Who Cares for the Carers?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Jude, Aug 16, 2004.

  1. Jude

    Jude Registered User

    Dear All,

    Recent posts from both Magic and Norman have highlighted an enormous problem for us all. What happens when a Carer becomes temporarily too ill to care for their loved ones?

    Where do we go for help - FAST???? Are there any Care Agencies that provide emergency assistance? What response, if any, would we receive from the SS, CPN's, Age Concern, Crossroads, etc.

    Does anyone have past experience to share, or have any bright ideas for the future?

    Let's have a brainstorming forum here and see if we can come up with some constructive ideas!

    Best wishes,


    Jude
     
  2. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Jude
    I don't think there any such thing as care agencies for us.
    Would not the first call be on the GP?After all they are responsible for our health care.

    best wishes
    Norman
     
  3. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Norman everytime I go to the doc I'm told all my problems are caused by stress and it's time to ask myself if maybe mum should go into a home.
    I find all this very enlightening info and terribly helpful. NOT!!!!!!
    Hope you're feeling better by the way.
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Who cares about the carers???

    There have been many messages on the forum posted by carers who are either left to it by other members of their families, or by the state or by just about everyone.

    The role of carer is a very demanding one, and an incessant one.

    Only yesterday I learned that someone at Jan's home in the same position as I am - a younger person caring for an early onset partner - suffered a heart attack a couple of weeks ago.

    Because she was in hospital recovering from the heart attack, and unable to visit her husband, she received a nagging call from one of his relatives demanding to know when she was going to resume her visits. [that person doesn't visit, by the way]

    The doctor has told her not to visit at all, to save her health, but she has started on a one day per week basis, even though clearly very fragile.

    Some years ago I read a very good book by one of my favourite authors, James A Michener, called "Recessional". The story, fiction, takes place mostly in an old folks home in Florida, where there are a few Alzheimer's patients.

    One paragraph from the book stands out to me. A new doctor is being shown around and is being introduced to dementia patients for the first time. He asks:


    "How does it end?"


    The reply:


    "It's not uncommon for the healthy partner to die first, worn out by the strain of incessant caring for the stricken partner. It's as if the healthy person surrenders: I cannot bear this terrible burden any longer."


    Clearly this is not universally true, and for partner, 'carer' is probably a more correct term.

    It does the person with dementia no good at all if the carer comes off the rails en route.

    Now I know from my experience of caring that the carer is probably the very last person to accept that [and everyone else seems to count on it anyway!]. I have left heel and fingernail marks all over the place as I have had to be dragged away to give just a little distance, and time to myself.

    But I am able to give Jan more quality time now when I see her, and also to ensure that I have a life of my own outside.

    Moral: there comes a time when the carer needs some TLC themselves. [I'm assuming that particular TLA is a familiar one...]
     
  5. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Bruce
    I agree with all that you say,but it doesn't answer Judes question.
    I still feel that the GP must be the first ,call it may need kicking up a fuss,but where else could we go.?
    The consultant? They would help by commiting the patient,perhaps.
    The CPN I imagine she would contact the GP?

    Norman
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Norman

    I wasn't attempting to answer Jude's question as you had already done that - the GP is the first port of call.

    I posted my message because it was broadly on the topic, and was stimulated by my visit to Jan's home yesterday.

    Clearly a carer may initially be temporarily ill, but their condition may quickly become longer term.

    My message was intended to show what can happen if a carer cannot call on help in all sorts of situations.

    The problem with a GP as a first port of call is that a 7 minute consultation may be the norm, and unless one calls in the Four Horsemen of the Apocalypse to help, the urgent nature of the problem may not be appreciated.

    Often I was offered sleeping pills, anti-depressants, because it is easier to write a prescription than to dig to find the root of the problem. Often it is our fault because we may minimise the problem. That is why it is essential to be up-front about emergencies.

    I have wondered whether sucking some soap before a consultation may help - frothing at the mouth soon gets action. ;)
     
  7. Chesca

    Chesca Guest

    Nada

    Have just copied your post over to Magic who appears to be having a find old struggle. Hope you don't mind my plagiarism!

    Chesca
     
  8. Chesca

    Chesca Guest

    Bruce

    Frothing at the mouth certainly worked for me to some extent, Bruce.

