Tired of running someone else's life

Discussion in 'I care for a person with dementia' started by Wildlife, Feb 22, 2015.

  1. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    Not posted anything for a while, but weekends always get me down, so sorry in advance because this is going to sound very selfish, but I just wish someone could tell me how much longer I'm going to be running Mum's life as well as my own. She's 91, been living with us for over 4 years, but I've really been caring for her since my Dad died in 2000 and, looking back, I think her Az started soon after that. Logically, I know that no-one can tell me how long - not actually expecting anyone to have an answer, but I guess I'm really asking if anyone else feels the same way?
     
  2. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    Hi Wildlife

    Yes, I sympathize and empathize. I try and help a friend, have done since about 2000 too, thinking for someone else (often she says, you think for me:() is pretty difficult with my own EO symptoms it hard enough to think and do things for myself.

    Does anyone share the load with you?

    Best wishes
    Sue:)
     
  3. Sweet

    Sweet Registered User

    Jun 16, 2014
    72
    Hi wildlife
    I understand what you're saying. My mum was 3.5 yrs with dementia.. Felt so intense coping with it, my whole life was wrapped up with it..i had lots of mixed negative emotions... and that was the question I always asked myself..if only I knew how long.. Then suddenly a chest infection and she passed away in a week after Xmas, aged 92... Relief but now a different set of emotions, peace for her, but a longing to see her from me!..yours is a long time but you will get peace
    X
     
  4. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    51
    Yes, yes, yes! I have no advice or solutions for you but completely sympathise with how you feel. Sometimes it's as if you spend your whole life caring for people other than yourself..........................

    It's hard at weekends when everyone else is off having fun. And we all have our off days, I myself just posted a thread with the title 'I need to vent': which pretty much says it all!

    I get a lot from support on here - and increasingly turn for TP rather than Facebook as I find it doesn't frustrate me by reading about other people either moaning about rubbish or off having the fun I wish I was having - then moaning about it!

    Just keep swimming.........;)
     
  5. opaline

    opaline Registered User

    Nov 13, 2014
    182
    I, too, sympathise and empathise, a friend's mum was diagnosed with terminal lung cancer two weeks ago and I was thinking . . . at least you know the end is in sight. I know it sounds terrible, mum's only 79 but there's no way I can go on like this for maybe another 5 - 10 years, I'll be in jail for murder . . .
     
  6. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,854
    Suffolk
    I feel like you, Opaline. And if I was in jail, I'd never have to make another decision, ever.
     
  7. Margaret79

    Margaret79 Registered User

    Oh yes Wildlife.

    After 5 years of looking after MIL, 4 years of her living with us I am getting to the end of my tether too. Although I guess in a way I'm lucky as it's not my Mum so I can get away for a few days and leave her to my Husband.

    But, having to put someone else first all the time and not be able to go out together is taking it's toll on our relationship.

    Other thing is that I don't know what we'll do afterwards as we'll have to earn money somehow and we've moved to an area of high unemployment so that we could afford property to accommodate MIL. You're not the only one, fed up here too!
     
  8. Wildlife

    Wildlife Registered User

    Jun 19, 2012
    49
    Sheffield
    Thanks to all for your replies. It's so good to know I'm not the only one - TP is brilliant for that. I get a few hours off tomorrow when Mum goes to the day centre (and I can tackle the DWP about them having suspended my Carers Allowance, but that's another story...).
     
  9. JayGun

    JayGun Registered User

    Jun 24, 2013
    298
    I definitely feel like this. MIL doesn't live with us, but some days it's quite far into the evening before I do anything for me. And I don't mean having some "me time" and watching tv or something, I mean doing MY laundry, or MY cleaning, MY shopping or MY bill paying and life admin.

    I need to see a doctor about something, and I've lost weight so I really ought to go and get fitted for new bras - but lord knows when either of those can happen. *ties up bras with safety pins and hopes nothing breaks loose in the supermarket again* :D

    We've been doing this for about four or five years now, and we expect to be doing it for about another ten, with things getting gradually worse and worse - by which time one or both of us will probably need looking after ourselves. It's hard to be perky about that really isn't it? :eek: I can't claim that I try to be cheerful about it. I'm just in an "if not me then who?" situation. and I get on with it mostly.
     
  10. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    51
    Jay Gun, you're a mind reader. I had a house fire last month that I have no idea how or when I'll get round to sorting it. And I'm still wearing maternity clothes even though my 'baby' is four!
    Thank goodness for TP so we don't have to pretend everything's ok.
     
  11. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,161
    Me, too. It's the fact that you don't know how long your own life is on hold coupled with the fact you get no thanks, just paranoia and dissatisfaction, while your own income plummets due to all the time you're spending on your relative and your own relationships suffer due to the double strain. I'm consciously steeling myself to 'de-prioritise' my father this year, seeing as he's now safe and cared-for. But it's easier said than done. When you get a call saying he's in ICU, you get on the next plane (in my case) despite the fact you need to earn some money. :(
     
  12. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    Ditto!

