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I don't know what to do.

Discussion in 'Younger people with dementia and their carers' started by Amber_31, Jan 14, 2017.

  1. Amber_31

    Amber_31 Registered User

    Jun 29, 2016
    Daily I read ' talking point' posts, in those few hours between getting into bed and falling asleep, when I can't sleep as my mum is moving around and refusing to sleep, and, my own thoughts won't let me sleep. I love my mum to bits, and whilst she is indeed a real pain sometimes I'm nowhere near the stage where I'm needing to think about putting her in a home. But, i've just changed as a person, for the worse. I've lost all my get up and go, I can't even get up at a decent hour. I just feel like my reason for being is to cook, clean, counsel, calm down, administer meds, deal with all someone else's personal admin, organise someone else's diary on a one to one basis, all hours of the day at the expense of everything else in life. I'm an absent minded non smiling mother to my baby. And when my mum is particularly disturbing or delusional, it hurts me so badly and I find absolutely no consolidation in thinking it's her illness, not her. The heartbreaking fact is that she is very lost to the illness, but I still love and comfort her all the same. I don't see my friends anymore as it's only really my younger brother who can come and stay with my mum during the day, but he chops and changes his plans because of his own irregular work and I hate letting my friends down. I don't have any energy to exercise or anything, I just stay at home eating everything in sight and wearing the same clothes as nothing else fits.

    The only area of my life in which I have any energy or passion left (other than love for darling baby) is my absolutely earth moving fury at my elder brother, my invisible sibling. Though not walking away from my ill mum I have been plunged to the depths of despair and I've basically lost everything that made me, me, my friends, my work and identity, my earning power and my positivity. He walked away, hasn't seen my mum for a year, calls her two minutes every three months after I beg, and appears to be entirely happy whereas I'm really suffering because I'm the sole carer. Is there anything I can do to help myself?
  2. Aisling

    Aisling Registered User

    Dec 5, 2015
    Dear Amber,

    Please don't be offender by my reply. Will you please go to your GP. You have an awful lot on your plate. You may be depressed and doctor will be able to help you.

    Sending you a massive hug.

    Aisling xx
  3. Tin

    Tin Registered User

    May 18, 2014
    Amber, completely understand your slow withdrawal from normal life, its what dementia does to us. Is there no chance of finding someone to sit with your mother while you meet some friends? or could you invite a friend to your home for lunch, you may not know it, but there is probably one or two that do understand the stresses dementia can bring and are probably holding back. It is hard to find the energy to do these things, but I do because more than anything I need to keep in touch with my friends and try to talk about anything else but dementia, although when your life is all about dementia, it is hard to avoid.

    Will check back on your thread tomorrow, I am tired and now that my mum is finally asleep, think I should try and get some sleep, if I can just get some of the odd thoughts out of my head.
  4. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    Hi Amber

    As Aisling says, get yourself to see the GP, you sound overwhelmed :(

    Depending on where you are, England, Ireland, Scotland, US ... there are different types of help available to help you, your mum or both of you

    I have changed my sleep pattern to manage my mum. I am often found at midnight telling her to go to bed, it'll be 1am before she has settled, so I don't get to bed till late :eek: I used to get up relatively early, but decided that surviving on 4 or 5 hours sleep, 7 days a week, wasn't going to be possible in the long term.

