1. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hi all,

    I am seriously thinking of giving up work to care for my mum who is in a care home. Is that daft? I am finding it is taking up more time than I imagined for her to be there. For example, she has elderly friends who want to visit, and there is only me to take them to see her. This can mean a round trip of 30 miles. She wants to go to the shops every week, even though she doesn't want anything in particular, she just likes to go, and there is only me to do it. She now wants to go to church on Sundays, and there is only me able to take her. It seems that it is all taking over my life and I can't cope with it alonside my fulltime job, and I can't deny her what she wants, so my job has to go.

    We talk about Christmas cards, it is going to be me who directs her to who to write them to.

    Can I claim Carers Allowance even though she is in a Care Home? I suspect not.

    Does anyone else have experience of this?

    Margaret
     
  2. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Funily enough Margaret,mum had a letter from the pension service today asking if anyone claimed carers allowance.my ex works for the DWP and he advised that carers allowance can only be claimed if carers give at least 35 hours care a week and earn less than 95 pounds a week(sorry,the sterling symbol won't work).

    its wrong that carers are discriminated against for trying to hold down a job and care for loved ones at the same time,but thems the rules am afraid.

    love elainex
     
  3. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    #3 DeborahBlythe, Nov 25, 2007
    Last edited: Nov 25, 2007
    Coming from the other way around

    Hello Margaret,
    It is no easy option when a loved one goes into a care home, in my experience. I do not feel confident to leave my mum unvisited for more than a day or two and have been unable to take a longer break for quite a while.

    In my case I simply don't trust the home to look after my mum properly. And yes, it is utterly exhausting if you are trying to work full time, I reckon. I've taken a decision to work part time because work has been fundamental to my life for almost thirty years and I can't simply stop needing it for my mental, physical and financial well being.

    My compromise has been to find a part time job as near as possible to my mum's care home. I get to see her in my lunch hour on some days, and after work on others, apart from the days off. I give myself one dedicated day a week when I won't go to the home but will do something for myself. Other unvisited days do occur when I am very tired or cannot get out from work. It's not ideal, but nor was the period ( about a year) when my mum's care needs were overriding every other avenue for me . I was out of work and struggling to keep abreast of a parade of upsets concerning my mum.

    I have never cared for my mum at home but I certainly have been a carer and advocate full time for her, unpaid and I don't recommend it. Some manage heroically, but I ended up overwhelmed.

    I know my mum can't have many more years left and I am still thinking hard about whether I could bring her to live with me for her final years. However I have a back problem and unsuitable house so I'm also thinking of moving house to achieve this. And then I think, perhaps it is unfair to move her again even though she has always wanted to be closer to her family.

    Sometimes the questions go round and round in my head and the status quo wins out because the alternatives are so hard to achieve and also full of potential problems. Time doesn't stand still though, unfortunately and the longer I delay making a decision, the likelier it will be that my mum stays where she is.

    You may want to read a very funny and moving book by Michele Hanson " Living with Mother, Right to the Very End" which was published last year by Virago.) If you can work from home (Michele Hanson is a journalist) I think it solves one small part of the conundrum but only one small part. As far as I recall, her redoubtable mum Clarice did not have dementia, though, just a very strong character!


    My best advice is don't give up work, or at least, don't give it up entirely. Think what it means to you even if only in terms of social interaction. The life of a carer at home is graphically described in other threads here on TP. Some sail through and many, probably the majority don't.
    Kind regards, Deborah
     
  4. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi Margaret, I went from full time work to 12 hrs a week to look after mum, then things got to a stage where she needed me full time.

    I really missed working especially the contact side. I don't regret the choice I made, but it was very lonely. I must say I have never heard of anyone giving work up to look after someone in a care home. But I can understand where you are coming from with this post.

    I guess it is all about choices and I do admire the fact that your prepared to give your job away. Financially, for me it meant the purse strings would be much tighter and I was very aware that this would be the case.

    I should imagine that you have thought all the negatives and positives through, and what ever you finally decide on, I hope it all works out well. Regards Taffy.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,866
    Kent
    Dear Margaret.

    It`s a guilt thing again. It`s a guilt thing in disguise.

    You know your mother isn`t happy, you are not happy, you`re finding visiting and other responsibilities taking over your life, you can`t stop that, but you can stop work.

    But as Deborah said, think very carefully before you make such a big decision. If I could even work 2 hours a day, just for some social interaction, with different people who are not bogged down by caring, I`d jump at it.

    Caring full time is one of the most isolating ways of living you could ever imagine. Just think, I said I`d love to work for a couple of hours a day, not for the money, but to meet people.

    And one final thought........there is no guarantee either you or your mother would be any happier.