    The not knowing for how long this will go on for, the not being able to make plans without accepting that they are constantly subject to change due to the care needs, 'free' time predominantly spent playing catch up either with housework I can't do when Mil is around or sorting out appointments/paperwork for her. Lost contact with a lot of friends I used to see regularly either because they can't handle Mil, or I havent the time (or energy) to meet up with them like I used to. I'm missing out on work opportunities because I can't go to all the 'networking' (and fun) events I used to go to. OH and I share the same birthday which is coming up soon - we can't go out for a meal to celebrate together in the evening because we can't leave her, and she is such hard work to take out that a 'family meal out' with her and our daughter would be far more stress and hard work than it would be any sort of pleasure or celebration. Even making any sort of a fuss at home would be fairly pointless as she tends to react badly to anyone else getting attention. So Hubby hasn't even bothered booking the day off work, and will do a 12 hour shift on the day and it will simply be another 'groundhog' day for me too.

    I still have vouchers for a manicure and hair salon appointment that I got for Christmas that I havent used - I keep saying I'm going to go and enjoy an afternoon of pampering, but whenever I think i have time, there is always something else associated with caring for Mil that seems to take precedence.
     
  13. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,161
    #13 RedLou, Feb 23, 2015
    Last edited: Feb 23, 2015
    I think there is a background worry for a lot of us caring for parents and in-laws. We none of us know what time we have on this earth, so what happens if I make my father the priority for xx years and then my neglected husband gets cancer or goes under a bus or something? - I won't have spent time with him which I should have savoured. I'm losing income and can't afford the holidays I wanted to spend with my husband now our daughter is finally off our hands. What happens if I get ill through the stress? How will my husband and daughter feel about that? Because of my husband's job we have a lot of friends and acquaintances with early onset dementia, who have a lot of insight into their illness. They all say to us, 'Live now.'
    To be perfectly honest, I think it's us carers on TP who help each other and no one else at all cares much about our predicament. I don't even feel we are the priority of the Alzheimer's Society, as they always (by definition) will think of the sufferer first. Some of their chirpy advice - 'Your loved-one wants to binge on unhealthy sweet food? Try a little chopped fruit' - just makes me want to combust. Yeah, great. And then have someone abusing you because all they want is a manufactured cake and to hell with the transfats which clogged their veins over the decades and led to the Vas. Dem. in the first place. We're the bottom of the pile on all the priority lists. No one gives a damn as long as we keep on keeping on. Is it wrong that we should sometimes think of prioritising not even ourselves but our partners and children?
     
  14. Brightly

    Brightly Registered User

    Feb 19, 2015
    3
    Hi Wildlife
    Yes, I also have very similar feelings. My mother has just had her 94th birthday and physically is going strong. On my bad days I think she'll last forever and dread that she'll be with us for years and years, with cards from the Queen lining up on the mantelpiece.

    I really hope it will be a relief when she does die, and that at least I'll have the consolation that I did my best for her, albeit sometimes grudgingly. I feel as though I've already done a lot of my grieving for her as she has sunk into herself and become more and more withdrawn and silent. Day to day it's very frustrating feeling so tied down but like everyone else I just keep going. I don't think I could do it without my husband's support though.
     
  15. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    Just had a naughty thought, if we and those we cared for ended up in prison, we'd have a great time! Just think how our human rights would be catered for! No-one would get lost because security would be so good. Food and drink would be provided and we would get to see other people regularly! :D Let's all go to prison and put prisoners in some of the more questionable 'care homes' :D:D:D is that very bad of me? :confused:
     
  16. opaline

    opaline Registered User

    Nov 13, 2014
    182
    Lol, Adcat, xx
     
  17. Meanie

    Meanie Registered User

    Jan 5, 2015
    7
    I think most of us feel much the same if its not our partner. Me an my hubby with no help from family look after 1 with vascular dementia and aside running him we have to run his household he is blind deaf and has vascular, his wife is easier as she is in a lovely care home, still needs running and finance sorting etc. My mum who has not got az or vascular, but is blind a bit deaf and very wobbly on her legs and has got forgetfulness of a 91 year old, so we are running her affairs too. You should see me 3 sets of files as well as our own household stuff.

    When we are set free which is not very often as there is something ever day, doctors dentists shopping finances repairs well you know on and on. We tend to act really strange if we get away for a night or a weekend. Drink to much and take risks and behave like people who have been locked up for a long time. It is really weird, its like make the most of time out. My dad died when he was 65 too young but I think of him fondly and have no resentment , these 3 make me feel trapped and resentful, I would like nice memories when they are gone, but unfortunately I may only feel relief and freedom, thats when I get over the constant planning in my head, you have to plan ahead all the time, I sometimes think my head will burst, I also have to look aftermyself too as I do have MS. Thanks for the opportunity to have a rant.
     
  18. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    51
    All praise be to TP. Thank goodness we can let it all out on here.

    I'm lucky I've got my wonderful son, but I would have loved another and it's just not possible as I already struggle to give him the attention he needs (writes she on her laptop while said child is playing dinosaurs on the carpet next to her).

    I spent my teens and early twenties caring for mum, and so far I've spent my thirties caring for my dad. If I didn't have a couple of years in between (when I met my husband and got married) I wouldn't know what I was missing out on I suppose.................

    It helps to hear all your stories to know you're not alone. I feel for each of you.
     
  19. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    51
    PS on a lighter note - prison sounds good! I hear you get sky movies and everything :)
     
  20. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,668
    Salford
    I have a habit of dropping the soap in the shower so it'll take more than sky TV to convince me BB:)
    K
     

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