    From your post, it appears your mum is restless & you are awake because of this, so getting up at a reasonable hour is not going to happen if you don't get to bed at a reasonable hour

    See if you can arrange a meds review, her GP may be able to tweak her meds to help her sleep, which will give you a chance to sleep as well

    The very first thing to do, is to look after yourself, as you can't help your mum if you are unwell

    If you keep posting, lots of experienced people will help guide you

    Take care of yourself :)u

  5. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Amber are you getting out & about with your baby? Mums & tots groups etc?
    Could you get a carer in a couple of times a week to sit with your mum so you can get out?
  6. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    I don't want to make you feel worse but I'm concerned for your baby.The atmosphere you are living in do not sound ideal for his/her well being and development.And at the end of the day the baby is your main priority.Do you live in your mum's house or does she live with you?I agree that you should see your GP as a matter of urgency.Also contact social services,tell them you are not coping,that you are caring for a vulnerable adult and that you need help.There are day day centres and care packages designed to help but you will have to be insistent,resources are stretched.Don't waste energy bring angry about your brother,you have made your choices,he has made his which is his right even though it seems so uncaring.One other thing,I think it might be time for residential care.Your mum might not be ready but I think you and your baby probably are.Don't forget that you are just as important as your mum,your baby even more so.Do take care and please,please do get help.
  7. Greycardi

    Greycardi Registered User

    Sep 26, 2015
    Dear Amber,
    well done for helping your Mum so much until now - you have been really kind and caring. when i read your post I think - that could be me in two years' time. It is a warning to me.
    I don't think you should waste your time trying to persuade the invisible brother to change. I have got those kind of people in my family and they will work very hard to protect their own interests, hiding behind their own commitments as an excuse.
    Babies are really demanding and so is your Mum. If you continue as you are, you will pay too high a price. You have to think about yourself and the life you want for your baby and for you. I would suggest sitting down and planning how to transition out of the current setup into a new arrangement which gives you and your baby some space to be yourselves. I have not had to do this part myself but I know there are a lot of TP friends who have and they will have practical ideas. Kindest regards GC.
  8. Morty

    Morty Registered User

    Dec 13, 2016
    Southeast Ireland
    Amber, your doing a great job and you indeed have to put your life on hold but dont despair,your lust for life does return its just a nasty process time and it is tough,been there for 3 years while caring for mum n dad ,thought i was losing it myself but bounced back after i got longterm care for both.Apply for homehelp if you can,and try get some me time even if its half an hour a day
  9. carrieboo

    carrieboo Registered User

    Feb 1, 2016
    herts uk
    Hello Amber

    Please make an appointment to see your GP, you sound very unhappy. My mum's dementia started when my daughter was young, though not a baby. I struggled to care for them both, plus my 2 older children, but eventually had an emotional 'event' and realised things had to change.

    These are very important years with your baby, please don't miss them. If your mum was 'well' I'm sure she would say the same.

    Try not to dwell on your brother, you're just wasting emotional energy that could be better employed elsewhere and making yourself more unhappy - don't let him do that to you. Some people are able to care and some aren't, it's just the way it is. I'm an only child so have never had the choice to be an 'inivisible' but, believe me, on very difficult days I have fantasised about it.....

    Sending lots of good wishes.
  10. Morty

    Morty Registered User

    Dec 13, 2016
    Southeast Ireland
    Forget that older brother,he will have to live with what he hasn't done thats family for you ,i ignore my brothers n sisters for the way they didnt help me
    Homehelp is good,could be only 1-2 hrs a day but gets you out of the house and go for a walk with baby etc
    Do try stop eating rubbish as this will drag your mood further down,U have to eat properly greens,fruit etc as you are literally your mums life also now
    The carers association may also be able to help which could be a few hours a week
    They wont come knocking on your door,U have to ring them ASAP
    Chin up and get on that phone carers association and nhs homehelp
  11. Morty

