Is there training to cope with it all?!

Discussion in 'ARCHIVE FORUM: Support discussions' started by Pati, Dec 10, 2004.

  1. Pati

    Pati Registered User

    Dec 10, 2004
    1
    Hello everyone - I'm new to the talking point too. Mum's got mid-stage AD, early 70s, lives alone with daily carer visits, lunch delivered & family visits two or three times a week (we dont live close by) Her deterioration & challenging behaviour now make visiting distressing for all to the point where we almost can't do it anymore & it takes days to recover. We've read the books, done our research, spoken to GPs, CPNs, social workers, & the helpful Alz. Soc people - apart from SPECAL in Oxfordshire, is anyone aware of any training one can do - or is this, as we suspect, how it is? As you can see, we're struggling as we all are - Also, planning ahead, would appreciate all the pointers you can give about the most important things to look for and question when looking into residential care homes & how do you know when you've reached that point? Thanks so much - good luck to everyone this Christmas-time.
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Pati, so sorry to hear how difficult things are for you concerning your Mum. Whilst there is no magical cure all training course, we do have a valuable collection of fact sheets. Have a look at these, they're free! Not much else is, unless the laws change concerning care of people with dementia. The other thing is us, as a group, we have a vast knowledge at your disposal. Each person's journey through this disease is different, but there is a lot of common ground. Ask us, we will try to help, you can find one problem but several ways of dealing with it tried here. Just go for what suits you and your family. We will always do our best to be honest about how it is, there's no point in rose tinted glasses 'cause they don't help. Please ask away, sounds as if you are getting to the stage when 24/7 of one kind or another is needed for safety, this could be at home, in a home, or in a relative's home. It depends on resources available in your area and of course finances do rear their ugly head.Tell us what you would wish to do and we can try to help you bash it out. Whatever you decide as a family, there are hard times and tears ahead but there will be good times too, times when love and laughter shine through. We will be here for you whenever you need an ear that is unconditional and on your side. Love She. XX
     
  3. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Skills for Caring Course

    Dear Pati,
    I find that information, advice and support are absolutely vital when you are confronted with the task of caring for someone.
    My daughter and I attended an excellent "Skills for Caring Course" a couple of years ago, which was run by the Aylesbury and Buckingham Districts Branch of the Alzheimer's Society. It was a 6 x 2-hour training programme, which covered the following subjects:
    Dementia - what does this mean?
    Alzheimer's and other Dementias
    What is happening to the Brain?
    Symptoms - How do we deal with these?
    Communication with the person with Dementia - maintaining skills
    Coping with changing behaviours
    Benefits, mental capacity and legal issues
    Services available through SS, JHU, etc.
    Finding the right residential/nursing home - and finance
    Looking after yourself - physically and mentally.

    Apart from all the valuable information we received, we found a great deal of support within the group of carers who attended the course with us, which helped us feel more comfortable with the scary subject of Alzheimer's and Dementia.

    It may be worth contacting your local branch to find out whether such a course is available in your area.

    All the best, Carmen
     
  4. Chris

    Chris Registered User

    May 20, 2003
    243
    Ask even if you kow its not available

    Hello all

    Just like to say 'ditto' to Carmens post . The local branch of Alzheimer's Society in North Somerset run similar sessions - called 'Carers Information sessions' . Out of the first series that ran came an ongoing Carers Support Group as such a bond was formed between the carers that they wanted to continue meeting and have opportunities for more frequent access to branch staff. Now these are run in two centres that cover the whole of the county/branch.

    More and more local branches of Alzheimer's Society are running these now. Its important that all branches know how much these can help carers & that there are carers who would use these if set up. Also if there isnt a branch of the Alzheimer's Society in your area - maybe some other voluntary organisaton (eg Crossroads or antoher Carers org. ) can run these.

    It is the responsibility of local authority (Social Services ) to offer education for carers so if they are not funding voluntary sector to do it - maybe they are running themselves - or shoul dbe ! - probably hte Community Mental health Team.

    Keep raising Awareness - thanks !
     
  5. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Dear Pati
    I haven't come across any formal training in our area, but the support groups run by the local AS are a godsend to anyone new to caring for AD sufferers.

    If you cannot find a training programme in your area I would advise joining your local AS support group.

    The next best thing is TP, the wonderful people on this site are a fount of knowledge and support no matter what the problem.

    Apart from that I'm afraid it is a steep learning curve in the school of hard knocks.