    Love xx
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Margaret,

    Others have said it so well. Think very carefully before you give up work. The social aspect is so important, so many carers say the hardest aspect of caring is the isolation. I know at one stage I was on the verge of a breakdown through sheer loneliness and frustration.

    The other thing to consider is that your mum will continue to deteriorate. I know this is hard to watch, but as your mum withdraws she will become less demanding. And that can happen very suddenly, as with John's UTI. I know your mum has suffered from them too, and they can have a devastating effect in the later stages.

    John now sleeps most of the day, and I go in at mealtimes to feed him. Sad, but I now have time for other things in my life, and if this happens to your mum, you may well feel sorry that you no longer have work to fill the gap.

    It's your decision, of course, and if you really feel you can't continue, then of course you should give up work. But I'd suggest you look around for other interests before you decide.

    Love,
     
  7. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    Dear Margaret

    Please don't make any hasty decisions about giving up your job completely. I considered it for a while when my Mum was living with me and I am so relieved that I didn't. Consider the option of part time but also look at how you can soften the burden that you are carrying.

    I was struck by your comment about having to ferry your Mum's friends back and forth. This seems rather hard on you. I know it means your Mum will have the visitors but you should not be turned into a taxi service at their beck and call. Could you schedule a set time once or, at most, twice a week and they take turns or go in small groups. Could you arrange to meet them on the shopping trips to save a round trip to the home? Doesn't the home have facilities for residents who want to got to church or could you talk to the church and see if anyone there could pick your Mum up and take her sometimes? My brother is disabled and has this arrangement with a couple of good people at his church.

    It took me a while to get used to having other people care for Mum and to trust them to take responsibility for some of her needs but I knew I had reached the point where I could no longer do it all myself. I had to take a step back for my own health and sanity and thank God I did.

    Best of luck

    Liz x
     
  8. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    If only-daily decisions.

    Dear Margaret,As i have been disabled for 21 years, when Peter was diagnoised at the age of 58, I became his carer. I was always holding resent inside because I could not work and continue using my qualifications. So I entered the 24/7 world of Alzheimer's. I became Secretary of the Local Branch,did enrole on a Course at the local College and boy did I love it. Peter had a Carer with him whilst I was there. Unfortunately, Peter became worse and I had to give up College and I was devestated.In May Peter was placed in a E.M.I. Unit and is in the last stage. It was only when my son and daughter in law took my on a two weeks holiday on the Norfolk Broads, I found ME and it was a wonderful feeling. During all this time of A.D. I had forgotten ME. I just wished I had listened to my family and friends during the last 4 years. Only you can make the decision weighing up pros and cons. Would you miss work? This is only my personel view but if I was able to work, I would organise everything so I could keep the job and to me that would be my respite.
    Good luck in you decision. Christine
     
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    My advice is don' t give up work , your regret it in the future well I am taking about myself yes I regret it and I know they say you should not have regret in life well I have , did not released how much I like connecting to people and you lose that connection with people, you never know what you got till it gone ....and you only get one go at life, so don' t deny yourself a life


    that why after 2 years that I gave up full time time work , I went back part time , but found that I could not take the stress of organizing working even part time and caring for mum at same time , I use to be a person that work better under stress , well can tell you caring for mum full time took that all away from me.

    If you can organize part and helping taking you mum out on days she like to go out , go for it
     
  10. Natashalou

    Natashalou Registered User

    Mar 22, 2007
    426
    london
    Have you discussed any of this with your employers? Mine were very supportive through all the problems I have had with my mother going back two years and although she is now in a home, not fully resolved.
    Through various patterns of reduced hours, flexi working, change of office location to one nearer her care home, and even some working from home, I have managed to keep my (desperatly needed) job .
    Im currently working full time again but if something happens there isnt any problem negotiating time off.
    Many emplyers are more understanding than you might expect, they dont wont to lose reliable staff and recruitment and training new staff is an expensive process.
    I do hope you can work something out
     
  11. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hello Margaret

    I'm with those who advocate you NOT giving up work at the moment. Definitely approach your employer. They now have an obligation to consider your request and if they refuse, give reasons why they can't accommodate a more flexible working pattern (they have to argue the business case).

    Lizzie's response also makes sense about asking around to see if the load can be shared, in terms of ferrying your mum about. I think this disease turns us all into 'willing donkeys' at some point and the more we do, the more we are expected to do. Also, we carry the guilt monster on our shoulder if we even consider saying, 'no'. I think you should sit down, consider your working pattern, what your mum needs in terms of your input and what YOU need in terms of having a life as well.

    I hope you get something worked out that suits.

    Best wishes.
     