    First: Mum had a CPN, who appeared every few months when she felt like it, and social worker support. We had moved to our present home very quickly to be closer to help, but I had had to handle most of the move and its endless administration because of JJ's work.

    Second: Mum was deteriorating rapidly and stress levels for Dad had reached implode - e.g. every afternoon at three o'clock he was tearing up and down some seven miles to take her to her 'home' to see her mother, where her brother still lives, on arrival at which she would say: I'm not going in there. It was like the Wacky Races; 'Catch the pigeon' became our theme song. Dad is 82 with severely limited mobility and breathing difficulties, but even so was hostile to the support staff who were appointed for a few hours every afternoon, to the point of blatant hostility. He just wouldn't play ball.

    Third: I imploded one afternoon when the promised help did not appear and unable to contact any of the above contacted the assessment unit who had started the whole process, even though it was nothing to do with them - it was the CPN's. I can only describe it as an out-of-body experience - I could hear myself but could not believe that I was so hysterical. All civilising influences had disappeared. Fortunately, Rose at the end of the phone, who had some knowledge of Mum, took it off me - in between my apologies for bothering her, she kept telling me that it was OK, she could hear it in my voice. She called me back within the promised 10 minutes with POSITIVE info to get me back on track.

    I visited the GP next day to say that I wasn't sure I could continue with things as they were. She did listen sympathetically, given the state I was in (a quivering, snivelling, wretched, out-of-control mess) she'd have been criminal not to and when I explained that I had felt like ripping a potato peeler across my throat as a balm to the intense pressure of frustration and anger she prescribed tranquillisers for ONE WEEK ONLY and which JJ was to administer to me. She told JJ that if ever I reached such a state again, he was to take me straight to A&E! But, as he quite rightly pointed out, surely things should not have to reach such a stage when we were supposed to have all this support! That shook her! As a short term solution the tranquillisers worked quite a bit.

    She insisted that I explain all that I had told her to the CPN with whom I had an appointment and the CPN did then start some pretty fast sorting. (Following events have been fraught with their own sadnesses and frustrations, for better or worse? only time will tell.) But in that time some pressures WERE taken away, and people started listening.

    You are so right - if people think you're coping, they'll leave you to it. But coping is not living, its a prison and one of our own making because of love, loyalty an awareness of our loved one's dependency on our strength, we don't want to let them down.

    I'd say hit on the GP first but tell it like it is, not the way one thinks they would like to hear it. They should at least be able to point you in the direction of all the agencies.

    Gawd, I've done it again. On and on like a worn out pair of shoes.

    Lotsa
    Chesca
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
  10. Chesca

    Chesca Guest

    Hey, Jude... (sorry, but I hail from a future European Capital uh Culcha and need to practice)

    As we are all using the internet as a life line, and its a very valuable tool in our survival kit, why don't we (i.e. anybody else but me - I couldn't sell a large gin to George Best) approach the net providers for a contribution or some sort of sponsorship to a fund with the aim of providing some care for carers......

    Still working on it.............................keep having these brainstorms in between jobs. Am supposed to be changing sheets, only done two when this occurred....better get back, only another seven pillow cases to go.....

    Chesca
     
  11. Jude

    Jude Registered User

    Dear All,

    Good to read all the views here.

    I was rather thinking along the lines of some sort of Emergency Carer Relief service. People who could be relied upon to turn up and take over until the sick carer was well again. I know that a lot of Agencies say that they can do this, but generally their staff are fully booked and they need quite a bit of notice beforehand. Unfortunately illness strikes immediately.

    Chesca's point about funding is a good one. An ideal situation would be to have a source of funding and available people to start up a 'Flying Carer' service.

    Jude
     
  12. Chesca

    Chesca Guest

    Dear Jude

    Are you thinking along the lines of a bank of experienced voluntary carers, across the regions drawn from those whose relative is now in permanent nursing home care, and who would be prepared to help out at short notice? Agency staff are expensive and in my experience many are ill-suited, too young to even begin to understand, unreliable, etc., but that's by the by, I'm preaching to the converted

    Chesca
     
  13. Jude

    Jude Registered User

    Dear Chesca,

    Couldn't have put it better myself! That's exactly what I mean.

