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.

Re: Support network, huh! What support network.

Discussion in 'I care for a person with dementia' started by VonVee, Jan 20, 2015.

  1. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    From my last post, my world has been turned upside down, inside out, etc etc, I've been propelled into this surreal universe, and I can't do a damn thing about it, I know that probably sounds really selfish of me, and I sincerely appologise
    for the way I am feeling tonight, but I didn't ask for this, I don't necessarily want or need this kind of stress in my life on a daily basis, and I feel what with my dad dying and knowing and hiding and leaving my mum in this situation, and leaving me to deal with it all, I feel very much that it's been lumbered onto me, again I appologise for feeling this way, I am a nice person, I'm a good person I promise you, but I've got a lot to deal with, a lot has been put upon my shoulders here, and it's only been 6 or 7 weeks since I found my dad's dead body, and mum in the state she was, and it hasn't been easy it's been really hard for me, I'm an only child, and I'm trying my best, I don't have a big friends network to turn too, and I don't have a lot of support at home either, the other day I was in the kitchen with my husband and I was talking to him about my day and about mum etc, and I turned around and I realised that I was talking to myself, he had walked off mid talk, and went down stairs, and I thought he was behind me while I was stiring the dinner listening to me, and this wave of depression came over me in an instant, as I realised I have no one here, no help, no support no nothing, it's all left for me to deal with, it's almost like, your mother, your problem you know, and that's how I'm feeling.
    My mum now has a care package in place, the social workers eventually got there finger out, she has 4 carers going in a day, and they've taken over her med's, which takes it off me a bit, but they only stay for like 15-30 minutes, and when they ask mum if she needs anything done, it's usually too late as its been done by me already, you see, I'm at my mums every day from 10am to 2.45pm Monday to Friday, call it guilt, or a conscience, or whatever, but I feel that I need to go everyday to keep an eye on her, I feel bad for leaving her on her own, especially when she goes in and out of her mind pattern like she's been doing, I feel like, how can I not go and be there, but I'm bloody totally exhausted, and I feel like no one in my life knows or even cares about what I'm going through, mainly my family and there attitudes etc, is what I really mean here. I feel so alone, I just feel on my own, and that's basically it.
    It's like I've asked for help, but a brick wall comes down every time, and I can't get a carers assessment for 4 months due to nhs cuts, and I can't get bereavement therapy until it's been 6 months, and I need some help and support now, as I feel like I'm losing my self and I don't know how much longer I can go on for before I crumble.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    Well I do know how you feel. Quite apart from the sheer boredom of drudgery is the frustration of not being able to access the services that you know are out there but always just beyond your reach.

    Anger will only get you so far though and may well shove your blood pressure up which will do you no good at all. I have accepted bits and pieces of support from some of the Volunteer charities out there who will sit with my husband chatting or watching TV or in your case take your Mum for a walk or shopping.

    Ask your SW contact if she can connect you with some of these and see if someone can visit to give you a break.its not a permanent solution but it is a start.
     
  3. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,109
    hertfordshire
    Hi, I am sorry you are not getting the support from your family, even if they just listen it does help, but we are here to listen to you. You are of course grieving for your Dad and on top of that trying to deal with your Mums problems. It all sounds like too much for you to me, have you thought about trying to get your Mum into permanent care? Obviously this would give you another battle with SS if your Mum is not self funding, you need a break from dealing with everything, perhaps you could ask for Mum to go into respite for a week or two. This will make you ill, sounds like you need to see your GP for some help too. Sorry I am not really being much help, just didn't want to ignore your post, sending hugs to you xx

    Ange
     
  4. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    Thank you marionq, I appreciate your thoughts, it's good to know at least I have some support here, which is nice, and I appreciate you taking the time to respond, so thanks very much hon. I am trying to hold it together I promise. Vonvee x

     
  5. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    Thank you ange for caring and taking the time to support me, that in itself means a lot, who needs a selfish hubby and family huh!

