1. Expert Q&A: Living well as a carer - Weds 28 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Wednesday 28 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

How am I doing? I dunno...

Discussion in 'I care for a person with dementia' started by VonVee, Mar 10, 2015.

  1. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    Someone asked me the other day, how was I doing and you know what I could'nt really answer her question, because I didn't know what to say, because if I smiled and put a brave face on and said oh things are great, then I would be lying, and that's not me, I'm a very honest and open person you see and a friendly sort, who talks the hind legs off a donkey to anyone who will listen usually, but the other day and I guess also today, I felt like saying nothing, because, to be honest with you, I'm 101% spent, I've got nothing else to give at the moment, because all I want to do is sit down with a cuppa or latte and just chill or just lie down on the bed at home and go to sleep, but all the sleep in the world is of not much help, as I get up feeling as tired as I did when I went to bed, and everyday is a bind, I wake up, get dressed, have a wash, then I go to mums, where I'm her carer till about 2.30 then I leave and it's down to the school to pick up my son to go home, then it's sorting there dinner out, and waiting for the daughter to get in, to hear her adventures at school and play the who is it today game! and depending what mood the kids are in, calls the shots for how the evening goes, which is 50/50, my kids are pretty demanding, my son has SEN needs you see, and my daughter is nearly 13, so everything is a drama, so say no more, anyway, they are talking away, and I know this sounds really bloody awful, but I can't tell you what they are talking about, because I'm not really listening, I've shut off, I've shut down, I guess, and I feel like I'm in my own little bubble with everything going on around me on the outside, I love them dearly, but I have no time for them, and I only realised this when my husband came home from work last night and said, you look really really tired Vonne, and like the kids he's in the same boat as them, since my dad died and I've been caring for my mum, I think me and him have probably said 2 dozen words to each other, and when we do talk it usually ends up in a spat or upset of some kind, and it can't go on like this can it! But then at the same time, my mum has no one else but me, and i feel I can't let her down. We are still waiting for the memory clinic appointment and for diagnosis, but she's started slurring and muddling up her words now, and when she does it she looks at me as if to say what the hell was that, and she's getting a pro at wandering off, we can be talking one minute, and the next she's got up and gone off, I'm always there of course to make sure she don't fall or hurt herself, but she always comes back with that glassy eye look going on, and sees me and asks, hello bossy lady can you tell me what flat I live in please, and with that I take her arm, and lead her back into her home. I feel sorry for her, I feel sorry for myself, but I also feel sorry for my family, because they are putting up with this, and it's not right is it, and it is, it must be effecting them, and it makes me feel bad and guilty, because I feel that I'm between a rock and a hard place here, and I can't do a damn thing about it until reality speaking she dies. (And now I don't just feel bad, guilty, I feel trapped as well).

    Does any one else feel this way, getting fed up with the tedium, the Bordem, the same thing everyday, and the guilt that goes with it, because at the moment I feel like I'm going mad. Xx.
     
  2. garnuft

    garnuft Registered User

    Sep 7, 2012
    6,589
    Yes. I feel the same.

    I felt it, most stingingly when I was doing what you are doing now...spending my days with Mam while my son was at the day centre and returning home to make tea, sort out the washing, hoover, change bedding, clean windows...

    It is all so relentless.

    Now I am caring for my disabled son and 'only' twice weekly calling in to help my Ma and Pa-in-law.

    My Other half visits them three times a week and in the meantime, when we are at home, we have my 27 year old autistic, severely disabled son.

    Some evenings we hardly speak, but a quick clutch of a shoulder, a rub of a knee...a meeting of eyes...keeps us on the straight and narrow. :)

    Don't forget you and your husband in all of this maelstrom. x
     
  3. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,265
    Female
    near Folkestone
    This is so written from the heart that I am sitting here not knowing how to answer yet at same time my heart goes out to you . I have no answers other than I do understand . I think we all get to that point where no emotions are left and the auto pilot takes over. Sorry I am not much help :( but I hear you and understand . Sending hugs xxx


    Sent from my iPhone using Talking Point
     
  4. TDA

    TDA Registered User

    Mar 3, 2015
    25
    I really feel for you - I have been living with my mum more or less 24/7 since dad died before xmas. I am the only one who 'can' do this, I have no kids and my partner works away from home during the week, so we're used to not seeing each other. But we are suffering too, and my poor dogs are confused and upset.

