You Must Read This -do Not Become A Carer

Discussion in 'ARCHIVE FORUM: Support discussions' started by mariak, Jun 14, 2004.

  1. mariak

    mariak Registered User

    Sep 3, 2003
    30
    I feel I should come and point out a really nasty reality... I f you have any form of life or employment and are a carer for one of your parents... you should read what I have to say...

    I had a very sucessful career in the media, working regualry and able to support my two children. I have been divorced for many years.
    My mothers illness took a long time for the doctors to diagnose.. waiting for appointments was the reason not the progression. I was advised to become the carer.. recieveing the benefits ..etc (I call this CHEAP LABOUR) we had no offer of any respite care or care in the community.. It was not appropriate.. ??? not sure what that meant. In the meantime I lost most of my career caring for my mother more from love.. but sadly it does not pay bills,.

    Things became so bad my mother became lost and was picked up by the police. We were told that she was now too bad to stay at home and were advised to look for a "Care Home"..as she was so bad Care homes refused to take her and eventually we managed to have her "upgraded to Nursing care".. from that date ALL benefits stopped (sorry you have six weeks hwich you are not told about) to get your life, business and home together again.

    My Mum and I had shared a home and all the bills.. I am now left with all the bills, no benefits and best of all NO CAREER ANY MORE!!! Because I had savings of £3800 to help my daughter at university I cannot claim any benefits... GREAT is'nt it? Thats the thanks you get... I am now about to have to move from the home I have lived in for 12 years because of the bills and no income.

    SO TAKE MY ADVICE...
    SADLY YOU CANNOT CHANGE THE PROGRESS OF YOUR LOVED ONES ILLNESS... BUT ARE YOU EXPECTED AS A CARER TO END YOUR LIFE TOO WHEN YOUR LOVED ONE GOES INTO PERMENAT CARE.... that what it seems to me... so sadly the my advice would be to be cold and calculating and leave the caring to Social services and NHS.... and you keep your job!

    You are simply looked upon as CHEAP LABOUR.. and the NHS would colapse without your help... unless the govt is prepared to do something I would say to anyone that you must leave the emotional, guilt, love etc behind and see the REALITY of the situation and know what it will be like in 12 months time or whatever that time is when the illness becomes so bad that hospital care is required. You are left on your own any benefits, attendence allowance etc all finish.. YOU ARE SACKED WITH NO REDUNDANCY.

    I am sending a copy of this to Mr Tony Blair. Although I know the reply will be the standard issue... "thankyou for your .. etc. etc..." one never knows it may just hit home a few bells... but my advice is to you.. all you carers who love your family.. see the picture as it really is.

    This is written with love... and the knowledge of just what is like to see this horrible illness destroy those you love. They die not just once... but twice when your loved one finally has to go into permenant care and then when they eventually have a realease and die.

    Maria
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    #2 Brucie, Jun 14, 2004
    Last edited: Jun 14, 2004
    Hi Maria

    Your posting does highlight some hugely important things, and you have clearly had a ghastly time.

    I can't speak from the same experience as you, since I was a carer at home for my wife, until she went into care. That is profoundly different from caring for a parent, close though those blood links are. In addition, we had no children to factor into any of our preparations. [Preparations? Hah! looking back, we weren't prepared for ANY of it]

    Certainly the whole issue of caring for someone at home is a nightmare. We had no support worth mentioning - there appear to be a lot of 'officials' going through procedures out there, mostly for the sake of the procedures it seems.

    Coordination between agencies is often very poor and it seems very much a lottery whether one's local health authority will identify and fund Continuing Care patients and if so, whether there is anywhere for them to go, anyway.

    Diagnosis is usually a problem and awaiting appointments is a challenge. We found that when going privately, we were passed around as many consultants as seemed to need money for skiing holidays at the time. National Health Service seems always fraught with delays, if you can ever find parking space at the hospital.

    I suggest you don't hold your breath awaiting a reply from any politician. Unless they have been personally affected by someone in their family having Alzheimer's, they much prefer to spend time deciding whether the Olympic Games should come to the country some time, or pondering on the activities of a few men kicking a football around.

    I think the bottom line here is that everyone needs to make their own decision. Help in doing that is not always easily available. Everyone's circumstance is different, but certainly making any fundamental changes to a family's lifestyle needs to be done with eyes wide open to the possible consequences. Your posting may help others in this respect.