    I did actually ask for some respite care in December but I was told by the social worker, that contrary to what my mother tells me, my mother told them (CM/SW) that she didn't want to be moved or leave, so respite care would not be happening. ( even tho my mother forgets what she says with a few minutes of saying it) so my mother gets the care, but I don't get anything, even though they can see me struggling.. Not fair is it.x



     
  6. Solihull

    Solihull Registered User

    Oct 2, 2014
    97
    West Midlands
    VonVee, just try & imagine what would happen if you were ill and could not help your mum at all. This is what decided me when my mum had several falls, I lived ten miles away (only "child" at 63) and I had a bad back. She had to be admitted to hospital due to self neglect as she was telling everyone how she ate well and drank plenty-she was under six stone and completely dehydrated. I love her dearly but yes a care home was the only answer. We looked around locally and told mum that the doctors needed her to be there for health reasons until she improved. The care home manager came out and assessed mum and agreed that it would suit her care needs. In five months she has gained over a stone in weight, is safe, clean and quite happy. She has accepted her new home as time has progressed and she cannot remember her previous home now even though she lived there for 55 years. I am just starting to get my life back. I know before all this my husband was very caring but I realise now how much I must have let the situation take over our lives as he did "switch off" at times. I hope you can find a solution, take care.
    Sue
     
  7. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    So sorry you are not getting the support you need and deserve. The shock of losing your dad so recently would be hard enough without having to provide so much support to your mum. Can you sit your husband down and tell him how much you are struggling? He may not feel able to give practical help in caring for mum but at least he should be providing a shoulder to cry on.

    You are dealing with a lot but I hope u can stay strong enough to give your mum the support she needs. Take care and I do hope things look less bleak for you soon.
     
  8. tootyruthy

    tootyruthy Registered User

    Jan 20, 2015
    7
    That sounds really hard for you :( would you be able to get to any dementia support groups with your mum - like are there any Alzheimer's cafes, or singing or reading groups for sufferers and their carers in your area? Making contact with other people in similar situations would maybe help... which you are doing here... so that's good! :) It IS surreal, isn't it. I find it so odd that my mum doesn't seem to even realise that she has Alzheimer's... when once we were so open and chatty with each other about everything. It's like a massive surreal elephant in the room.
     
  9. velocity

    velocity Registered User

    Feb 18, 2013
    173
    North Notts
    Hi
    As well as this forum which is excellent, there is an organisation 'Cruse' that help with bereavement, perhaps there is one in/close to your area. xx
     
  10. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,951
    I think you should call the samaritans and have a long chat with them. Although you might say what good will it do talking to people who don't have the answers, they aren't specialist dementia workers, I think it would be good for you just to be listened to and be able to say all this to someone who actually listens. Having read your previous thread I would be amazed if you didn't feel dreadful.
    I am also amazed that your mum was not taken straight into care for a while.

    So please, go late to your mum's today, instead spend the first half hour or hour talking to the samaritans on the phone

    08457 90 90 90 * (UK)

    And then tomorrow perhaps call the Alzheimers Society who may be able to give you some advice about what to actually do next, they gave me help and good advice a few years ago.
     
  11. susy

    susy Registered User

    Jul 29, 2013
    806
    North East
    Vonvee you have a lot of support here, please remember that. Tell us all that you want to. No one here will think badly towards you. You have gone through a lot. I wonder if a short course of antidepressants would help you. It's an awful lot that you have gone through and are going through, it really wouldn't surprise me if it affected you in this way. Have a chat with your GP and see what they think.
    Please keep posting xxxx
     
  12. Karjo

    Karjo Registered User

    Jan 11, 2012
    481
    iWhat a terrible time you are having, and no you are not selfish, just distressed , upset and overwhelmed.
    This illness really can tear families apart.
    Your husband is probably struggling as well, not knowing what can be done as his life falls apart with you. In all sincerity he probably does not realise just how much support a dementia sufferer needs, you wouldn't have before you were thrown in at the deep end, and he is also no doubt also a bit jealous of the time you spend with your Mum. He might not even like your Mum (my husband didn't like mine and I can't blame him as she could be horrible) Unfortunately only you know the full extent of her needs and no doubt everything you do is undone by mum anyway, doubling the needs all the time.
    If it helps at all I also was just about at breaking point and felt others could not appreciate how difficult it was. I am sure my family thought I was just pandering to my horrible Mum, and the more I gave the more she took and the more the rest seemed to withdraw leaving me even more lonely and cross with them all.
    Then the crisis came and mum was sectioned, and my family started to pull together realising this really was something beyond my capability and that she could not help it. But it all takes time and understanding of something that is incomprehensible. Please be patient with your husband, all he can probably see is his wife drowning in this and hoping he will throw a lifeline when he doesn't know how and resents the whole situation. My husband is now a rock and visits mum frequently, she is still awful most of the time but funnily enough never with him. He even says he likes her now! So there is hope.
    Try and be patient if you can, and please don't let this tear you apart from your husband, unless of course he is an absolute a*se!

