Am I being selfish ?

Discussion in 'I care for a person with dementia' started by JimB, Sep 26, 2015.

  1. JimB

    JimB Registered User

    Jun 29, 2015
    16
    Hi,
    I am caring for my 86 year old mum who has been showing increasing signs of dementia during this year. As per my previous post, I cover all of the caring as she also has poor mobility (e.g needs assistance to get out of her riser/recliner chair and to be able to walk to a commode as the toilet is too far for her) and eyesight.
    I am in the house virtually 24/7 apart from the occasional trip down the road to my village post office and the shop. I was collecting my mum's monthly supply of atenolol tablets (blood pressure) at the chemists at the start of the year but she has such anxiety attacks at being left on her own that I now have to get a neighbour to collect them on my behalf. She refuses external help, including anyone from the medical profession, and does not like the idea of my neighbour sitting in while I go out to get any essential shopping. Therefore I buy the majority on the internet and anything else has to be put to one side for another day.
    A friend of mine who runs a garage knows about my love of cars and has contacted me to let me know that he has got a car for sale which I had always mentioned in the past to him that I would like to own. My mum always enjoyed being involved in my car sales in the past and got very upset when I mentioned I would like to change my car again. Unfortunately this year she has been house-bound as she cannot get down the steps either at the front or back of the house. I purchased a portable ramp but this did not work as she hated it when she got outside as well as the fact that the depth of steps meant that the ramp was steeper than intended, as it otherwise extended to the wall a the edge of the patio, and was very difficult to push her back indoors in the wheelchair safely.
    Am I being selfish in wanting to change the car at present as I feel guilty about upsetting her. She hates me going anywhere, as previously mentioned. I stay at home and only take long weekends for holidays without going out so that I might be able to venture into the garden for a short time (I have postponed my opticians, do not go to a dentist etc). Therefore to be able to go out and clean and polish the car of my dreams would give me an outlet even if driving it would be only occasionally. The problem is that it would mean at least a couple of trips to the garage to complete the deal which would be two major obstacles as I know my mum will have problems with this. Sorry for another long thread but I have no-one else to talk to over this.
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,397
    Yorkshire
    Oooooh JimB - a warm welcome to TP.

    From reading your 2 posts you very much need us. You'll find lots of information and support here - lots of lovely people with wise words and a sense of humour, and strong opinions which you can take or leave but which always offer food for thought.

    So - here's my response - and it's just my opinion!

    You are in no way being selfish!!!
    You are in fact being so selfless that your self is likely to disappear!!

    Yes, you should get the car that you so richly deserve - go DO IT.

    But that isn't really what this is all about -
    whether your mother says she wants help or not YOU NEED HELP.

    You are in an intolerable position. Yes you are still working - but where is the rest of your life?

    Personally, I think it's time to bite the bullet, get a needs assessment for your mother and a carer's assessment for yourself and get in some carers to support YOU.

    I know what I suggest will cause ructions, but, for one thing, it's your house (you say she lives with you) so you have a right to have other people come in it to help you care for her. Tell her that. And for another you have a right to a full life of your own.

    I sincerely hope you have in place Attendance Allowance, Carer's Allowance (if appropriate) and a reduction on your Council Tax.

    If you don't work through her reactions now you are heading for breakdown yourself - and then where will she be?

    And I won't say sorry for being so blunt - you can ignore everything I've written
    except

    Go buy the car!!

    (then you won't be able to resist taking it for a spin several times and will have to deal with the rest ...... see my cunning plan!)
     
  3. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    Not at all. In fact this post is one of the most UNselfish and self-sacrificing things I have ever read, but you cannot do this all alone and it's not fair to expect you to.

    If your mother can't get out of the house at all is it really necessary to tell her you are changing your car?

    But apart from all that, it seems you are letting your mother totally control your life. Obviously as carers we have to do everything we can to keep our loved ones calm, secure and safe, but I feel very strongly that this should NOT be at the expense of our total life.

    Realistically I could be in my 50s by the time this is all 'over' :( and I am fearful that I will find myself without any kind of a life to go back to, so I try to keep a balance as much as possible. You have allowed your mum to call the shots and now find yourself in a situation where you have no quality of life at all. You need help and you have to stand up to her, hard as it may be, and do it now.

    We all deserve a life, Jim. Don't totally sacrifice yours.

