1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    619
    Female
    My mum moved into my home recently so I've given up work and am her full time carer with help from my partner. Everything had been going really well until tonight and I'm afraid to say I got extremely upset. Mum hasn't formerly been diagnosed as yet but all the signs of early stages of dementia are sadly there. I've totally dedicated myself to my mums care and haven't had any time out and have given up my whole life, friends activities etc. I'm happy to do that to care for my mum but sometimes its really difficult as I cant even leave her in front of the tv or with music on for even half an hour and she wants me to be with her all the time.

    My partner has to walk the dogs now and I miss doing that and I cant even go out in the garden to hang washing out or use my computer or make phone calls. Today we went out for a picnic and had a lovely time and I try to take her out most days however tonight my neighbour popped round for a chat and I was outside in the front garden chatting for 20 minutes whilst mum was inside. My partner took her some dessert and a coffee and she was watching tv. When I went back inside all hell broke lose and I was accused of neglecting her and that I shouldn't leave her and the rules were I should be with her all the time!!


    I dont know where all this came from but I was really upset and tried to reason with her but it all ended by her saying she wanted to go and live elsewhere and I'm not looking after her properly. I'm just so upset and this is the first time anything has happened like this and I'm feeling so hurt. I guess I've got more to come of this but am new to this forum and just wondered how people cope? Xx
     
  2. 100 miles

    100 miles Registered User

    Apr 16, 2015
    109
    Hello Trying my best

    I think you might guess from my name that I am somewhat remote from mum. (I may even count as an 'invisible') But I wanted to say HI! And I am not surprised you are fed up. I am not sure it is possible for one person to look after someone with dementia 24/7 and not go nuts at regular intervals.

    I am staying with my mum this weekend and she is in a very angry mode. I have caught the flack from a previous incident (not me) so everything I say or don't say is wrong. We went out for lunch and she chose where to go and what to eat and then complained bitterly about where we went and what we were eating. I cope with lots of silent curses. (running total of 10 interruptions while I am writing this) But it is easy peasy for me because I know it is only for a limited time.

    When she stays at my house I cannot leave her sight. She doesn't know where she is. Doesn't recognise my husband or her grandchildren. I am not even sure if she knows who I am ....other than the one who feeds her. Even when she goes to the loo...you can never be certain that she will find her way back to the living room or her bedroom. Maybe your mum will be less clingy when she is more familiar with her new environment. But I get the impression you need to get away and get some fresh air and peace and quiet (or a quiet drink with your husband) otherwise the arrangement will collapse before you get going.

    Suspect I don't know what I am talking about ...cos I haven't moved my mum in with me (not that she would want to move in with such a bossy cow). Hope other people are more helpful. But thought you deserved a reply tonight. :)
     
  3. Mibs

    Mibs Registered User

    May 26, 2014
    73
    Derbyshire
    Hi, welcome to TP - you've come to the right place for support and virtual hugs. My first thought was to get your Mum's GP on board - make an appt or ring/write and ask for help. There are various conditions that mimic dementia, so best to check that out.
    If she has dementia then her reaction to you is all down to the disease, and the best response is to distract her, and try not to take her comments personally. Easier said than done I know.
    If you are going to take on the role of caring for your mother, you will need support - ring the Alzheimer's Society or Age UK for details of local activities for you both.
    Also, and this might be something you don't want to hear - I would look into getting help from a carer so that you can recover something of your former life - friends, activities, even work. Sorry if that seems a bit blunt - take care and keep posting on here.
    Mx
     
  4. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    619
    Female
    Thank you both for your replies. Didn't expect anyone to read this tonight!!

    Mibs I have taken mum to doctor and she did a short test and said mum has a short term memory problem and has referred her to a memory clinic. She has thyroid problems and it seems her previous doctor had been over medicating her so her levothyroxine has been reduced from 125mg to 75mg and I realise this could take a few weeks to rectify. Mums only been here just over two months but I am determined to care for her myself. I was a former carer before so know the ropes! I definitely would be unable to go back to work but feel its a small sacrifice to put my life on hold for the rest of mums life - she's 85, in repayment for all she did bringing me up.