    I've been propelled into this surreal universe, and I can't do a damn thing about it, I know that probably sounds really selfish of me, and I sincerely appologise
    for the way I am feeling tonight, but I didn't ask for this, I don't necessarily want or need this kind of stress in my life on a daily basis, and I feel what with my dad dying and knowing and hiding and leaving my mum in this situation, and leaving me to deal with it all, I feel very much that it's been lumbered onto me, again I appologise for feeling this way, I am a nice person, I'm a good person I promise you, but I've got a lot to deal with, a lot has been put upon my shoulders here, and it's only been 6 or 7 weeks since I found my dad's dead body, and mum in the state she was, and it hasn't been easy it's been really hard for me, I'm an only child, and I'm trying my best, I don't have a big friends network to turn too, and I don't have a lot of support at home either, the other day I was in the kitchen with my husband and I was talking to him about my day and about mum etc, and I turned around and I realised that I was talking to myself, he had walked off mid talk, and went down stairs, and I thought he was behind me while I was stiring the dinner listening to me, and this wave of depression came over me in an instant, as I realised I have no one here, no help, no support no nothing, it's all left for me to deal with, it's almost like, your mother, your problem you know, and that's how I'm feeling.
    My mum now has a care package in place, the social workers eventually got there finger out, she has 4 carers going in a day, and they've taken over her med's, which takes it off me a bit, but they only stay for like 15-30 minutes, and when they ask mum if she needs anything done, it's usually too late as its been done by me already, you see, I'm at my mums every day from 10am to 2.45pm Monday to Friday, call it guilt, or a conscience, or whatever, but I feel that I need to go everyday to keep an eye on her, I feel bad for leaving her on her own, especially when she goes in and out of her mind pattern like she's been doing, I feel like, how can I not go and be there, but I'm bloody totally exhausted, and I feel like no one in my life knows or even cares about what I'm going through, mainly my family and there attitudes etc, is what I really mean here. I feel so alone, I just feel on my own, and that's basically it.
    It's like I've asked for help, but a brick wall comes down every time, and I can't get a carers assessment for 4 months due to nhs cuts, and I can't get bereavement therapy until it's been 6 months, and I need some help and support now, as I feel like I'm losing my self and I don't know how much longer I can go on for before I crumble.[/QUOTE]
     
  13. SueShell

    SueShell Registered User

    Sep 13, 2012
    403
    Orpington
    Vonvee, I so understand. I too am only child but no husband, and struggled on my own. I would love to give you some words of wisdom, but the reality is there isn't much support out there and I also had no life whatsoever and the whole situation with my Mum made me very I'll. You need to ensure you shout the loudest regarding SS because otherwise you'll be ignored. Feeling its taken over your life, feeling resentful is normal. Weve all been there, done it and got the tee shirt. Talking point is the only support I have ever received. Everyone on here is wonderful. Take care of yourself, Sue
     
  14. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Hello Von Vee I just wanted to reply to you personally because I find myself in very much the same situation as you. My Mum died in Jne 2014, leaving my Dad (who has vascular dementia) without a carer. He has deteriorated a lot since then. I too am an only child with no help or support in the area. I have had such a problem with SS trying to get the right care package for Dad and I am totally exhausted. I have been suffering from insomnia, heartburn, indigestion and aches and pains. I am upset about my Mum and grieving a Dad who is like a Zombie. Without my help shopping, cleaning, clothes washing, banking, trips for health appointments, my Dad wouldn't be able to stay at home. I am getting to the end of my tether cos I work full time too. I suppose my advice is to get a carers assessment if you haven't already and involve your Dads GP. The Alzheimers Society have been very helpful, SS havent. In fact they have made things worse. I feel so guilty all the time. You are not alone, there are others out there who really sympathise. I feel very lonely but when I come on this forum I feel less lonely. Try getting to a memory cafe too.
    I need to take care of myself more. I am comfort eating, overweight and knackered. People on this forum are great, very supportive, so please vent here if you need to get it all out.
    Cerridwen