    Cheers Barraf
     
  6. Chesca

    Chesca Guest

    Didn't the Alzheimer's Society produce a training video quite some time ago. I think it was for the use of care homes, not sure, but I would be interested to know. It may be very useful. Can anybody help?

    Chesca
     
  7. Chris

    Chris Registered User

    May 20, 2003
    243
    TRAINING VIDEOS

    Yes Chesca - the Alzheimer's Society do produce training materials for professional care staff & these can be of use to all carers of course.

    I particularly like a video presented and directed by Viviana Fain-Binda, and based on her experience with her mother, the video offers a moving insight into the care of someone with Alzheimer’s. Thsi came out thsi year - but there were limited stocks as it was made with a grant & I guess only so many could be made. Given the ease with which copies of videos can be made (and onto DVD too) I do hope either Viviana or the Society can extend the life of this video AND get it seen far and wide - it really is EXCELLENT. I will post separatrely to see if anyone else has seen it - if there is no hope of getting more copies of this we will HAVE to send it around - it is that good.

    This extract is from the main Alzheimer's Society website :

    New video for carers of people with Alzheimer’s disease - " Life with two hats"

    20 October 2004

    Launched on 2004, World Alzheimer’s Day, this short 22-minute video provides new carers with practical ideas and encouragement for the task that lies ahead. Most important, it invites the carer to seek help from local services and facilities. Maintaining the carer’s own well-being is a key message, as is stressing the importance of asking for help without feeling guilty.

    Presented and directed by Viviana Fain-Binda, and based on her experience with her mother, the video offers a moving insight into the care of someone with Alzheimer’s.

    When you look after somebody with dementia, you wear two hats: the ‘Florence Nightingale cap of compassion’, looking after the person’s physical and mental needs, and the ‘warrior helmet’, battling your way to find out what services and benefits are available.

    Agony aunt Claire Rayner believes:

    Even people who feel they know all there is to know about Alzheimer’s disease will find this video useful. Those who are facing it for the first time, either as a patient or a carer, will find this video useful as well as moving beyond measure.

    I hope as many people see it as possible – including children who may have a relative with this most debilitating and cruel of conditions.

    How to view Life with Two Hats video (VHS casstte tape)

    Option 1
    Call your local Alzheimer’s Society branch and request to loan the video.
    Your local branch

    Option 2
    Send postage stamps to the value of £1.65 (to cover post and packing) with your full name and address to:

    ‘Life with Two Hats’ Video
    Alzheimer’s Society
    Gordon House
    10 Greencoat Place
    LONDON
    SW1P 1PH

    Availability subject to stock levels.
     
  8. Chesca

    Chesca Guest

    Dear Chris

    Thank you for your reply. I don't personally need training in how to deal from somebody else's perspective. I want a really honest illustration, blood and guts, if you like, of a training video. I really don't want: Pan into lights please and let me get your best side, covered in cheese cloth kind of video. I'm talking about a real illlustration of how to care for somebody with Dementia, which is what I understand was the aim of the training video provided by the AS. Not for me, I discovered this site far too late in any case. I believe one of the aims of the AS was to provide suitable training for people at the 'coal face' - the paid carers in nursing homes - the aim was to make understood the issues of caring for sombody with AS within a professional environment. It would be interesting to know what the response was.

    I am constantly amazed by the lack of awareness of the so- called 'professional carers' of AD sufferers viz:my personal and professional qualifications are sufficient for any agency to employ me, regardless of my lack of nursing professional experiences. But I wouldn't be able to deal with it ( except for Mum) - even for the grand sum of about £4.50 per hour, all the food I could eat and all the jewellery I could steal - speaking from personal experience, of course, always. But an agency would still employ me. That's scary.

    That's the training video I would like to see.

    Chesca
     
  9. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Have to agree there Ches, I had proffessional training, but the only course I got on to once I was "just" a carer of a relative was an Alz soc. one designed for proffessionals that I pleaded to be allowed on. Unfortunately it was ground already covered, but would have probably been useful to anyone not having contact with the illness before. I think that what we have here between us takes some beating really. Love She. XX
     
  10. Chris

    Chris Registered User

    May 20, 2003
    243
    Hello Sheila

    Just wondered what the 'professional training ' you mentioned was?

    I found it was useful to see, read, take part in everythng that was going - it all shaped my thinking - and continues to do so. I dont thnk there is one traniing scheme that provides everything - not surprising when you think about the long course of the illness and how differently it affects people.

