Dont know if we can continue to do this...

Discussion in 'ARCHIVE FORUM: Support discussions' started by Josh, Jun 24, 2007.

  1. Josh

    Josh Registered User

    Jun 24, 2007
    28
    Nottingham
    I’m sorry if this is the wrong place to post a this, I’m new here and could really do with some help and advice.

    I’m currently caring along with my mother for my grandmother who is 76, she is suffering from Alzheimer’s, its taken us nearly 3 years to finally get a doctor to say the word Alzheimer’s. At first it was all just put down to old age. which we knew it wasnt just "old age"

    I know she isn’t the same woman she once was and I realise that we all do. But things are getting so so hard, not just the personal care side of things because that’s the easy bit. It’s the emotional side of things, the constant violent outbursts, the verbal abuse, even the repetitiveness of the convocation. 2 hours is starting to feel like a 12 hour night shift.

    Social services aren’t helping much at all, their help has so far stretched to a Toilet frame to make it easier for my Gran, but that’s about it. We have asked for just an hour’s break, just to be able to go out and do some shopping with out having to rush back, or to go out for a meal, two weeks ago a lady from Social services said she would get back to us but so far we haven’t herd back from her. I realise these things can take time. Having said all that I don’t for one minute believe that my Gran would allow any one to sit with her or even go to a day centre.

    My mum has left work to care for my Gran and I have also reduced my hours to part time in an effort to ease the load and stress on my mum.

    This just doesn’t seam to be working; where ever we turn it seams to be a dead end, its not helping the fact that we are both at our wits end. My mum pretty much summed up how we are feeling when she said “ I love my mum, but right now I don’t like her”, and this is a horrible nasty way to feel and we don’t want to feel like this .

    How do you guys do it? How do you cope?

    Right now this isn’t the best thing for my Gran, we are starting to almost resent her. It shouldn’t be like this.

    Sorry for the rant. I just needed to get this off my chest I know I am coming across as selfish but that’s honestly not me,
     
  2. jeanierec

    jeanierec Registered User

    May 7, 2007
    121
    north yorkshire
    Hi Josh

    The first thing I have to say to you is that YOU ARE NOT SELFISH I think we all feel like this to a degree .

    My mum has just been diagnosed with this awful disease and it has taken me quite a while to come to terms with it and I`m quite sure that I have many times to come when I will want to scream and shout about how unfair this all is but for the time being I would say thank god you have found TP. So many people on here will give you practical advice and emotional support....dip in and out as you need it
    but never feel guilty ....this is not of your making.

    Jeanie x
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,094
    Kent
    No Josh, you aren`t selfish.

    Welcome to TP. Sorry you need to be here.

    24 hour caring is the most demanding task anyone can take on, and as the condition deteriorates it becomes more and more difficult.

    The only way to cope is to take it as it comes, and when it gets too much, pester the services for help.

    My husband is 75, and like your gran, wouldn`t have anyone to sit with him or attend a day centre.

    What I have done is taken steps to get a Carers Assessment from Social Servics, so that things are in place when I feel I need help.

    The difficult behaviour is certainly the hardest, including the mood swings and inappropriate behaviour. The constantly repeated questions are wearing, but even so cannot be ignored.

    I can`t offer any constructive help, only support from TP. It doesn`t relieve the burden but sometimes helps to know you are not alone.

    Take care
     
  4. Josh

    Josh Registered User

    Jun 24, 2007
    28
    Nottingham
    Thanks for the replies.

    @ Grannie G,

    Your right, it does help to know I’m not the only one, some times it just feels like you are though, Almost like your trapped. But tomorrow (today now) is a new day. and thats what i keep telling myself. sometimes there are those small glimmers of hope and they are the things that i must start to look forward too and hope for.

    @ jeanierec,

    I do feel guilty, not for her illness but for feeling the way I do about the situation. i guess its a mixture of self pity (for my self & my mum) and pity for my Gran, I know its something that cant be helped, its just human nature I guess.

    I have a feeling this forum is going to become a home away from home, in the coming months. In the last hour or so I have had a good look around and read so many threads that I can relate too.

    Thank you,

    Wishing every one all the best.

    Josh
    - x -
     
  5. SteveS

    SteveS Registered User

    Jun 20, 2007
    41
    Altrincham, cheshire
    Josh,

    I too am new to having to cope. Be assured the folk on this forum are supportive, they all have seemingly gone through the mill as you are doing. I'm trying to come to terms with not getting my dad home, and its a hard stage for us at the moment.
    Keep it real, and support when you can - live your life as you need to, accept all the help that's available, go shopping, the pub or a meal out. It's a hard thing to express, but your / your family's life hasn't stopped, and your Gran wouldn't want you to stop either.