    ;1049366]From my last post, my world has been turned upside down, inside out, etc etc, I've been propelled into this surreal universe, and I can't do a damn thing about it, I know that probably sounds really selfish of me, and I sincerely appologise
    for the way I am feeling tonight, but I didn't ask for this, I don't necessarily want or need this kind of stress in my life on a daily basis, and I feel what with my dad dying and knowing and hiding and leaving my mum in this situation, and leaving me to deal with it all, I feel very much that it's been lumbered onto me, again I appologise for feeling this way, I am a nice person, I'm a good person I promise you, but I've got a lot to deal with, a lot has been put upon my shoulders here, and it's only been 6 or 7 weeks since I found my dad's dead body, and mum in the state she was, and it hasn't been easy it's been really hard for me, I'm an only child, and I'm trying my best, I don't have a big friends network to turn too, and I don't have a lot of support at home either, the other day I was in the kitchen with my husband and I was talking to him about my day and about mum etc, and I turned around and I realised that I was talking to myself, he had walked off mid talk, and went down stairs, and I thought he was behind me while I was stiring the dinner listening to me, and this wave of depression came over me in an instant, as I realised I have no one here, no help, no support no nothing, it's all left for me to deal with, it's almost like, your mother, your problem you know, and that's how I'm feeling.
    My mum now has a care package in place, the social workers eventually got there finger out, she has 4 carers going in a day, and they've taken over her med's, which takes it off me a bit, but they only stay for like 15-30 minutes, and when they ask mum if she needs anything done, it's usually too late as its been done by me already, you see, I'm at my mums every day from 10am to 2.45pm Monday to Friday, call it guilt, or a conscience, or whatever, but I feel that I need to go everyday to keep an eye on her, I feel bad for leaving her on her own, especially when she goes in and out of her mind pattern like she's been doing, I feel like, how can I not go and be there, but I'm bloody totally exhausted, and I feel like no one in my life knows or even cares about what I'm going through, mainly my family and there attitudes etc, is what I really mean here. I feel so alone, I just feel on my own, and that's basically it.
    It's like I've asked for help, but a brick wall comes down every time, and I can't get a carers assessment for 4 months due to nhs cuts, and I can't get bereavement therapy until it's been 6 months, and I need some help and support now, as I feel like I'm losing my self and I don't know how much longer I can go on for before I crumble.[/QUOTE]
     
  15. bunnies

    bunnies Registered User

    May 16, 2010
    432
    There are so many of us who will recognise that feeling of all the responsibility being on our shoulders, and there being no-one around to help and it feeling overwhelming. I think we need to recognise that we aren't super heroes - we can help, but we can't do it all. I suggest you don't spend as much time at your mother's. You are there half the day every day - your mother has carers, who although they won't do what you think needs doing, they will at least spot an emergency. My view is that we all need to lower our standards, and not try and keep all those balls in the air. I encourage you to drop a few and see what happens...

    Sooner or later there will be a crisis, because you can't keep this up, and the only way anyone will be alerted of this and your need for more help is if you step back just a bit. I don't suggest this so that you do this to prompt a crisis, but because I think you need and deserve more healing time. Can you decide to go for a shorter period each day, or don't go every day?
     
  16. marts1711

    marts1711 Registered User

    Oct 25, 2014
    44

    I feel for you. Just a little thing this but in April this year the new Care Act 2014 comes into force and social services have to offer you, as a carer, an assessment in your own right.
    They have to do this by law and they have to point you in the direction of help available in your local area. You are just as vulnerable as your mum. Ask the social worker as your local authority may well have this in place already. They can offer things like counselling, respite for you and maybe help with your expenses as your travelling to see your mum everyday.
    Hope this helps a little and keep your chin up.
     
  17. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Bunnies - your post really spoke to me

    Hi Bunnies
    I was feeling pretty desperate and stressed about my Dads situation and I read your post. You are absolutely right; we can't do it all. I feel so much happier having read your post, thank you. I hope Von Vee will also find it comforting. I need to lower my standards, Dad is safe, if not always comfortable.
    Cerridwen
     
  18. Pinnochio

    Pinnochio Registered User

    Dec 3, 2012
    16
    Hi,
    I am in a similiar situation and feel as if I am going mad! As I've said before, we are not trained to care for our elderly parents with Alzheimers! I don't have siblings to share things with, mum 6/30 on the MMSE had Alzheimers diagnosed about 4 years ago, she lives in a self contained granny annexe next to us, I have looked after her on my own till today! now have 30 mins help to get her washed and dressed, however I have not found the County Council or social workers very helpful, they have told me off, been rude (I am new to all this!) I have informed them that certain things such as her Date of Birth for a start are incorrect, have said this 5 times to them, it's still wrong on her paperwork! the assesment has incorrect information, some of it doesn't matter such as her brothers wife (should be my son's MIL) along with the reason for help is I can't cope anymore, not strictly true, and that I pop in when I can, I pop in throughout the day with food, shopping, washing, from 7am to 10.30pm! Or throughout the night if needed! Lots of other bits and pieces that are not correct, don't know what to do about as I am too scared to speak to them again! Now the pension service were absolutely lovely to speak too, very helpful!
     