    Dementia is going to fundamentally affect and mess up the life of everyone affected or associated; that's the starting point.

    I'm really sorry you've had such bad experiences, and do hope that things will improve for you and your family.
     
  3. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Maria
    log on to www.tele-democracy.org
    this may be better than writing to Tony Blair.
    Let us know how you got on
    Best wishes
    Norman
     
  4. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Maria

    I believe in everything you say, you have been left with dreadful problems. My mother also lived with us, we sold both our houses and jointly purchased with my husband a larger one. Mum was well then. As her illness progressed I jealously guarded my part time job and kept it up even though it became extremely difficult. I knew that when Mum died our family would need my income and I decided that even if I gave up my job there might still be a time that she would have to go into care and her contibution the household would stop. You were obviously given some appalling advice, by who I wonder. Our GP was most insistent that I never consider giving up work for my own family's sake and none of the social or voluntary worker's that I came across suggested it either. In fact the Crossroads staff that arranged Mum's care for a few hours in the week saw it as part of their brief to give me peace of mind at work.

    Mum eventually went into care last October, EMI home and again we were given good advice about this, hospital consultants and Psychatrists taking a good time to decide this would be the best place and then providing lists of suitable places etc. Mum's sudden deterioration and move came upon me much sooner that I anticipated and again my great GP put things into perspective by saying that I had done all I could much more than most and that it was time to step aside and let the professionals take their turn.

    I do hope you manage to start and turn things round and maybe return to the job market in the near future.

    regards

    Geraldine
     
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,581
    Female
    Dundee
    I read your posts with interest. I am in a slightly different position as my husband is still in the very early stages of AD but I know things will change in the future. Currently I have a full time career and we have a mortgage to look after. My husband is considerably older than myself and has been retired now for around 12 or 13 years. I have another 7 years to go before I could possibly consider retiring and I have a well paid job which we need! I often think to the future and wonder what I will do if things deteriorate quickly. I feel guilty about thinking that I must keep my job but I know I will have to and it is a career rather than a job - this makes me feel more guilty. I just hope that when the time comes I have as good help and advice as you seem to have had, Geraldine.

    Izzy
     
  6. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Giving it all up to care

    I have read the previous messages with interest. I think that perhaps there is a difference between caring for a parent and caring for a husband/wife/partner.

    This is how I have felt about caring:-
    My husband became unable to work 6 years ago, and managed at home, just about, for another 2 years when I had to give up a very interesting full time job, which I had been employed in for 10 years. Once it became clear to me that he needed me at home to care for him, I didn't hesitate to leave the job - there didn't seem to be any question of not caring for him.

    This meant that the only income we had was his Incapacity Benefit, DLA and my Carer's Allowance. We didn't have much in the way of savings as even before he had to give up his self-employed work his earnings were minimal for about 4 years as he found it more and more difficult to work and earn money. At the time we had one son at University and one living at home and about to go to University, plus a mortgage, and I had been paying all the bills for some time.

    The benefits were not sufficient to live on and pay the bills when I gave up work, so we had to sell our family house and move to a much smaller one in not such a nice area, away from our very good neighbours, but by then even this didn't matter much to me compared with the anguish of gradually losing my dear husband.

    We just about managed with the benefits and dipping into the small nest-egg left over from selling our house and paying off the mortgage, and fortunately I don't mind getting my clothes from charity shops!

    Nearly six months ago my husband was admitted to an elderly dementia assessment unit (he's still there). This was 3 days before Christmas, and of course his DLA and my Carer's benefit stopped dead. So as soon as the Job Centre opened after New Year I was on the doorstep trying to sign on, although I realise now that as I was prone to burst into tears in inappropriate situations (eg when I saw a favourite food of my husband's in the Supermarket) I probably wasn't much of a prospect for an employer!

    I spoke to a very sympathetic person at the Job Centre and when I explained why I was looking for a job she said that no way should I think of working just yet (I was under 60 and so no pension!), and told me to go to my GP and get signed off. The GP agreed and signed me off as having "Stress Reaction" - I think he was right.