    100miles I do feel for you. It must be very tough for you and hurtful too.

    Hugs, live and thanks to you both for your replies xx
     
  5. Mibs

    Mibs Registered User

    May 26, 2014
    73
    Derbyshire
    Always someone here to listen - even in the wee small hours!
    Take good care of yourself
    Mx
     
  6. Tears Falling

    Tears Falling Registered User

    Jul 8, 2013
    637
    Welcome to TP.

    I expect it will take time for your mum to adjust to her new surroundings and if she was not unwell would be pleased and happy with what you are doing for her, especially as you have the advantage of being a former carer.

    A former carer who kept in touch with friends, walked the dogs, had time out on the computer and wasn't on all call 24 hours day. The people you previously worked with had the very best of you because you had other things in your life. I certainly don't mean this to sound harsh. For you to give the best you need all the other things in your life. I would suggest that you look for all the help you can get. It's early days and your mum will need others in her life to support her. A carer to help with some of the tasks, a day centre to give her different stimulation and you a break. With the best will in the world with out support your relationship with your partner may also suffer, as well as your own health. Dementia can be long haul and will get worse not better as the days progress, which I am sure you already aware of.

    Your repayment for her bringing you up is to the best that you can be in all things but especially around your mums care.

    Look after you, so you can look after her. :)
     
  7. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    My Mum also lives with me, and has done for the past 5 years. I work 4 full days. No matter how much I think I'm coping, there are days I just want to cry and cry. Yesterday was one of those days, Mum was horrible to me all day, nothing I did satisfied her, she actually got me to the point that I ended up crying in the toilet at one point. And I've always been a strong person. The sad thing is that before Alzheimer's my Mum would never had done this. Alzheimer's is a horrible disease, and sometimes for those of us who care for our Loved Ones it can be too much.
     
  8. Jimsbird

    Jimsbird Registered User

    Jun 6, 2015
    3

    Hello TMB,

    Oh! How I do sympathise with you. My mum has moved in with me and my partner but only since February. My partner is retired and I was working full time, then cut down to part time. The guilt when I was at work leaving him to be the main carer was getting too much so I have now given up work all together to be at home for her. The constant requests to go home sometimes just get too much and I end up in tears and more upset than she is. What a truly awful disease this Alzheimers is. I have only just joined this forum but I hope we can both get some support and virtual hugs from it. It really does help to "offload" by writing things down though.
     
  9. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    I am reading with tears in my eyes, I know I have this still to come with B, sometimes he does, but mater, she wants to be with me when I visit, and the best is when we disagree she says, she just won't talk.........that makes me feel guilty.
     
  10. florabunda

    florabunda Registered User

    Nov 13, 2014
    24
    I don't know how people cope with having their relatives to live with them. My mum lives nearby. I will organise care for her and see her regularly and sort out her bills, appointments etc., and have her round for Sunday lunch every week, but I could not live with her. Some weeks ago she rang me just as her carer had left, to do something that the carer could have done, and I am ashamed to say I lost it and shouted at her. All I can say is, I don't recommend shouting at your mum, but it seems to have cleared the air a bit. Mum is more reasonable with her requests now and I am able to be kinder and more helpful towards her. I know she can't help having dementia, and of course she is dependent, but there is still enough of her previous self to keep our relationship on terms of mutual trust and respect. Is it possible to remind your mum that she is an adult and surely she can manage for 20 minutes? - or am I being harsh and unrealistic?
     
  11. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    No you are not, I know I shout at my mum, but she does annoy, I try to hold my breath and count to ten, just sometimes I feel she is just cunning.
     
  12. Tara62

    Tara62 Registered User

    I know you want to do the best for your mum, Tryingmybest, but you cannot, cannot, cannot live like that for any length of time. It will make you ill. Quite apart from anything else, you have to be able to get some exercise! You can't spend all your time indoors with your mum. You need to organise some help so you can have some of your other life back. Seriously, you do.