  19. VonVee

    VonVee Registered User

    Dec 15, 2014
    70
    Poole Dorset
    Dear Pinnochio,

    I read your post to me with interest, because we are both in very simular situations arent we, and i feel for you, because i think i get you, it sounds to me that we are both trying to do the RIGHT thing as a daughter, and we do it for as long as we can, and then one day something goes bang or pop, and its usually our sanity! I like you, if you can call it that, have a granny annexx within our property, and for 7 years my parents lived with me, and its safe to say, this is the reason that they went to live in a sheltered housing one bedroom ground floor flat, because, same as you, i couldnt do
    It anymore, my mental sanity was taking a bashing daily of abuse, snide comments, accunisations, blame, guilt, and terrible awful arguments and fights, and at the same time trying to be a mother and a wife with at the time very young children, and i/we found ourselves in this situation for 7 years because my mum and dad did not want to go into a home, so when we moved out of my MIL's house, to move into our now home, my parents moved in with us, because we were trying to do the RIGHT thing, safe to say it did not work, and when they moved out, i was left with £1600 of damage in the annex and had to have a new kitchen and bathroom put in as they trashed the place, with there very old fashioned nearly exstinct washing/washing up routines, and over 7 years it took its toll, leaving me with a huge bill afterwards. They did exactly the same in the flat ironicly, but i was away from it and kept myself away and didnt involve myself in it. But with dad dying, im back into it every day, because i feel with being the only child that i have to, simple, shes 82, shes got dementia, shes a vulnerable adult, and what kind of child would i be if i didnt have her back, theres no one else to help her, so she needs me, so i got to do what i got to do, but that dos'nt mean i have to feel happy about this situation my dear dad has left lumbered me with, and like you i also feel as if im going mad! Its really hard isnt it. By the way, SW are rubbish really, i dont find them very helpfull either, but i am having a carers assessment next week, so seeing is believing i guess. Take care, chin up hon, we can do this you know, how ever we are finding it hard.. If you ever need to talk or for someone to listen im here for you. Vonvee. 1051747]Hi,
    I am in a similiar situation and feel as if I am going mad! As I've said before, we are not trained to care for our elderly parents with Alzheimers! I don't have siblings to share things with, mum 6/30 on the MMSE had Alzheimers diagnosed about 4 years ago, she lives in a self contained granny annexe next to us, I have looked after her on my own till today! now have 30 mins help to get her washed and dressed, however I have not found the County Council or social workers very helpful, they have told me off, been rude (I am new to all this!) I have informed them that certain things such as her Date of Birth for a start are incorrect, have said this 5 times to them, it's still wrong on her paperwork! the assesment has incorrect information, some of it doesn't matter such as her brothers wife (should be my son's MIL) along with the reason for help is I can't cope anymore, not strictly true, and that I pop in when I can, I pop in throughout the day with food, shopping, washing, from 7am to 10.30pm! Or throughout the night if needed! Lots of other bits and pieces that are not correct, don't know what to do about as I am too scared to speak to them again! Now the pension service were absolutely lovely to speak too, very helpful![/QUOTE]
     
  20. skaface

    skaface Registered User

    Jul 18, 2011
    108
    Ramsgate
    Hi, I hope you are getting the support you need now - have you been offered the help of an Admiral Nurse?

    Last year, when I was at the end of my tether with my mum, she was supposed to go to the dentist, when I turned up to take her she said she knew nothing about it (even though I had reminded her the day before and earlier the same day) got angry and turned me out of her house.

    At that point I went to the place she goes for her MMSE and asked to speak to someone, they gave me the number of a lovely lady who is the Admiral Nurse for my area who made an appointment for me to see her. She calmed me down, talked me through my concerns and I felt so much better afterwards.

    I actually need to speak to her again as I'm beginning to slide under the water again and that's not good for either my mum or me.

    I think I will also try to get into some support groups locally, trouble is mum won't go to any day centres which I think will help her - she complains bitterly that she sees nobody and has nobody to speak to but then won't go with me to any social activities.
     

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