    So for over 3 months until I turned 60 I had just over £50 a week Incapacity Benefit to live on (more dipping into savings!) Then just before my 60th Birthday when my state pension started, I was offered a freelance 2 day a week contract for 6 months in a field of work related to what I had done previously, and I agreed to do it. Although it is challenging work, especially after 4 years working as a carer, I think it is good for me to do it, as it is 2 days a week that I can't spend brooding over the situation. I still visit my husband (a 40-mile round trip) 3 or 4 times a week, and just recently I'm not sure that he really knows me any more, but I feel it is important for him and for me to carry on visiting.

    I have now decided that if anything presents itself to me, such as a job, an outing, a meal with friends, or even a holiday (just went and stayed for a week with friends in France - first real holiday for years), I say YES, and think about it later. I was able to go on holiday without much guilt, as I knew that my husband would be visited almost daily by his brother, friends and one of our sons.

    I don't think that I could have taken any other course, and all the things that have been given up (house, garden, job and my colleagues at work, money, holidays, independence, etc etc) count as almost nothing compared with the pain of losing my husband to this disease. I have probably become wiser and more compassionate through this experience, but I would happily return to the old unreconstructed me if I could have him back as he was.

    One thing I feel I haven't suffered from as much as some people who write to this forum is GUILT.. I believe that I really did as much as I could for as long as possible (and a bit longer) before I had to let him go. It was absolutely horrendous at times, but I was very fortunate in the support I got from friends, from his CPN and from his brother, without which I would have foundered much earlier.

    I think it is impossible to say what is the right choice for anyone to make about caring - it depends so much on the relationship, on circumstances, on other family responsibilities, on what other help and support is available and on our own personalities.

    I didn't even think about whether or not to do it - and I know that if things had been the other way round, my husband would have cared for me as long as possible, but that's just a personal response and I wouldn't want to tell anyone else what was right for them - except that you have to listen to what your heart is telling you, not just your head, and then be truthful to yourself!

    Kind thoughts to all who read this.

    Ruthie
     
  7. mariak

    mariak Registered User

    Sep 3, 2003
    30
    thanks for reading my post

    I do want to say thankyou to all who read my post... I suppose what really annoyed me was listening to the BBC discusssing "Carers Week".. we all know the NHS is falling apart and that without carers the system would fail completely.. so why not support carers... and post carers until they are able to get their lives back in order. We are not all "scroungers" to care for somebody we are obviously not of that nature.

    But I still have to say to anyone entering into this dark tunnel... leave the caring to social services and NHS and you be the SUPPORT.... not the other way round.

    This allows YOU to take a VERY active role in your loved ones care without the stress and future financial problems. Of course Social Services will want you to be the Carer... please dont leave your job... especially if you have a job that you will need whren your loved one goes eventually into permenant care... or sadly dies.

    I wish you all well...
    Maria
     
  8. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    I have to say that right now I am in complete agreement with Maria. Our situation is very similar to that of Geraldine, in that we moved house using the money from our house sale and that of my Nan's to buy a larger house which would accomodate all of us.

    It now seems as though we can find no solution to our problems. My Nan is getting worse and worse and my Mum cannot afford to leave her job and look after my Nan, so we're faced with having people come in to do the job, which my Mum doesn't really want as you hear so many horror stories. My Mum has suggested my sister and I taking on the caring.

    My sister and I are really quite angry at the moment, as it seems as though our needs are being completely ignored so that my Nan is cared for. We are both at Uni and are living at home. We both work over twenty hours a week and I have somehow managed to gain a first so far in my degree, but god knows how! I feel as though I'm going to break at times and I know my sister feels the same. It feels as though there's no way out and both of us have no choice but to live here! I've got another year and my sister at least two to go at Uni!
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Emma

    I seem always to talk about 'in an ideal world...'

    For example, in an ideal world, a whole family could pool its resources [time, home, etc] to provide the best care for their own kin, because they have the closest [blood] ties, and know the person with dementia best; they would not consider letting anyone else do the job.

    Now let's enter the real world

    The real world is a practical world, and some people in the family of a patient are older than that person, some are the same age, some are younger - some are hugely younger. Some may be less well, but in a different way. Some may live continents away, or halfway across the country. Some have young families of their own; some have careers; all have to work in some way, to live.

    I always speak only for myself, because it would be daft to try and map my situation on anyone else. I chose to care for Jan at home for as long as I physically could. My decision affected no-one else in the family grouping. So no-one else was hauled in to help, or to provide financial support.