    Good luck!
     
  13. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,973
    Suffolk
    Can only repeat what Tara has said. You cannot do it all yourself. You will only end up with Carers breakdown, and what will mum do then? You must introduce Carers or regular daycare or similar. There will be a fuss, but it will be for the good in the end. You cannot live like you are, former carer or not and what about your partner?
     
  14. CynthsDaugh

    CynthsDaugh Registered User

    May 5, 2015
    140
    Salford, Lancashire
    It's essential you get some 'me time'. Whether it's getting your Mum to somehow accept that or getting someone to sit with her for a bit, you need it. My Mum moved in with me last year, and I work full time (she goes to say care while I'm at work). When she goes for a nap or to bed early I relish the time my own, and know I couldn't cope without them. You're doing something amazing having her to live with you and giving up your job, but you need a bit of something for yourself or you won't be able to carry on doing such a good job!
     
  15. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I'm with everyone here, if you don't give yourself a break you will get carers breakdown. Yesterday between gaps of being foul to me my mum didn't stop talking, at all, constantly. It was a form of torture. If I couldn't go to work and have a break from it I don't know what I would be like.

    On a positive note though, this forum is smashing, I've learnt more here than from anywhere else, I really don't know how I would have coped without it.
     
  16. Concerned J

    Concerned J Registered User

    Jun 15, 2014
    66
    London
    My Mum still lives in the marital/family home. My Uncle(her brother) has recently moved in.
    I don't think I could have her living with me.
    We always seem to end up shouting at each other. I know she can't help it but it is so so frustrating at times
     
  17. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    51
    Florabunda, you sound pretty much like me, but I can't convince dad to have someone in for a couple of hours twice a week - I tried to explain we need a bit of time to ourselves (husband and my son) without worrying about him. How did you do it? I tried to suggest it might be nice to have someone different to talk to but all I got was 'I like the people I already talk to'.
     
  18. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    619
    Female
    #18 tryingmybest, Jun 7, 2015
    Last edited: Jun 7, 2015
    Thanks for all your replies. Just to update we had a lovely day today. My partner, best friend, mum and I went out for the afternoon and looked around 5 different gardens in the Open Gardens Scheme and also watched a band on the green and all really enjoyed it especially mum. Feeling a lot better about what happened yesterday. I regularly take mum out to different places and that does me good as well as her. I really would not want to get a carer in. I dont see the point as I can easily cope with it all myself. It was my partners idea to have mum come and live with us so he's fine with it and has done so many practical things to make things easier for mum around the home. I did ask her if she would like to go to the over 60s group once a week or the Salvation Army lunch club to be with people her own age but she'd rather do things with me. I do take her to tea with my ex mother in law and also she comes with me to visit my partners elderly parents so she does socialise with others her own age. She's really happy and has put on a bit of weight as is eating much better than before so I must be doing something right!! I was just upset, hurt and surprised when she reacted the way she did yesterday so I just wont do it again. Mum is my priority and I have a different life now but that's fine X
     
  19. mousehold

    mousehold Registered User

    Mar 25, 2015
    27
    Norfolk
    wonderful people

    All you people caring so much are fantastic, please don't forget that. Some people have no one who cares for them, they are all alone. This is how I feel about my mum - I am always one step behind what is going on with her. After 5 years I still cannot catch up and do the right thing. I know logically that it is impossible to know what is coming next with this disease so how could I anticipate it? But that doesn't seem to help with this feeling of being behind the changes, not being good enough, not doing the right thing. I know logically that there is no right thing, but still this doesn't help with feelings of powerlessness. I am upset for her powerlessness too. I keep thinking how little control we have over our lives really.
     
  20. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    619
    Female
    Mousehold please dont be tough on yourself. I'm sure you do all the right things and are a wonderful carer. Hugs to you. Xxxx
     

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