Am I being selfish ?

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

  1. Ballykeith

    Ballykeith Registered User

    Aug 26, 2013
    JimB - If you've not done so, go to the websites of Age UK & Carers Trust - both have plenty of advice on financial matters (eg Attendence Allowance, Carer's Allowance) as well as well as on getting help for yourself. If you'd like specific advice then contact your local Age UK (link in the website) and check the Carers Trust website for local information also. My own trust provides some free respite by means of a 'carer's prescription'. If yours does so, then you can obtain this from your own GP - certainly make sure your GP is informed that you are a carer. My own mum has been disregarded for Council Tax because of a severe mental impairment (Alzheimer's) which is a big saving. You can enquire about a form to apply for this from your local council Did anyone mention getting the Care Assessment & Carer's Assessment from the local council? It's essential to be on the system - if anything should happen to you then they need to step in. I've been issued with a card which I keep in my wallet to say that 'I'm Responsible for a Vulnerable Person'. I hope you can find a way to accustom your mum to being without you - I think you really will have to. Perhaps if you get to see a social worker for the Carer's Assessment, they will be able to advise you on the way ahead.
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi JimB
    So pleased we didn't scare you away:)
    I have days when I don't visit TP - just visit when I have a question or feeling curious or for some company or need cheering up - it's brilliant.

    Ballykeith has given you some useful links
    Whether your mum has a diagnosis or not get onto the Attendance Allowance application straight away - you can send for forms and /or you can sign up and fill in online. I did both - in that I got the paper forms which gave me a good idea of the detail they want, used those to draft out all my comments and then I filled in online, which was much more open so I wrote bullet points and used up every inch of space
    Remember to think of everything your mum can no longer do or needs help with ON HER WORST DAYS AND NIGHT. This is not a form to hold back on - it's hard to read back what you write as you will be faced with the stark reality - but I found that very helpful as there was no place left for denial (mine not dad's) and I could then move forward.
    You could get help from CAB or Alz Soc etc - they know exactly what phrases will get attention. I did it on my own and was just brutally honest and very detailed.
    From what you write you should be applying for full rate ie day and night. And make it very clear that you have been providing a high level of support for many months (years?).
    Get the Carer's Allowance forms too and fill them in in parallel so they are ready as soon as AA is granted - but this is only payable if you earn less than £115 a week (I think that's the current amount).
    If you have a diagnosis you can contact your council now and ask for any forms to fill in regarding Council Tax rebate (prob 25%) - it may be possible to back date so make sure you tell them the date of diagnosis.
    Also contact your local Social Services - ask for a Needs Assessment for your mum and a Carer's Assessment for you. Depending on your mother's (not your) financial situation she may be self funding so you could organise care yourself, now - but the initial assessment will hopefully suggest links to care ie daily care in your home, sitters, a day care centre etc.
    My council have a booklet with all these details in, and lots of info on their website.
    If you don't yet have a diagnosis - do all this anyway - but also contact your mum's GP. I guess they will have to do a home visit. Write up all your concerns and send to the GP so s/he know what you want investigated and why a home visit is necessary as your mum won't go out. Then she should be referred to the Memory Clinic.
    Do you have Financial LPA and Health and Welfare LPA? If not, get these done pronto. Your mum can have these done as long as she has capacity to understand at the moment of signing.
    It's a lot to do, but if you work from home you're prob used to organising such stuff for work anyway.
    There's loads of info on the various threads, so have a good trawl through.
    I introduced a cleaner first to help dad - that wasn't too threatening for him, and he got used to having someone else in the house; they had a nice chat too so he actually enjoyed the company.

    And post a photo of the car sat on your driveway!
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    Hi Jim
    No way are you being selfish but it is possible you are risking burning yourself out!!!
    First of all - the car I agree with everyone, you should go for it!! You most certainly deserve it and it would bring you pleasure.
    Secondly, my ma also resisted outside help for a long time and in the end i realised that if we wanted to keep her at home (and we did because she did) then I was going to have to put my foot down and have some breaks in care. I did, I was really firm and blunt and said that I needed to have some time and that it would give her the chance to see other people and the alternative would be that she wouldn't be able to live at home because I wouldn't be able to cope! She still resisted but I stood firm and you can get a carers assessment and carers breaks free (i think that still applies in all counties) Someone will come and sit with your mum for a few hours a week - we were given 6 hours to use as we wanted to (others have had a lot more than that but if you don't ask you don't get). She will settle, she knows you will be coming back and that it is the only way you can manage.