    Providing care at the level required for a medium or advanced dementia patient is demanding enough at the best of times, and no-one should need do it unless they choose to. This is lapsing back into the 'best of worlds' of course, because there are situations where families have no other choice than to do the caring, at least in the short term.

    One would wish that there were sufficient properly funded care homes around the country, and that our relatives could receive care there. Yes, I know we all fight 'putting him/her' into a home, but, again speaking for myself, Jan gets better care in her home than I could possibly provide at home, even with the maximum help.

    The other point is that, while my days are fractured by my wish/need to visit her every day at her care home [except one day, each week], outside the 3 hours each day I'm doing that, plus a couple of hours over the week shopping for Jan, or cooking special things for her, I can live a more or less normal life. I can sleep at night.

    When we are in a situation that seems to have no solution, we sometimes say daft things, almost in the expectation that the other person will say "don't be silly - you know I can't do that". I reckon your Mum was in that situation when she suggested you and your sister taking on the caring, as well as studying for your degrees. But one says the daft things almost as a box-ticking exercise, something that has to be gone through to move on to the next step.

    Look at it this way. You are at a critical stage of your lives, a crossroads. The path you take now may determine your entire future. If you blow your chance at university now and your Nan lives another 3-4 years [or more, anything is possible], then you may live the rest of your life having not reached your potential, and maybe even blaming your Nan and your Mum for that.

    There are other ways to look at it of course.

    You could do the caring now and be able to re-start your university time later on. You would be more mature then and would undoubtedly have gained a huge insight into yourself, by doing the caring.

    If you wanted my ten cent's worth, as they say, I would suggest you as a family review all the options now, starting with the current state of your Nan's dementia. Is there the possibility of Continuing Care funding? Is Mum totally against a care home? etc. If you want a list of questions, the folks who use this forum will add 'em in.

    Setting everything down on paper can clarify the options.

    You've probably done all this before - if so, re-visit it.

    In my view unless you strongly, and to the exclusion of everything else, wish to care for Nan, you shouldn't have to - UNLESS there is no other possible choice [ie it is not a choice].

    Have I rambled too much?

    Bottom line: this is a hell none of us ever wanted or expected to be in and we can only do our best.
     
  10. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    Thanks for your advice Bruce. I think I really just needed to get things out in the open and writing it down here helped.

    I have printed off the messages and am going to try and talk to my Mum about things. I know my parents are trying their best but it recently seems as though my Nan is the focus of all conversation. I told my Mum about my marks at Uni the other day and she really didn't seem interested, and my Sister has given up even telling my parents what marks she gets. It feels as though right now they aren't even supportive of us being at Uni and would prefer it if we got jobs. I don't think my Mum believes that a degree is going to help us in any way at all.

    Anyway, that's enough of my moaning. I'm going to try and speak to her and sort something out, although I'm not sure what as if my Nan isn't here, we'll have to move house!
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Emma

    bear in mind that when one is the first line carer, like your Mum, to do it properly you have to make anything and everything else simply marginal. It is totally draining of anything other than the thing at hand, and one has no energy for the slightest deviation - otherwise one feels one will lose the plot entirely.

    After all this is over when she has time and energy again, your Mum may feel really guilty at having not attended to your needs.

    Try and take things slowly, if you can.

    Don't forget - no matter how bad things seem, they can always get worse!

    ....they can get better too, of course!
     
  12. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Dear Emma

    When I read your message I wanted to be able to pick up the telephone and say...DON'T DO IT and I wanted to be able to talk to your Mum and ask if she realised what she was asking you to take on. To be the sole carer when you have willingly taken it on as I did is an almost impossible task to do it "under pressure" I imagine it would become intolerable. About this time last year before Mum went into care I was beginning to crack, Like your Mum I only had time to look after Mum and as Brucie said everything revolved around this because I felt that if I'm did not have control me and the whole family would go under. I had to do everything for my Mum, she had forgotten where the loo was and how to use it, she could not dress and undress, I was getting up several times a night to help her to the commode or to settle her from a nightmare. When she woke early she expected to be got up and for me to get up as well. When I was ill she could not bare for me to be in bed recovering or evn to have a nap on the sofa. If I was making beds upstairs even for a few minitues Mum thought she had been abandoned. I was desperate for someone to say I could not go on and it was time for someone else to take over, I wished everyday that my husband would say it was all getting too much for everybody, but bless him he never said a word. Even though my Mum (because of the illness) used to say some quite nasty things he gritted his teeth and supported me as much as he could. Maybe your Mum is ready for someone to point out it is all getting too much for everyone. How does your dad feel or could you go to the GP on her behalf I always found mine very helpful and understanding. Sorry to be telling it like it is, but I always told my Mum I could look after her at home, I never realised what an impossible task it would be. I could not physically do it now and it was this that was often the hardest bit. Mum now needs two people trained in lifting and handling to move her from chair to wheelchair or dining table as well as to get her into and out of bed. I now visit 2 or 3 times a week am looked after by the care staff while I am with her and when I am at home I have time for my family and time to be normal.