    Morty Registered User

    Dec 13, 2016
    Southeast Ireland
    Also i know you wont feel like communicating but there is help out there,not enough but it helps
    Phone friends who might not realise your chronic situation,they may well be able pop in for an hour here n there
    You need to be proactive and organised
    I know its hard but once to start it the gloom will lift imo
    I was seething for ages but after homehelp etc it gets better...
  12. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    hi Amber_31
    what a time of it you're having
    I'm glad you thought to post on TP as you've received lots of thoughtful and helpful responses
    do go have a chat with your own GP, it always helps to let someone know how you are feeling, and your GP may well have ways to support you
    maybe also call the AS helpline as the folk there have access to a lot of information and contact with other agencies to support carers
    I hope your mum receives Attendance Allowance as this makes you eligible for Carer's Allowance
    ok, it's just money and not much, but it gives you a means to fund some help for you eg a cleaner, a sitter for your mum whilst you go out with your daughter and friends
    and do talk with a friend or two, it's amazing, these days, how many people do have some link to someone with dementia; I've found more people than I ever expected are sympathetic and helpful
    sadly, some are not so supportive - I'm sorry your brother isn't around to help you; maybe he just has had too much in his own life to cope with and has had to distance himself - whatever his reasons, let him go; holding onto your anger will eat away at you - every time you find yourself thinking of him deliberately replace that thought with an image of your lovely baby and go gurgle at her = much better for your soul and hers (I do this myself, though my way of taking my mind off destructive thoughts is to sing a hymn to myself - we each find whatever works for us)
    on a course for carer's I went to the best piece of advice was to set a goal for yourself each week to do something positive; the trick is to make it a small and achievable and realistic goal - start with something so easy you know you will do it and so feel good about your success - eg smile at your baby and your mother 3 times each day and NOTICE that you do it; you don't need a reason to smile and you can do it even when you're feeling low, just doing it and knowing you are doing it helps, honest - then up the goal eg have 10 mins 3 times the next week where you just sit with your baby and play with her allowing no interruptions .... I know this sounds as though it will make little difference, I was amazed at how powerful it was to achieve something and praise myself and how the positive lift helped me in time to set and achieve more ambitious goals
    do keep posting; it's good to share your experiences and get it all off your chest
    best wishes
  13. Amber_31

    Amber_31 Registered User

    Jun 29, 2016
    Thank-you so much for all the positive messages and the pointers of how to make things better for myself. Even though right now I've lost all motivation and impetus to make myself feel better, the baby does deserve better. I've been blessed with the most gorgeous lovely cuddly sweet little being, who is clearly my gift from God, who at the moment seems immune to all of this.

    As useless as such sentiments are, given lots of us are in the same boat, having an ill parent who will not get better is just absolutely dreadful and a very unpleasant wake up from all the excitement of having your own life in front of you. Yes - we all knew when we were children that our parents would likely die before us- and the alternative is far worse - but being reminded daily that someone we truly, deeply love, since the day we were born, is not really of this world anymore is just truly soul destroying. That, and all the hour by hour practical problems of the illness thrown in too!

    Doesn't help that it's January either!
  14. Greycardi

    Greycardi Registered User

    Sep 26, 2015
    Dear Amber,
    Your baby sounds adorable. Wishing you lots of gorgeous baby hugs and a virtual one from me as well. Stay strong, GC
  15. Tin

    Tin Registered User

    May 18, 2014
    January is just another burden to deal with. For me it is an ongoing cold that I cannot seem to shake off and of course my mum is sniffling and coughing a lot.
  16. Amber_31

    Amber_31 Registered User

    Jun 29, 2016
    I've spent the day fantasising about going back to work, even if just part time. I'm self employed and could do a large portion working from home. I just don't know how easy it would be to find a dementia carer who is also a toddler carer! Has anyone ever heard of anyone with this sort of arrangement and has it worked? Babies and dementia don't usually go hand in hand but they do for me!

    Thank-you so much for the hugs and support. I am feeling rather more capable of getting out of my pit today, thank-you.

    I think it's outrageous that carers allowance is means tested. Totally outrageous, especially considering a full time carer could probably only muster part time work. Working as well as caring makes you even more in need of some support, but it seems there is no recognition whatsoever for those trying care and work!
  17. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Carers Allowance is not strictly speaking means tested - you can have savings and you can have other income, just not much in the way of earnings (less than £110 a week). I agree, though - its pretty derisory.

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