    Thinking of you
  4. AnneED

    AnneED Registered User

    Feb 19, 2012
    East Yorkshire UK
    Hi Jim,

    See the GP. A friend of mine's mum has not got dementia but was having similar problems. Jill was going mad as mum would hardly let her out of her sight and thought all kinds of things were happening. The GP gave medication for the panic and anxiety and short term carers called on reluctant mum so Jill had odd hours of freedom. Mum is improved and more comfortable now and there are carers each day. Jill has got some of her life back and even went away recently.

    Carers are not impossible to get in, however much they are not wanted by the recipient. My mum (with dementia) accepted her carers as 'cleaners' as she couldn't manage her housework any more. The right carer for the right job in the right 'guise' will work though it may take a bit of time.

    Good Luck.
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    #25 fizzie, Oct 1, 2015
    Last edited: Oct 1, 2015
  6. Bambini

    Bambini Registered User

    Sep 8, 2014
    Me again, and yes your posts and replies have helped me enormously too. I managed to get mum to Doctors - he has put her on Mitazapine - early days but the last 4 days have been bliss - so much more relaxed, no arguments - long may it continue. Certainly worth going to GP to see what he can do. Keep looking after yourself, hugs x
  7. Eddy

    Eddy Registered User

    Jan 15, 2013
    No you'r not!I'am in the same situation.-

  8. mousehold

    mousehold Registered User

    Mar 25, 2015
    Jim - You have so many responses because we have all been there! I would just agree with everyone you need help (or a 'cleaner') - then you get some time to yourself or you will drive yourself mad with the feeling of being responsible for everything. You are a lovely son I must say.
  9. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Hi Eddy. Welcome to TP :)
  10. little shettie

    little shettie Registered User

    Nov 10, 2009
    JimB. I take my hat off to you for being so caring and selfless. I can only echo what others have said and also say that my mum was very similar in that she refused all help point blank, from carers to cleaners, you name it. In the end I just went ahead and organised them all and I'm not saying there weren't issues but now my mum accepts the help, has a carer she really likes and I can also get a private sitter to give me a much needed break. Get mum diagnosed, get some help for her and most importantly YOU. Wishing you all the luck in the world xx
  11. Night-owl

    Night-owl Registered User

    Feb 10, 2011
    S. Lincs
    Not at all selfish

    Hullo Jim,
    My heart ached for you, and also for your Mum as I doubt, in her heart of hearts, she would want you to make yourself ill. I agree with everything that's been said, so won't repeat the terrific ideas here. Would your mother tolerate visitors? If medication helped her to be calmer, a visitor of your choice that you could watch a film with or have a sing song with or a game of dominoes etc would make home life more enjoyable for you, and possibly for her too. If you feel the house isn't up to it, or your caring role has meant you have no friends at the moment, then cleaners, and Age uk might solve those problems. The most important thing is getting support for yourself now. It will take time and a lot of head scratching, but well worth it. Make sure you keep copies of every document you fill in or are given by officials, as they might well get lost by the agencies concerned. In a few months, you may well find that you can start to enjoy a new relationship with your mother based solely on love and friendship rather the duty.
    My very best wishes to you,
  12. Shirleyanne

    Shirleyanne Registered User

    Feb 2, 2015
    Your mother gave you life. Don't let her take it away from you. You need help. Get some. My husband wants me with him 24/7. That would be bad for me. He tolerates my absence better if he thinks it is related to my health. It's amazing how many health-related appointments I have! Do whatever it takes to get a life for yourself. It is her illness that is making your mum so selfish. Confrontation is no good. You need to work round the patient in ever-increasing circles. Good luck!
  13. Earthangel

    Earthangel Registered User

    Feb 8, 2014
    South Yorkshire
    Am I being selfish?