    Good luck in whatever choices your family makes

    Geraldine
     
  13. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear Emma
    Please think things through carefully and take Geraldine's advice.
    My dad was put in a nursing home 3 years ago for the sake of my mum. It was a very hard decision, but for a year my mum and us kids were under a terrible strain and i became Dad orientated, as i felt it was the least i could do for the sake of mum and dad. My family suffered as did my work and at the end of it we could no longer cope with the severity of the illness. You have your whole future ahead of you, please make the most of it and make your nan a very happy person.
    It is a very hard decision and it was at least a year before i came to terms with what we had done - but very seriously - we could not of coped at home any longer however much we wanted to.
    I hate to say it but things are only going to get more difficult and bear in mind a good home will meet the needs of your nan far better than you can - the have the expertise.
    I hope this helps, many congrats with your results - my daughter got hers last week - 2-1 and 1 year to go.
    Find time to enjoy life as well as be a carer, take care Sue
     
  14. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    I just wanted to say thankyou to all who replied with their advice. I spoke to my Mum the other day and I think it eased a lot of tension (well on my part anyway). She said that she was just offering us the option of caring as she didn't want to take on a care package and for us to then say we didn't like having people in and out of the house when we were trying to do uni work/make lunch etc.

    I don't think my Mum or Dad are really keen on the idea of homes as yet, since doing that will mean moving out of this house which we have all put so much effort into doing up for the last three years since we moved here.

    It still seems a bit of a no-win situation, but there's not much any of us can do. My Nan has diabetes and has to have an injection in the mornings, supposedly before she eats. However my Mum leaves for work at 7.15 each morning so does the injection at around 6.30 before they eat breakfast (which is what she was told my Nan's attendance allowance was going towards). Now the O.T is saying that my Nan is going to have to pay for her care package, however she also says that there are no carers that will come to the house at that time in the morning!!

    My Nan has been very hard work today, as my Mum has just gone back to work after being off with back problems for the last month and a half. She's been very confused and according to my sister, didn't eat lunch until 3.00! She then proceeded to make a cup of tea after boiling the kettle countless times and then left the milk in the cupboard. Lately she has been wearing lipstick and very pink blusher which has surprised all of us as this was something she would never have done whilst in the house.

    And the story goes on......
     
  15. janey

    janey Registered User

    Jun 29, 2004
    86
    I just want to say how very useful I've found all the contributions in this thread - what you all say rings so many bells and is very helpful in trying to plot a course forward through my own situation. So thanks to all of you for being so open and frank!
    Emma - I really hope you and you sister can give it your all at uni. I stunned myself by graduating last year with a first but at my age (46) its far less useful to me in the job market than if I'd been younger. However, I've now got the thrilling option of going back to do an MA if I can square it with my conscience (which this thread has helped me with), and the three years I've already spent at uni were the most fulfilling of my life. I understand how incredibly hard you have to work, and how uni takes over your life, but I really hope you are able to do it and get the most you can out of it. I'm sure your nan would want that for you too - when my mum was still able to speak intelligibly the one thing she always remembered about me was that I was studying, and she always wanted me to tell her all about it. Best wishes.
     
  16. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Hi Emma

    a bit off thread but your stories about your nan in the kitchen reminded me that one of Mum's 'favorite' things to do was to fill the coffee jar up with water instead of the cup.....

    I don't know your financial situation, but would you really have to leave the house if Nan went into care, if it is jointly owned you should not have to sell it, as I understand it, your Nan's share would be disregarded as having little resale value and her assets would be savings and pensions. Have a chat with the Welfare Rights people your local Social Services should have the number, or I believe Age Concern also have advisors.

    regards

    Geraldine
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.