Do you feel your life is on hold?

Discussion in 'I care for a person with dementia' started by Lavender45, Mar 14, 2016.

  1. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    Does anyone else feel like they have pressed the pause button on their life?

    It has struck me that my life is in limbo and will be until the inevitable happens to mum.

    Mum is somewhere around the midstages of Alzheimers at home she is ok (kind of, there's lots of imaginings, confusion etc) but she cannot go out and about on her own.

    Mum cannot remember our address and feels no connection to our house, sadly she can get lost, she proved it last week so no chances will be taken from now on.

    It's selfish I know, but I'm wondering how long this will go on and what I'm doing to my future. I gave up full time employment to be at home with mum, I regret that decision and at the same time don't, even though that makes no sense. I did what was needed, but when this is over will I be able to find a job ( I'm in my mid 40s now), I have a company pension from my last employer, but will it be enough? Am I going to struggle because I left the job market? Have I been very stupid and sacrificed my future security?

    There are no answers I know as none of us has a crystal ball and I'm well aware how selfish I'm being when mum cannot help being ill, but does anyone else feel the they have paused their life and cannot plan for a future?

  2. RedLou

    RedLou Registered User

    Jul 30, 2014
    Lavender - you're not being selfish, first and foremost. You're trying to envisage your future and wondering the time scale. That is a natural human occupation.
    My life definitely went into limbo when I began long-distance caring for my father; my career went west; my finances/security went ***s up! -- Nine months after his death, I'm beginning to put my life back together and feel like me again. So it will come but it will also be different. I haven't been able to properly resurrect my career (ageism) but i now work part-time and am doing the OU degree I always promised myself I would do.
  3. Dustycat

    Dustycat Registered User

    Jul 14, 2014
    North East
    Oh yes. Can identify with the pause button. I'm into my 6th year with my parents. Lost my Mam 2 years ago and Dad is now in care with Alzheimers. Even though he is in care it's not easy as I am an only child. We haven't been abroad since 2011. Both my husband and I now only work part time. Fortunately we have works pensions. We won't go away unless it's within an hour or so away in case we get a call. We had a lovely night away in Leeds this weekend and am currently sat in A&E having got a call at 5.40 am this morning. Fortunately nothing serious. Feels like punishment for enjoying myself. Hang in there. Take care . xx
  4. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    I am learning to make the most of any chances to enjoy yourself in this caring business Dustycat.

    You certainly should not feel selfish Lavender, in some ways caring is the most rewarding job I ever had and in many ways it is the hardest. There have been a few times I have felt like you do.

    An OU course sounds like a great idea by the way Lou.

    Anyway, all the best to you all in a hard situation.
  5. saskia

    saskia Registered User

    Aug 10, 2015
    North Essex
    Hi Lavender

    Most def not being selfish - i battle with this daily -the constant feeling of guilt / not doing enough / doing too much.

    My mum is in early stages -at home & day to day -seems to cope ok (according to mum -she most definetly does not have memory problems!)

    i work full time and whilst in an office enviroment - i have to keep my phone on silent -i check it every hour and lo & behold - every other day is a missed call from mum '' where are my tablets / have you done this / etc etc''

    Its exhausting.

    everyone says not to have mum move in with me & to be fair to all of us -this wouldn't work as we clashed prior to any early dementia and she smokes - which i loathe & couldn't have in my house.

    i keep envisaging the future - would it be care ?/ house being sold ?/ POA etc etc and it just makes me want to curl into a ball - but i know its coming. I have a brother who does try & help -but he lives further than me & also full time.

    Giving up work is not an option due to financial reasons & if i'm honest -selfish reasons. In my early forties and i feel since my dad died 4 years ago - me & my husband have just run around after mum & have had no life.

    I face each day & await to see what happens.