    Hi, I am 47 years old and my mother is 81 years old. My father died of cancer last year and during this time, we realized mum didn't seem right. Mainly, forgetting names and logical thinking became unloving towards my dad, which wasn't like mum. They had been married 57 years in a loving marriage, I am a only child. Anyway, through this hell of a journey, I have realised one thing, we as the carer, are just as important as the Dementia sufferer. I am married, but I have no children. My mother thinks I should be with her 24/7 and my husband thinks I spend too much time with my mum. I have been through hell with guilt, I wanted and thought I should be there for mum and I promised dad I would look after her. Everyone tells me I spend too much time with mum, but there is no one else. Everyone tells me that my husband should come first, but how can I be in two places at one. Everyone tells me, my health will deteriorate and I could have a heart attack or depression and end up in hospital if I don't back off. Everyone asks me who will look after my mum if I die? Well I hope I ain't going anywhere yet, but it makes you think! So go and buy that car, enjoy driving it and cleaning it and whatever men do with cars...... Then tell your mum she is going to have a befriender (Sue Ryder in Doncaster). This will be enjoyable, a female to talk to. Then she will get use to someone coming into the house, then arrange for carers, they won't be here all the time, but it will give you a bit of a rest. My mum lives on her own, and she tends to think she has nothing wrong with her, but I could write a book. She is evil towards me if I mention Dementia and a few weeks ago, when she took her weekend tablets on the Friday night, after I left her, she ended up in hospital and I wanted her to have carers in a morning and night to give her, her tablets - but she refused, and I backed down. But next time she has no choice. It is hard, but my life is just as important as mums, so is yours... xx
  14. Lizziedalia

    Lizziedalia Registered User

    May 25, 2011
    Greater London
    :) Good evening JimB: well it seems that there is a strong bond between you and your Mum. When I read all you have written, I can see my Mum facing me. We have also a strong bond, and because of it, she would like to have me alone for her alone. She is as dependent as your mum is. But I have a life and you have or must have yours, like anyone else. When I observe my mum, I can see 3 persons in 1: the elderly "standard" person, the Alzheimer person and a third one, the "secret" person, the one that I may never know but who shines at times in a different way. I have been for a long time in between two moods : "sacrifice" myself for my mum or doing my best to contribute care for her well being and still having my life. I finally went for the second option after lots of reading, seeking advice among friends and family and thinking. So don't ask your Mum when you need to improve your life since it will not affect her well being, eg buy your new car. You are the one to drive it. For your everyday life and your mum's comfort, you should set up routines - before breaking down - with professional carers, a nurse coming in to give her medicine, friends and family help if possible. When you take some distance to have your own life, you will still be able to help her and you will help her better because you will keep your own energy and strength. Hope this is not too selfish for you or anyone else. All the best, Lizzie-:rolleyes:
  15. cazened

    cazened Registered User

    Jan 31, 2012
    Hi Jim, I dont think you are selfish at all and would kindly remind you that you only get one life and it is so obvious that you love your Mum so much but i would really insist you get some help so that you can have some quality of life.
    I had the same problem with my Dad (93) but after i burnt myself out i had no alternative but to get help and now 2 years on he is happier and so am i.
    Its a horrible situation to be in i know but you have to be kind to yourself. best wishes to you and your mum.
  16. Astitcher1950

    Astitcher1950 Registered User

    Jun 19, 2015
    Oh, this is like reading about myself a few months ago (apart from the beautiful car!). I care for my Dad who is 93. He didn't want to have anyone else around but as I could no longer manage him physically (poor mobility and he is much bigger than myself), I bit the bullet and went for the social services assessment.
    To cut a long story short, we now have wonderful carers coming along three times a day to help with personal care. However, the way I got my Dad to accept it was to be involved whilst they are here. This usually takes the form of me chatting about general things and remembering times gone by whilst the carers get on with everything. They are happy to join in and they find out more about Dad too. He still can't remember their names but he is happy with them.
    As far as getting out, I again bit the bullet, and got in some more carer time. Now I have five hours every Thursday to use as I want. I don't always go out but can do things around the house and garden without having that constant call.
    I am so glad that I have taken these steps. I feel that I am more in control and that I can have some time to do something for me. I have had to harden my heart a little but I know it is for the best.
    So go for the car and 'bite the bullet' and get some time for yourself.
  17. pleb

