1. Kittyann

    Kittyann Registered User

    Jun 19, 2013
    #1 Kittyann, Feb 8, 2014
    Last edited: Feb 8, 2014
    I'm a single woman and an only child and I work full time. I've been caring for my Mother who has dementia for the past four years. She has now reached the stage where she needs somebody to be with her all the time. I've been using a mix of public health and private carers during the day and I take over at night and weekends.

    But lately I've been getting an increasing number of phone calls during the day from the carers for one reason or another. The latest was because my Mum wouldn't let one of them in. She really wants me there all the time. So I'm just getting to feeling that it would be less hassle and less stress on me if I just gave up work. Because its getting really hard to keep up with both work and home demands. I can afford to do it for a while and I know it won't be forever.

    But I wondered if anybody here had done the same and has any advice one way or the other before I make the decision. Nobody I know in "real life" has been through this so while their advice is well intentioned its not based on experience.
  2. Lizjg

    Lizjg Registered User

    Dec 29, 2011
    Near Newark / Grantam
    Hi I worked in school and I was given a term sebatical as my Mum was going down hill and I wanted to be able to give my Dad some time off on a regular basis. Is it worth seeing if you can get some time off as a sebatical before rather than giving up work, therefore giving yourself some breathing space.
  3. Noorza

    Noorza Registered User

    Jun 8, 2012
    While I think it is commendable it has the danger of making a person feel trapped. Work is a stressor but is it also an escape? You say you can't afford to do it long term, have you thought about what would happen when you run out of funds to care, then you'll need a care home and be jobless?

    This disease is unpredictable, I may also consider, from my selfish perspective if the time for a care home has now come?

    These are just things to think about, but am sure you have already.
  4. massy

    massy Registered User

    Oct 13, 2013
    hi Kittyann, I would think very carefully first. I gave up work to look after my mother and brought her to live with me. I finished work about 6 months ago after the stress of having to take time off because of mum's illness and running out of work at a moments notice. I didn't realise how isolating this would be because mum won't leave the house. I can't help but feel resentful especially when I see my sisters still having a life. I feel like a prisoner. Think about it very carefully and see what support there is out there first.
  5. kingmidas1962

    kingmidas1962 Registered User

    Jun 10, 2012
    South Gloucs
    I'm afraid I am going to say don't give up your job permanently ... I would maybe consider a work break, maybe, to assess mums needs and possibly arrange full time care.

    I probably sound very uncaring - I'm not, I've steered both parents through the minefield of dementia (dad) and complete carer breakdown (mum) and my job was the only thing that kept me sane. That may not be the case in your situation (obviously a lot of folks are stuck in jobs they don't like) but if it is at all possible to maintain a balance between caring and personal space I would do it.

    Bless you though for being so caring xxxx
  6. dottyd

    dottyd Registered User

    Jan 22, 2011
    #6 dottyd, Feb 8, 2014
    Last edited: Feb 8, 2014
    I would echo that.

    I have not done it . I take my hat off to those who have been able to . It's a very long term commitment.

    My aunt went into a care home after a fall following the death of her husband of 62 years 18 months previously.

    That she lived another 5 years there can only be down to the regular meals, good healthcare and so on. She passed away aged 92 last year.

    I'm surprised she lasted so long as when she went in she was such a frail little lady and terribly confused.

    She had a gall bladder problem over a year ago, went into hospital twice for that and then operated on over a year ago and then she had a fall resulting in a broken pelvis last year which saw her in hospital again and she rallied again in a way that I didn't think she would.

    After that she never walked again and was hoisted on and off the loo and everything else that goes with it and over those years she had a whole army of carers who flitted in and out of her life from week to week, month to month, year to year.

    Some will have gone on holiday, taken sick leave or left the home or the profession but whatever their decisions and the end of the day ....it was their job.

    They could walk away.

    It could be such a long haul and the only way is down with very little in the way of diversion and respite.

    That's the sort of commitment that is exacted from you.
  7. Kittyann

    Kittyann Registered User

    Jun 19, 2013
    Thanks very much everyone for your replies. You've given me a lot to think about. I guess I'm just feeling overwhelmed trying to keep everything going and was thinking taking time out of work might be the easiest option. But maybe not.
  8. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    eastern USA
    I would myself have long ago ended up in a mental ward of a care home if I had quit my job in order to take care of my mother. My work, it turns out, while it is a stressor, also helps me keep my sanity. It is such a relief, some days, to head off to work, leaving all those household cares regarding my mother to her very competent caregivers. *What* a relief! My work provides me a whole outlet and identity apart from my home. It is my primary reason for being able to handle the emotional rollercoaster of the home life, in fact. It never argues with me; it's just there, giving me solace that there is indeed an outside world there, and I am not going to go crazy at home.