    Trying phoning Age UK first off, I have found my local one to be incredibly helpful. And loads of people here can guide you re getting assistance (I am not quite where you are - yet - but when I am I will get help too.


    AND PLEASE - ENJOY YOUR CAR!!!!
     
  4. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    ^^^^ Yes! This! ^^^^

    And all the rest of Shedrech's post too, loads better than mine! :eek:
     
  5. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    I would echo everything Shedrech has said. You are absolutely NOT being selfish. A very sad aspect of dementia is that people often lose the ability to consider anyone's needs or wishes but their own. If they did not have dementia we would call it being very selfish and demanding. So you have to think of yourself and your own life, because your mother can no longer do so.

    Personally I would not discuss it with her before at all, and would avoid getting into arguments about it afterwards, or trying to justify it. From experience, such conversations are pointless and just get everybody worked up and stressed for nothing.

    Enjoy your new car! 'O rapture, O bliss, poop poop!' - if I may quote Mr Toad!
     
  6. Tara62

    Tara62 Registered User

    I totally agree. It's wonderful that you care so much for your mum, Jim, but you have allowed her needs to absorb your entire life, and you really will disappear if you don't take back some time and space for yourself. Quite apart from anything else, it's not good for your health to be in the house 24/7 - you're not getting enough light or fresh air or exercise, and it will eventually make you weak and ill.

    Your poor mum obviously has not thought or cannot think about what your life is like and what your needs are. I am absolutely certain that when she was younger, your mum wouldn't have wanted you to live like this - in fact, she would have been horrified.
     
  7. Lawson58

    Lawson58 Registered User

    You need more than a new car Jim. You seriously need a break and I think your mum needs a 'holiday' in a lovely care home for a couple of weeks. You are going to go under if you keep on going as you are now and that is something you don't need.

    I wish you strength.
     
  8. meme

    meme Registered User

    Aug 29, 2011
    1,955
    Female
    London
    new car ...then make a list of what you need and want...work your way through it..x
     
  9. susy

    susy Registered User

    Jul 29, 2013
    806
    North East
    Selfish, no way. No where near!!

    I insist you buy this car. It is the car of your dreams..... You are allowed to have something for you in your life.

    Does mum need to know? Will she see the new car? If not, then have this as your secret guilty pleasure and enjoy it. Life is hard enough xx
     
  10. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,161
    I so agree with these posters:

    'You are in fact being so selfless that your self is likely to disappear!!'

    And:

    'new car ...then make a list of what you need and want...work your way through it..x'


    You do have the right to a life. Don't forget it. Dementia will try to take over you as well as her. Would your mother have been so selfish herself before dementia struck? Would she have wanted you to live like a hermit?
     
  11. Pear trees

    Pear trees Registered User

    Jan 25, 2015
    442
    No you are not being selfish at all, and you need to have an interest. You are doing a great job for your mum and deserve a bit of me time
    But as others have said you need to accept that you will need more help in the future, and it is easier to do gradually now when your mum has time to adjust to it.
     
  12. ellejay

    ellejay Registered User

    Jan 28, 2011
    4,013
    Essex

    My sister did that and more in the quest to keep mum happy. By the time sis was diagnosed it was too far advanced for treatment. My sister has been gone for 13 years, mum is still going strong.

    Sorry if this sounds a bit blunt , but, please, think of yourself once in a while.

    Lin x
     
  13. canary

    canary Registered User

    Feb 25, 2014
    9,313
    Female
    South coast
    You are indeed a completely unselfish carer and need to grab this opportunity with both hands.
    Sadly, people with dementia hate change because anything different takes mental processing and it is hard for them, but you cant just put your life on hold all the time. Introduce small changes like getting carers in to help you not her ;) so that she gets used to them and then it will be easier to pop out for a while. And you really dont need to tell her in advance - much less ask her.

    But start with the car :D
     
  14. Slugsta

    Slugsta Registered User

    Hi and welcome to TP :)

    No, you are not being selfish, far from it! You need to look after yourself - not just so that you can be there for your mum but also because you are a valid person in your own right. You have your own wants and needs and they are no less important than your mums.

    Please don't neglect your own health, physical or mental. I'm sure your mum wouldn't have wanted this when she was well. That's what she is, ill, and you both need help with this as with any other illness.
     