    Sending you a virtual hug & you are not alone

    sas x

    ps -since typing this -have had a missed call from the village chemist where mum lives (they know she has memory issues) seems she has called in to collect her tablets which were collected last week :eek:)

  6. CynthsDaugh

    CynthsDaugh Registered User

    May 5, 2015
    Salford, Lancashire
    Hi Lavender,

    You're not selfish & I hope I'm not either! I also feel my life has been on hold since I moved Mum in with me 18 months ago. I didn't give up work due to financially not being able to, but drop Mum off at daycare and picking her up on way to and from work which is rather a role reversal. I haven't had a night out since Mum moved in, and friends have stopped asking.

    I was desperately wanting to move before Mum had her fall in June 2014, and was in the process of extending the lease on my flat to make it more saleable when the decision was made to move Mum in with me. My flat is ground floor so works well for Mum (uses walking frame/wheelchair) so we have stayed where we are. (I want to go upstairs to bed after living in flats for 20 years!). I sometimes find myself feeling a bit resentful about not being able to move, and as I am in my mid 40s the length of time and therefore amount of increased mortgage I could get is decreasing.

    But I love my Mum to pieces, and wouldn't want her not to be living with me.
  7. marionq

    marionq Registered User

    Apr 24, 2013
    Totally trapped! I am 11 years younger than my husband and still want to do things and go places but it's not going to happen. He cannot be left for ten minutes as he wanders and gets lost. I do such a good job of looking after him that he is otherwise well and will probably outlive me as I do everything inside and outside the house.

    He does now go to day care on three days so I get a little breather but this is not much of a life. However I have two weeks respite for the first time in June and this could be a breakthrough
  8. jojop

    jojop Registered User

    Nov 9, 2013
    SE London
    Hi Lavender,

    Definitely not being selfish, or anyone else that sometimes feels this way. I wonder if I will ever return to work, doubtful though I am in my late fifties. Any chance of future employment is fading, If there ever was the chance it could only be part time as I also care for my sister. It doesn't stop me thinking that maybe one day...

    Perhaps I may get the opportunity to do some volunteer work in the future.

    Many years ago, before mum got ill she would often say to me "don't give up your life to care for your sister". She would probably feel the same about my looking after her but I never gave it a second thought.
  9. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    You are NOT being selfish - you have to think of yourself as well as your mum, and I'm sure her pre-dementia self would say the same.
  10. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    Hi Lavendar
    Snap. I 'm a couple of years older and gave up my job a couple of years ago to car for Dad who is 90ish. You can't help wonder what the future holds. Personally I didn't like the job I was doing anyway so have never missed it in the least and I do have a part time job so still feel useful and involved in society. Don't worry about not being employable later on, you may need to do something else and learn how to re market yourself but there will be something. Think of it as a pause for thought- what do you want ot do when circumstances inevitably change one day? Not sure I can answer that one.
    I have pension concerns as well but at least there is something in the pot, although I suppose we aren't much more than half way through our working lives given how the pension age keeps increasing.
    Try and enjoy having some quality time at home with family, and get some of those jobs done that you never get round to with full time work. I am partly talking to myself here I think.
  11. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    I'm 17yrs younger, yes life on hold.
  12. hells-bells

    hells-bells Registered User

    Nov 16, 2015
    No, you're definitely not alone in this, and it's certainly not selfish to think about your own future.

    I'm in my mid-30s and before my MIL was diagnosed with early-onset, we were making plans to start a family - that's now on hold indefinitely, as the demands of caring plus adding a baby to the equation would be too much. However I have a horrible feeling we will never get the chance to have a family of our own, as MIL may continue to live independently, with our 24/7 help, for many years, and it'll be too late.