    Mostly I reckon its best to go with what feels right. Info on practical caring skills is useful and how to look after yourself - spotting warning signs of stress & learnng some techniques for coping with stress may be helpful. Access to local information is realy crucial - knowing that services are there even if you dont use them (things like Relief Carers, Counsellors, who to call if you fall ill yourself) - these all act as safety nets and give a certain amount of peace of mind. I tried to be a safety net for my Dad - if he needed to leave Mum - he knew I could take his place & look after her.

    Have you been able to see the video "Life with Two Hats" ? Interested to know what you think.
     
  11. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Chris, I worked in the EMI sector of nursing for over a decade, during which time I attended many training sessions on nursing care of dementia patients, I also did several years of occupational therapy with dementia sufferers. But as I said, it's totally different in the nursing world compared with how you feel when you are coping with a partner, or a Mum, Dad or other close family member or friend. You are given guidelines, suggestions and ways to cope, but on a professional level. At the end of a shift you can walk away, family carer's can't. When my Mum got dementia, nothing was available to the family carer apart from the local group meetings really. Sounds from what you say that things are improving, I do hope so because it is well overdue. You could get books to read but basically you spoke to others you met at the group, in the same position and formed a small network to help each other through difficult times much as we do here. That's why I think TP is so wonderful. This is what I was trying to explain, as carers of family, you can't ever really just walk away completely, can you? You may find a lot of what you are looking for in our fact sheets, we also try to get TP'ers to check out their local areas for what is available much as you have done yourself. As yet I have not seen the video you mention, my Mum passed away in July and there has been much to do since then sorting her affairs etc. I will try to check it out when I get over things a bit it's all still pretty raw at times if you know what I mean.Hope that explains what I meant? Love She. XX
     
  12. Chesca

    Chesca Guest

    Is the training video available to hire by local AS branches? I would love to view it; I'm thinking of the time we had to choose residential care and it would have helped had I known what to look for, seen some demonstration of an understanding. I'm not knocking those who look after Mum, but their management. Can't help feeling there are too many agency staff brought in who do not have a clue about what they are doing and too many shortcomings of awareness of dementia.

    For an EMI unit there seem to be little things, obvious to all of us, that could be changed. Somebody, I think Chris, on another thread, mentioned the modern signs for the loo . The idea you can throw food down somebody's neck to fit into your schedule, when swallowing is difficult...you know the sort of thing. Just minor illustrations. Certainly all agencies issuing forth incompetents should at least insist on the minimum requirement of having some training and should be buying this. It should be a legal requirement for any agency. Is it already?

    As for reading matter. I have found one of my own problems has been a total inability to concentrate to absorb anything. Am still having problems with it. One of my great joys, reading for pleasure, has currently been jettisoned which is probably why I can't sleep. Is there such syndrome as post AD trauma? Or is it just one of those aspects of the depressive doldrums? Am beginning to wonder. God, moaning again! Never mind, my issue of the Beano has just arrived.

    Wish I'd known of the availability of all the information above, discovered it all a little bit too late. It never even occurred to any of the carer network to point us in the direction of AS. Now I mention it to everyone I meet!

    Chesca
     
  13. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    hi all, I have found that it is impossable to find any training for caring at home it seems that yet again if you are doing it yourselves and saving the goverment thousands you just have to get on with it do they think we were born as carers? I did once find on the goverment carers site a online course for carers but i spent endless phone calls and never did track it down people in charge had heard of it but didnt know how to access it so i just gaveup.I would like something to do at home to keep my brain going and also because in time i will hopefully be joining the working world again. I cannot afford to pay for online courses when i may not find the time to finish them. storm
     
  14. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Storm, I tried that one too, thought till now I was having one of those moments Chesca has just described! Family carer's get all the run around stuff, as though we had all the time in the world, I don't think. I am so pleased that as Chris says, the Alz. Soc. is now getting more things out suitable for us to use, we need to push these absolutely everywhere. Nada, how about some posters for hospitals and GP surgeries, S.S. offices and residential units please, so carers are aware that there is help designed to help them specifically. I will do my area, could we manage to cover the whole of the British Isles between us d'ya think? Wouldn't it be brilliant!!On a slightly different track, early last year, I had to ask three times before an out of date poster for Sat. respite provided by the Alz. soc. was taken down at our GP's, and the one in the local hospital, took that down myself in exasperation. (Can you imagine, you are at your wit's end, think you have found a place for your loved one to spend just a couple of hours whilst you do a quick shop, only to find when you ring that it's over a year since it was stopped!!) Ches, I found that I couldn't hold any thoughts either, still can't really, worrying but there it is. Love She. XX
     
  15. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Thanks Nada, I know the society is doing all it can, and where would we be without it, I just feel really strongly that family carer's never need feel totally alone whilst TP is here for them. They have quite enough pressure as it is. It would be good to get help into some of the places most often visited by them, wouldn't it? Love She. XX
     
  16. Chris

    Chris Registered User

    May 20, 2003
    243
    Training - a broad look !