  15. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,397
    Yorkshire
    Well, JimB - I kinda warned you - we are a vociferous lot

    I hope we haven't overwhelmed you

    first posts don't often get this landslide of responses
    which shows how concerned we all are for you and your mother

    Please do come back at us
    we're not meaning to shout at you

    you're an amazing son and your mum is more than lucky to have you care for her so much
     
  16. Bambini

    Bambini Registered User

    Sep 8, 2014
    32
    JimB, your post described my situation exactly so I know I am the last one to give advice but you have to look after yourself. Get the car, drive the car, you're not being selfish, it's just living. We only get this chance once, don't be like me and feel you are watching the world through double glazing.....can see it but can't touch it. Really hope you have the strength to do what is right for you and get the balance right X


    Sent from my iPhone using Talking Point
     
  17. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    As I read down the posts this is what I was thinking.Unfortunately you seem to be allowing your mum to control your life. You need to take back the control and live your life. That doesn't mean neglecting her needs ,and it sounds like she will not be at all happy but that is the way it needs to be. Yes to the car too. Good luck.
     
  18. SarahL

    SarahL Registered User

    Dec 1, 2012
    229
    Do live your life as much as possible. Your mental health will crumble if you do not find a balance of support and assistance. I honestly speak from experience and am traumatised by what I went through. Definitely get the car and try to get carers in, assessments for you both and please do not berate yourself in any way at all. It does not mean you love or care for your Mum any less, but it does mean that you show yourself the value you deserve.
     
  19. Ballykeith

    Ballykeith Registered User

    Aug 26, 2013
    24
    Peterborough
    After more than two years of caring for my mum for ten hours a day, seven days a week I've got to the stage where I'm really worn out by the remorselessness of it all. I finally booked mum in for a week's respite which was great, although once it was over we were back where we started. I feel it's time to move to a care home now whilst my mum can still adjust. I remember that when I brought her home from her week's respite she was so calm, so that silence spoke volumes for the benefit she received from that stay. Like you, my own life has been well nigh obliterated by my parent's dementia. Hope you can gain the resolve to recover more of your life so that in the longer run you will both benefit.
     
  20. JimB

    JimB Registered User

    Jun 29, 2015
    16
    Thank you all so much for your posts, I was completely overwhelmed by the response and really appreciate your comments and kind words :) .

    Shedrech - Thank you for taking the time to post the initial full reply. Your comments have hit home and made me start to realise that additional help is needed. I want my mum to be able to stay at home as long as it is physically possible so both yours and the other posters comments about lightening the load make a great deal of sense.
    In response to your comment "I sincerely hope you have in place Attendance Allowance, Carer's Allowance (if appropriate) and a reduction on your Council Tax." I have not got any of this in place at present.
    This leads me to another question please - what order do I seek help. Is it GP, then Social Services and then a Carer Agency ?. Any guidance would be much appreciated.

    ellejay - sorry to hear about your sister but if it is any consolation your words have been heeded.

    Bambini -"We only get this chance once, don't be like me and feel you are watching the world through double glazing.....can see it but can't touch it." I know that feeling very well, I hope that perhaps these posts might give you strength as well to think about your own situation.

    Ballykeith - I really feel for you in your situation. Following these posts it is giving me the thought that by requesting help could assist both of us and delay going down the same route as yourself.

    Unfortunately my mum has always been anxious at being left and this has got worse over the past two years to the point now that she hates me to go into the garden let alone further afield. This stems from when she was young and was ill once and her mum left her to pop down the road to the shop. She left her in a big window so she could watch her go down the road and come back again. You can tell the impact as she recalls this so vividly now with tears in her eyes. Therefore I need support so I can get out again for a short time without her having any further panic attacks.

    The delusions have returned again over the past couple of days and are now continuous (despite trying to change the subject and attract her attention elsewhere). Sadly they are causing her anxiety and upset as she keeps thinking people are in the house and she is being taken away at night. Reassurance has not worked and I have even made up a story about our next door neighbour has frightened them off but this has not worked as they apparently have come back again. Should I contact our GP on this in the first instance ?.

    This is a fantastic forum and your are great and kind people - this is a terrible illness which can, as has been mentioned already, easily engulf us all. Thanks again for giving me the initial strength (I now have the more difficult job of putting the words into action). I will keep in touch.
     

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