  12. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    723
    London
    Dear Margaret,

    Just to echo what the others have said, do think seriously about making such a big decision. I understand that you want to give your Mum as much time and attention as you can, as we all do, but your sanity is at stake too.

    I work part time and my parents are looked after in care home/hospital. I suppose I am lucky in that I feel that they are well looked after by professionals which I am not. I visit them every three or four days which I think is about right. A lot of the time I'm not seeing them is spent looking after their house (which will be sold soon), doing their accounts, washing etc. I do allow myself some "me time", I did feel guilty at first, but I don't any more, because deep down I know that is what they would want.

    Anyway, I ramble. Working part time not only helps pay the bills, it keeps me sane. I work in a shop so meet the general public and have a lot of colleagues who are younger than me and have their futures ahead of them which is so positive when I spend a lot of time with people whose lives are drawing to a close. My employers are very understanding and I think they are not in the minority. And I think most important of all, it keeps my brain active. I look at my mother in particular who has AD and fear, as a lot of us do, that I will end up the same way. So working is not just a job, it is many other things as well.

    I hope you come to the right decision for you.
     
  13. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dear everyone

    Thanks for your kind and sensible messages re giving up work.

    I do already have a flexible arrangement re working hours, that is a bonus, I am a lecturer, and for example I don't have to be at work till about 4 p.m. on a Tuesday (I teach till 9 p.m.), so I visit mum at 1.30 for an hour, but on the other hand I teach at 9 a.m. on a Monday morning, and if I am not in advance with my preparation, it has to be done at weekend - you can't turn up at 9 a.m. and say to the students "come back tomorrow, I'm not ready". I could go part-time, but it aint that easy. At the moment I more or less dictate my own teaching as I'm in charge of my programmes (which is half my job). If I went half time, the programme management would go, and yes, I'd have less work, but I could find myself teaching 9-10, 2-3 and 8-9 on a particular day. I live nearly 50 miles from my workplace, so I can't nip home or visit mum in between.

    I think it has to be a complete split from the job, and try to get something different nearer home that is also less stressful. Trouble is I've been in academia so long I am used to it and probably no use at anything else!

    To be honest, the job is not thrilling me like it used to anyway, but it has been a demanding (lower) managerial level, and I will probably miss the buzz of solving problems.

    To Liz, Mum's home is about 12 miles from where her friends live, and being rural the bus visits 97 villages en-route and takes about 2 hours, so it isn't on for them. They are not a group of people, they are all individuals. And it is amazing how picky they are. Her best friend Amy can't go on Monday cos she goes to see her sister Freda. She can't go on Friday either cos she goes somewhere else. Elsie can only go on Wednesday afternoons, and only if her son isn't visiting. I am afraid they are all of that ilk. Stuck in routines that can't be broken. They are all non-drivers (none of them ill or infirm in any way). No, the local church doesn't have a team who take the elderly to church (her previous local church did, they were fantastic).

    I am moaning about nothing, I know that. I'll get used to it all eventually.

    My next thread is even more moaning. Think I'm just going through a bad patch. I don't know what I would do without this site and the fantastic support from you all.

    Much love

    Margaret
     
  14. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello again Margaret. I hear what's being said about giving up work- I'm in the process of doing just that to care for my husband at home-he's 71 . I'm 54. If he was in a care home I'd be thinking differently. I only worked 14 hours a week-but that was over 4 days and with travelling time,extra meetings, etc was more than that.I have reached a point in my life where I feel I need some quality of life and to spend some quality time with my family and husband(especially my husband-before the inevitable happens) and have made that decision FOR ME. We all have different circumstances -but the most important thing to consider ,I think,is yourself. Love Gigi x
     
  15. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hello Margaret

    Although I am retired I have, for the eight years that I have looked after Mary, I have been chair of governors at my local primary school a job I adore. It has been a hard struggle but despite having to pay for sitters which I can ill afford it has proved to be my lifeline and kept me sane. My full time careing finishes on Monday and I am so pleased that I struggled on as I can now devote the time to my chosen job that it deserves.

    I would urge you to think carefully before giving up your job, there will come a time when you will desperatly need the social interaction and sadly your current situation is temporary to a greater or lesser extent. Try to consider the long term.

    You are not moaning about nothing and have no need to apologise.

    Hugs

    Dick
     
  16. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Wise words, Dick!
     
  17. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dick,

    Thanks for that. You have just reminded me of something I could do if I gave up work - become involved in my local primary school. I was Treasurer of the PTA for years, my husband was a local councillor, we have always taken an interest in the community.

    Dear everyone, I am in the fortunate position of not being desperate for the income, I could manage for a couple of years on savings and bit and bobs, which is what I think I need to look to. The next couple of years.

    Thanks all, you are stars.

    Love

    Margaret
     

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