    Do try and put yourself first sometimes though, it's so important. Get respite and take breaks, the disease shouldn't take control of your life as well as your mum's.
  13. irismary

    irismary Registered User

    Feb 7, 2015
    West Midlands
    You are not selfish and I feel the same about life being on hold. I care for oh who has AD and help to care for my mom who is 92. She is in sheltered accommodation but increasing wants more help and company which is understandable but there are only so many hours in a day. OH needs help with everything although can be left for short periods of time and is generally co-operative and happy. Still I feel exhausted and sometimes resentful as at 55 I should be enjoying some social life. I am not a natural care giver and I am often impatient. Yet I read on here of those in far worse situations and feel bad and then get scared as that is likely where things will go for OH as well and how will I cope. I feel irrelevant as a person on my own right.
  14. Stressed Out

    Stressed Out Registered User

    Aug 9, 2014
    Absolutely, I think many of us feel like that from time to time I know I do most weeks. I thought when Mum went into a Care Home life would be less stressful but silly me gave up my job and I feel more trapped than ever. I get the impression Care Homes feel someone should visit every day bit difficult when there is only one!

    What worries me most is people living longer and what quality of life have they got, it's sad/depressing to see.

    I want to enjoy what's left of mine and live a little, every visit I ask myself how much longer!

  15. nannylondon

    nannylondon Registered User

    Apr 7, 2014
    No you are not being selfish I feel exactly the same my husband is in a care home in the late stages of dementia he doesn't recognize us and is unable to do anything for himself I feel I can't make any plans I would love to go on a holiday but my life is on hold then I feel awful for thinking like this it's good to know others feel the same
  16. RedLou

    RedLou Registered User

    Jul 30, 2014
    hells bells - forgive me if I'm intruding, but my reaction to your heart-breaking quote was that you can't give up your future, your children, to your MiL - or that's how it seems to me. It's too much of a sacrifice.
  17. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    I agree with above post Hells Bells, this sounds like a decision you could regret for a very long time. I doubt your MIL would have wanted or expected this when she was well. If you are in a happy relationship it would be well worth reconsidering this IMHO
  18. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    Lavender I could have written your post, it's exactly how I feel.

    Although anxious about not being able to find work again when all this is 'over' (I could be in my mid 50s by then, Mum is 81 and her health is quite good apart from the Vascular Dementia) I have never really been career driven and am one of those people who work to live, rather than live to work.

    However, as a singleton who enjoys dating I am aware that I have a LOT less freedom now and there is the possibility that I could miss out on finding love because I am less and less available as Mum and Dad both deteriorate (Dad is 88 and has Vascular Parkinsonism).

    When we lose Dad, which I suspect will be soon, I will have to move in with Mum and she can't be left alone. That isn't a very attractive prospect for a potential partner.

    Even now when I start seeing someone new I am aware that I probably don't have an awful lot to offer. I have no money so can't pay my share if we go out for dinner, I sometimes have to cancel dates at very short notice and who is going to want me when I am unable to go out and the only way we can spend any time together is watching Birds of a Feather with an old lady who smells slightly of wee?

    I feel even more guilty because I know Mum and Dad both feel terrible that they have to depend on me so heavily. Even with her dementia Mum is always apologising for 'being a nuisance' and constantly thanks me for 'everything you do' and compared to many on here I don't actually do that much - for now.

    They were such amazing parents to us and there is no way I wouldn't step up. But I am terrified I could miss out on the chance to be happy finally. I've never had the best luck with men in the past...

    But Hell'sBells you must NOT deny yourself and your husband the chance of having a family. If I was younger and had the chance to have children with the man I loved I would make that my priority. Forever is a long time to have regrets.
  19. WORRIER123

    WORRIER123 Registered User

    Oct 1, 2015
    You aren't selfish at all I feel the same too and resent most days
    I moved back home when my mum passed away a few years back. Dad didn't have dementia then. He was only diagnosed in October 2015 and I feel trapped. He actually makes me feel guilty asking what time I will be back don't be late oh you are going out are you. He was like this before he was diagnosed now he's still doing it but I feel more guilty and do as he says
    So much I want to do in life.
  20. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    Thank you

    Thank you everyone who has said they feel similarly to me. I want to say its nice to know I'm not alone feeling this way, but its not nice, I wish none of us had to feel this way!

    Everyone if you has said something truly lovely and you've made me cry with your kindness telling me that I'm not alone worrying about the future.

    I wish I could hug everyone of you, but you all deserve huge virtual ((((hugs)))).

    Love to you all

    Lavender xxx

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