    Please look into the alternatives for home care that can be found. Most on here from the UK seem to know the system well and can advise you about finding some assistance. Perhaps start a new thread on finding assistance, before giving up your job!
  9. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    Auckland...... New Zealand
    I'm another one in the camp, of staying in your job as long as feasibly possible.
    I wouldn't say I love my job... Been there 24 yrs :) but I only work part time, and it is certainly a relief to be able to leave home behind even for 6 odd hrs.
    Ocassionally I think it would be so much easier to quit, but Mum isn't even at that stage yet of needing more care. Dad is there but he doesn't really "help" he's more there for supervision.
    In saying thsi I am about to reduce my days from 4 to 3.
    I am hoping the extra day will give me time for me while the children are at school, and Mum attends an Alz Activity group for 2 hrs in the morning, but she did say to me that I could come with her :rolleyes:
  10. Auntiep

    Auntiep Registered User

    Apr 14, 2008
    I feel like that and I've omly been off one week!

    Sent from my GT-I9195 using Talking Point mobile app
  11. retiredcopper

    retiredcopper Registered User

    May 17, 2011
    I echo everyone's comments Kittyann. I am retired & in my mid 50s so I had the time to look after MIL but the last 4 years were so very stressful. She has now been in a nursing home for 2 months & I feel like I have my life back & she is now getting the care that I and the carers could no longer provide. The only things that were a 'release' for me was the voluntary work I do for the Air Ambulance (which I had to cut down to one day a month) and a weekly community choir that I joined a year ago. They kept me just about sane but there were times I wished I was back working just to divert my mind for a while.

    You are obviously a loving daughter & putting your mum first but you too have a life & when the time comes to 'resume' your life you may find it hard to re-integrate back into a working & social environment. Can you cut your hours down or just take a long holiday & see how you feel about caring for mum exclusively - you will probably find that you still can't meet all her needs & may have to consider 24/7 care in a nursing home. Whatever you decide I hope it all works out for you & mum.

  12. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    It certainly sounds like you need a break, but maybe you would feel differently if you took some unpaid leave, if that's possible, or a holiday? sounds like you are just worn out. i don't work now, but I feel if you aren't working you have to make sure you have plenty of interests that take you out. it might be hard to build this up while caring. also, remember that you will have to still pay for care, so you can get out. the social side of not working is difficult, you do become more isolated.

    i guess the other thing to think about is whether you will be able to get back into the work force if you leave it for say, 5 years. A lot of that depends on what sort of work you do, and also what age you are. I wouldn't imagine it would be easy to get a job again in, say, your 50s, I have a friend who is in that position and employers always pass her by for younger people.

    i am mindful of how we talked about my partner giving up work to come up here to be with me, and I read on here someone said, yes, but then the person gives up work and then within 6 months the sufferer dies, and you no longer have a job (and in our case would have moved house).

    it's an interesting dilemma, good luck with your decision, there is no right and wrong, I also know how it feels when your mum says you are the only one she wants to have look after her, and i do understand that she doesn't want a bunch of strangers in.
  13. geordie

    geordie Registered User

    May 11, 2010
    I empathise with you as I am in a very similar situation.
    I have debated this issue repeatedly - and have to confess am not totally satisfied that i have made correct choice and still ponder the give up work completely solution when the going gets particularly tough.
    The advice others have given me has been unanimous - keep working, at least PT - so that you have another identity other than carer and have a role and function for when the time comes that you no longer have a caring role. The £ aspect and the imapct on pension contributions etc is also worth considering.
    My route through this has been to reduce my hours to PT - so I care for Mum for parts of every day - even when carers are involved, it is only for 3-4 hrs (she is reluctant to eat/drink for them). I have chosen to give up every other social outlet - so I am either caring or at work.
    Its also worth considering this from a different angle too - which I hadn't thought of. Giving up work to be FT carer could place your mum in a very vulnerable situation should you become ill etc and not be able to continue a caring role. Having a mixture of your care and bought in care means that she is known to a care provider and (even though she may not 100% like it) she would not be in the situation of having to start to build those links at what would be a very stressful time for her.
    HR have advised me that I can apply to take a carers break - my dilemma of course is when to do so as the health care providers cannot provide any real guidance as to trajectory.
    Best wishes
  14. dottyd

    dottyd Registered User

    Jan 22, 2011
    Good post Geordie and you are so right falling Ill when you are under such a lot of stress happens so much more readily than when you are on top of your game.

    Kitty I'm sure you will do what's best for you situation..

    I'm sure you will be able to negotiate the best deal for you both.

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