     
  17. Chris

    Chris Registered User

    May 20, 2003
    243
    FREE Tutorial on Dementia

    You will all be very pleased to know that in our area when the Protocol for management of dementia was produced earlier this year (EVERY PCT had to publish one these by April 2004) I brought up the subject of the CDrom - Demenita Tutorial fo rGPs (created from a research project funded by AS - in turn funded by a single donation of £300k from a family - this created & evaluated several means of educationg GPS ) .

    There was a blank look from everyone including a GP on the panel - he did ask for a copy though - our local branch got hold of a number and the GP took them to a regular mtg of GPs locally when the Protocol was being launched. It was VERY well received. I do wonder what happened to hte original copies that were sent out - one was sent to each GP practice - I gues the Practice Manager will have had it - then what ???

    But - it is also avaiable to all on AS website.

    WHAT IS MISSING - is VERY clear directions to the Tutorial on the website - which is available in its entirity (with video clips, carers talking etc) on the AS website . It si rather hidden at the moment - I think this is CRAZY !!!!! Not only is it a good learning resource for GPs - ther are CPNs, general nurses , families , children - loads of people could find this useful - WHY is it hidden ?????
     
  18. Chris

    Chris Registered User

    May 20, 2003
    243
    Good news story - for a change. This year our Branch was funded by an extra £20 from SS (prob came from a number of different budgets - these things usually do) . What for ? to employ a part time Family Support Worker with a case load of carers to help but also to develop the GP Project - as she has learned about the job & created a network , she will be alllocated a number of Health Centres to work with and provide sessions when she is in attendance. Patients with a recent dignosis of any of the dementias will be offered an appointement with her - they will then have a contact to call upon in the future - and will be offered AS services (in out case this is Carer Support worker, Befreinding Scheme - fo rthe person with dementia, Tea Dances for person with dementia and thier carer, Relazaion Days, Carer Information Sesions, Carer Support Groups, signpostng & intorduction ot other orgs that provide relief carers in th ehome, Day Care centres, Specialised dementia domicillary care at home, Dementia Counsellng etc

    Yeah - its all really good - but , not every knows about it or thnks it is for them ( frequently heard - wish I'd tried this before !) and for us - it ALL came too late & was in wrong area - Mum & Dad lived elsewhere- well except the Relative Groups for me (an emotional support group and also a separate social group ) - for people who have a relative in a care home or reccently bereaved.
     
  19. Chris

    Chris Registered User

    May 20, 2003
    243
    Hello Storm - just re reading some threads.

    May i ask - Have you had a Carers Assessment? Becauase the things yo would like mentioned above - carers training and keeping up with something so you will be prepared to return to work whenever the need arises - these are EXACTLY the things that should be going on these new Assessments. If your needs cant be met - Social services will be in trouble ! they may not meet them straight away but it will show up in htier annual reports etc

    I'm fearful that when carers have their own Assessments done they may not think of things that might benefit themselves- like relaxation sessions, relief care so they can go out for leisure activities or education. It must be made clear on the form if you are caring 24/7 - not GIVING actual care all that time - but having to help someone stay safe & keep an eye on and keep them company (every second sometimes, I remember Dad said he couldnt even go to toilet without Mum getting anxious as he was 'lost', ) and all the rest of it.

    Also - for general training not carer training - there is something called LEARN DIRECT (I think) which is via the internet or on CDRoms - designed for people to learn at home. I think they do all sorts of things - ahve you given your local College a ring? or maybe do a google search for Learn Direct. If you do it thro' local college it may be free - but not sure - mabye depends on subject - there is a lot of computer training free these days. Good Luck.
     
  20. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    hi chris, Have just read your reply i have not been on site lately due to overload of caring i am finding it hard to make time for myself again as are many others. I have had my carers assesment i now get 2 hrs a week sitting service which i have to use to make a mad dash to the shops for supplies.This is after i made s/s fully awarethat i am giving 24/7 care to my mum who is not safe to leave, i also told them it is affecting my relationship with my family and husband as i have nither the time or the energy left for them,yes i am doing a brillant job of careing but is it so wrong to want more i am 48 and i feel like my life is on hold permenantly.storm
     

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