    I started thinking about this due to Magic's predicament and thinking 'wouldn't it be great if I could just fly off and help her out for a week'. Obviously I can't do any such thing at the moment, but if and when the oldies require a Nursing Home, then I WOULD be free and available to do so.

    Funding? Hmm, another problem but where there's a will there's way.......

    Jude
     
  14. Chesca

    Chesca Guest

    Dear Jude

    Haven't forgetten this thread. My home is a slum..........Spent good part of yesterday talking to someone who used to be ChairMAN of a local youth charitable trust. One of the things pointed out was that as soon as you start these things, however well-intentioned, there is a minefield of regulations to negotiate in this PC age. I did explain the nature of the thing was to have a sort of 'magic friends', a fellowship of the empathetic if you like. Anyway, this site has legal advisors who could point us in the right direction.

    Would it be possible, always supposing funding could be accessed, to separate the two, thus circumnavigating the PC **** of today? is one of the questions I would like to pose?.

    This will be quite some undertaking and dependent on the will of others to commit, we know. But how many times have many of us thought: please can I have some time, even 24 hours, when I can walk away and reclaim some part of myself.

    Really, must empty the washing machine......

    Much love
    Chesca
     
  15. Jude

    Jude Registered User

    Dear Chesca,

    Therein lies the problem with all good ideas today. Somebody is always going to start blatting on about legal positions, qualifications, public liability insurance, ad nauseum.

    I'll have a chat with a few professionals next week and see why the consensus of opinion is from their point of view.

    Jude
     
  16. Jude

    Jude Registered User

    Dear All,

    I've just received some information regarding a Carer's Support Agency called Admiral Nursing. Has anyone heard of this group before? I gather it's quite a new organisation. I've asked them to send a leaflet.

    Jude
     
  17. Chesca

    Chesca Guest

    Dear Jude

    Re yours: Admiral Nursing, found this blurb on the net:

    "Organisation: For Dementia (Formerly Admiral Nurse Service) _

    The For Dementia Admiral Nurse service supports carers of people with a dementing illness. The service is usually based within the NHS and is free to users. Admiral Nurses are qualified and experienced Registered Mental Nurses who have specialised in the field of dementia care. They provide advice and information about all aspects of dementia, availability and access to local services, management of behaviour, etc and are able to support carers through the transition of the person with dementia to residential or nursing home care and after death. This service is currently available in some parts of London, Kent and the North West.

    For Dementia Training specialises in the provision of high quality training for those who work with older people and people with dementia. For Dementia Training provides a broad range of open courses commissioned by organisations and held at their own venues.

    020-7874-7210
    www.fordementia.org.uk_

    How to Contact: Via Social Services, Health Authority etc (Ha! that's my cynical HA! sorry)"
    ['For Dementia' (Formerly Admiral Nurse Service)



    I don't know about you, but I'm having a struggle trying to explain to people what this idea is about: INSTANT emergency support in the home or whereever you like, for whomsoever is caught up in an emergency situation, without the funds or physical recourse to any of the support services. I SODDING WELL KNOW there are carer support services - bookable in advance and probably payable and mostly aimed at taking you away to Pontins or somewhere similar out of season (why do they do that? we are still part of the human race, for God's sake, how sodding patronising), however well-intentioned - there are blah de bloody blah organisations, they will tell you.

    WE OR AT LEAST SOME OF US, ARE TALKING ABOUT THE 'KNOCKING NEXT DOOR, LEND'S A CUP OF SUGAR 'TIL THE END OF THE WEEK' KIND OF SUPPORT AND WHEN YOU DON'T HAVE THE SUGAR AT THE END OF WEEK YOU REPLACE IT WITH A PINT OF MILK, KIND OF SUPPORT.
    Call me an ald hippy, but it strikes me there's not a lot wrong with a bitta barta!

    Must have dinner - we're having Dad - fried or boiled with lots of garlic and wine.

    Speak to you later.

    Chesca
     
  18. Jude

    Jude Registered User

    Dear Chesca,

    Well, since I'm an old hippy from way back, I totally agree with the barter system. In fact, my best mate in Oz has just joined a new organisation over in Cairns, called LETS. They do exactly that - barter services without money. It's working a treat. Juliana is currently bashing around in the highlands of Thailand at the moment. Will get some details when she gets back to Oz.

    Jude
     

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