    We have got to the point of looking for some more help. My mum goes to a day centre locally 2 days a week and she always really enjoys it. Not always keen to go but generally smiling and happy when I collect her
     
  5. Liz57

    Liz57 Registered User

    Dec 22, 2013
    184
    Funny but I've had a similar conversation today with a chap from Social Services who called because he'd had a call from my brother who, undoubtedly with the best of intentions but located some 200 miles away, thinks they should be doing something.

    I explained to SS that mum is my mum and although she doesn't look neglected or "at risk" she most certainly would be so if I wasn't there for her. I spend something like three to four hours a day with her, even on day care days (twice a week from 9.30 - 2.30) - longer at the weekend - and without me she wouldn't be able to shop, cook for herself, collect or take her medication, or get out at all. When she's alone, even for half an hour, the phone calls start which makes it almost impossible for me to run my own house or do one of my two part time jobs which is home based. I gave up a well paid job to be able to offer mum support but there's no one to support me and because I can't afford to pay for care for her (she's self funding but POA hasn't come through yet), this is how it's going to be. According to SS, she's not a priority as she's not at risk but they can't see how she's only not at risk because I have made a decision not to leave a frightened, hungry befuddled old lady alone all day every day. Yes, trapped is definitely a word I'd use.
     
  6. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    Hi, TDA, thanks hon, I really appreciate your thoughts, it's funny you mentioned about your dogs, because I think mine picks up the chaos and stresses of our life, because all she does is sleep and sleep and when she's she's stuck to us like glue, and I really believe shes might just be as depressed as we are. Xx
     
  7. TDA

    TDA Registered User

    Mar 3, 2015
    25
    VonVee, the only thing that got me upset when the Care for the Carer lady called to see me was the fact that I was neglecting my dogs and horses!

    I have 3 terriers, one is with me at my mums all the time (he's a baby/wuss) I've had to put no.2 in doggy day/nightcare during the week and I can see how upset he is when I collect him/drop him off, even though he is fine when I've gone, no.3 is staying home alone at my house with her three remaining puppies! I visit 2/3 times a day.She had them just before xmas, obviously it all happened before I came to stay here. Hope the pups will have new homes very soon, so maddie can come here too, though she'll have to live outside and she's not used to that either
     
  8. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    Hiya Liz

    Yeah I'm with you, and I know exactly how you feel hon, because I'm at my mums, 9.30/10.00 - 2.30 mon to fri, sometimes sat, but I try to have sat and sun off because otherwise I think I'd turn doolally you know, and also if I didn't the house would be a tip, no laundry or ironing done, no kids fed etc, and it does help me a little bit, I' l be honest, I'm not a natural care giver at all and my heart goes out to the folks who do it for a living, bless them, they are Truely miracle workers.... We don't get funding either, it's all being sorted out now I hope, but I'll doubt we'll get any benefits etc, I've been told I may need to pay for the carers she's getting, but her rents gone up, and if I have to pay for carers as well it's going to be really tight, maybe I cut down the carers care from 4 to 2 a day after I leave or something, but I know I'm not strong enough to be able to this 24/7 on my own, because it's killing me now, so god knows what I'd be like if this is all on me, because my home family life is on the rocks now... Ya know... I'm here for you hon as a friend if you ever want a chat or an ear.. I'm just here for you if you need someone ok.. Xxx



     
  9. stu100

    stu100 Registered User

    Feb 4, 2015
    70
    Birmingham
    When iam asked how iam doing I normally say I don't know plus I feel people don't really want to know
     
  10. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    Everything about AD is based on money, money, money. The Local Authority really doesn't want to help you because it could cost them money. SS doesn't really want to help you because it could cost them money. If you are a carer for someone with AD you are more or less left to get on with it. Countless governments have treated those with AD and their Carers and families in a shameless manner, it's a National Disgrace.
     

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