    pleb Registered User

    Sep 28, 2015
    l totally agree with what you say :)
  18. Paulette395

    Paulette395 Registered User

    Jan 18, 2014
    You are brainwashed

    Little by little you have been taken over until there is so little of yourself remaining. You have lots of advice here-mostly saying the same things. Do it. You have been brave enough to ask-now take the advice. Your mum loved you once and was unselfish, but as she has aged she has become self-centred. She does not realise it. It is now time for you to do what is best for her. You have to make the décisions. You tell her what will happen-just like she did when you were not capable of looking after yourself. You are now the responsible adult. Get ALL THE HELP GOING. Be firm and decisive. Look to her bodily needs. you are the one with emotional needs now. GET OUT love her but leave her to others more and more. It is not cruel or selfish-it is necessary for your survival and so that you do not end up hating your mum. Enjoy her last years but enjoy your life too. Go for a blast in the new car. Don't think of her AT ALL whilst you are out. Give yourself permission to be happy.
  19. JimB

    JimB Registered User

    Jun 29, 2015
    Once again I am overwhelmed with the support of the latest posts - thank you all so much and every one of them is gratefully received.

    Bambini - your post made my day to hear that the replies have helped you too. Good luck and I hope that the medication for your mum continues to give you some life back.

    Armed with all of this information and support I realise how I need to change the situation for the better for both of us.
    Apologies for not thanking you earlier but the last four days have been a bit traumatic.
    Mum had a slight fall on Friday after going out in the car (the old one still at present -new one in the wings) for the first time since January. I was assisting her over the threshold of the kitchen door when her legs crumbled and she slowly sank down into a praying position with me trying to hold her from behind. Her knees were on the hard kitchen floor and her head rested on the padded seat of the wheelchair. I dialled 999 but they were so busy. After two hours, and several phone calls, my neighbour came home from work and the two of us got mum back in the wheelchair and then to her riser/recliner. The ambulance team eventually turned up another two hours later and checked her over and all seemed okay although it took me until nearly 4.30am to get her to sleep.
    We had to have medical help out twice on Saturday when she could not get out of her chair to go to the toilet. This had alerted the authorities and the local crisis support team were brilliant on Sunday getting a hospital air bed delivered in the afternoon and mum equipped with an emergency button around her neck. Her mobility was getting worse on Monday morning and she was in apin with her right knee. I got the ambulance in and they admitted her to hospital and I spent the day with her ensuring that all the paperwork had the same details as mum was very confused with the UTI also coming back again. Luckily the x-rays showed that there was no fracture of the hip and her knee was badly bruised. They are keeping her in until the UTI has been cleared and her mobility improved. It has also been quite useful that she has been verbally and physically aggressive towards me in front of the nurses (apparently she was a bit verbal towards the sister as well !). They wanted to know if this was normal as they were ignoring it because of the UTI. I mentioned her previous behaviour so the memory clinic are going to see her hopefully tomorrow. The crisis support team are also getting carers and a district nurse set up while Friday's meeting with the care assessment can go ahead without mum being here which in some ways is very useful.
    So perhaps at the end of the day this might work out well for both of us as it might mean that mum might get a bit more mobile while she will have other women in the house to talk to which ultimately I think will benefit her.
    It also meant I slept in a proper bed in my bedroom last night for the first time in a year !. I am installing a bell for mum to ring me if she needs me at night so I can continue to sleep upstairs. It may mean having to sleep on the floor when she first comes back depending upon her needs but the bed pulls up on both sides so she cannot fall out.At last I can see things slowly falling into place. Thanks again for all your hard work and kind words.
    Take care all of you and I hope that the posts have helped others,
    Jim xx
  20. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Im so glad that you are getting some help :)
    Sometimes it takes a crisis to start things going

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