investigated taking my parent to Australia - the Oz Govt don't want them cos they've got AD, although they are totally self sufficient economically. I've had an Oz passport for 20 years and they still don't want to know about it. I mena, it's not as if they are going to be a burden on social welfare at all, or living there for a particularly long time - they are both 86 after all.

    I've also thought of taking them to Bali, but the medical services are so dreadful that it would be just too risky - too say nothing of the costs of buying KITAS visas and dragging them down to Immigration every 5 minutes. Apart from that, the climate would be fine and they'd love it. Also I have seven staff who would absolutely dote on them!! If you've lived in Indonesia, then you will appreciate just how much they love oldies and babies....

    Anyway, it seems I'm going to be stuck ping ponging my way around the world for the foreseeable future. It's expensive and a mega headache for me. Oh well, that's life I guess, because there is no way in the world that I'm going to dump them off in a nursing home somewhere.

    I did investigate nursing homes last year but the callous answer was that they would take one but not both of them and would split them up. - and also they would have to be locked up in EMI. My parents have been together for 63 years and for some reason, most homes seemed to feel that it was quite okay to separate them. The general consensus was 'oh well, they're past their use-by date, so what'....

    Anyway I've rented a bungalow for us and we are all doing really well - in fact my parents are in better health and spirits than ever. It's a bit of a drag for me, BUT I don't think I could live with myself if I put them in a nursing home at this stage. I expect I may have to do so later on if they both get really past it, but I'm happy to handle things until the last minute really.

    In the meantime, I've got a couple who are great carers and really help me out. I'm also trying to do a lot of small trips around the place with the oldies and taking them on lots of walks which they really enjoy. Just hoping that the weather gets a bit better so that we can sit in the summer house and do a bit of gardening.

    Where have you been staying in Bali? Would love to hear your news.

    Best wishes, Jude

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