    Best wishes

    Steve
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Josh

    No, you're not selfish at all. You and your mum have had to completely rearrange your lives to care for your grandmother, and when all you get in return is abuse, you wouldn't be human if you didn't wonder what you were doing. We all have these feelings at times.

    I can't understand why it took so long to get a diagnosis. Your grandmother must have been 73, and that's not old (at least, I hope not!). Has she been prescribed any medication? If not, you need to get back to the doctor and demand a referral. It sounds as if she is well into the moderate stages, so would qualify for AD medication. It might not work, it doesn't for everyone, but it's certainly worth trying.

    Secondly, you need to get back to social services and demand a carers assessment for your mum. She is entitled to this, and to some help to allow her to get out.

    I'm not surprised you're both feeling so stressed. It's hard work even with support, and you haven't been getting any support.

    I hope you manage to get things sorted out, and in the meantime, welcome to TP, I'm sure you'll get lots of support here.

    Love,
     
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #7 Margarita, Jun 25, 2007
    Last edited: Jun 25, 2007
    I 2nd that

    its 5 years now I have been caring for my mother who is 76 , 2 year since I got the ball rolling to get support in for my mother as in getting her to AZ day-center, someone to help me wash her & my mother did not like going at the beginning , but I had to be realistic and know my limits in caring for my mother before I got to run down , my adult children who where teenagers when I started caring for my mother , youngest was 15 .

    they all supported me in pushing me to get outside help . my son even look after my mother for a week while I went on holiday for a rest , because my mother would not go to respite.

    But he said he could not do it another time , because my mother would not let him out of her sight for 5 min .

    So for the past year my mother has been going to respite ( care home ) mum just learn to trust me that I was bring her back home .

    The emotional side can still hit me out of the blue , just when I think I have a balance over it , but then I am only human I tell myself . Guilt use to hit me quite bad when I got outside help , but the guilt was just pulling me down , stopping me moving forward with my own life as I was depress all the time full of so much grief , but maybe its just part all part of the stages of caring .


    This year I push for more day at AZ day-center , they could not give me them .

    I think that in life you can see thing as a struggle or as a Challenge , perceiving life as a challenge gave me the motivation help me more , then seeing life as a struggle .

    Anyway

    So then found out SS run they they own daycentre, I got on SW case to get mum in to they . So thing are looking more positive , even thought back then I thought it would never happen.



    We all going to brighten (sp) beach for the day with social services day center on the 24 July , mum also does not seem so depress also , she enjoying all the entreatment that they have at SS day-center they given had a theater production last week , that she enjoyed so much that now she like going to that day center .
     
  8. Gill W

    Gill W Registered User

    Jan 31, 2007
    190
    Co. Durham
    Josh,

    Please start being forceful with Social Services, to the point of being a damned nuisance! My family have also found them lacking in providing care for my Grandmother, who's 86 and was diagnosed a little over two years ago.

    Recent events have conspired to prove us right in our demands on Social Services, and it's only now that my mam is starting to realise how hard it all is, taking care of Gran and doing things for her that SS just have refused to do so far.

    Get on that phone every day, and get an assessment for her. If it helps, call her GP and get him to ring SS too, his input may have some extra clout.

    My sister and I have taken over the case of contacting SS now, and blow me down, wheels are turning in the right direction it would appear. It took the statement that if they didn't get their finger out and help more, then we would be refusing to allow mam to continue caring and Gran would be their problem full stop. My mam is 64 and a widow, and she's taking all the stresses and strains on board and its gradually grinding her down.

    Stand your ground with them honey.

    Good luck and keep posting.

    Gill
    xx
     
  9. Josh

    Josh Registered User

    Jun 24, 2007
    28
    Nottingham
    Basically her GP was a …… well I’m not going to say the word as I’m trying to be polite although that’s hard when thinking about him and the fact that this could be happening to his other patients.

    After 2 ½ years of bashing our head against a brick wall, I contacted my GP, who has been my doctor since I was 2, he has been brilliant, even though he wasn’t my Grans doctor and had never met my Gran before, he made a home visit to my house with in an hour of my phone call.

    He really got the ball rolling and was the first professional to ever mention Alzheimer’s as a possibility. Since she moved in to our house we have changed her GP.

    As for the medication She is on what seams to be a cocktail of drugs from Diabetes tablets to pills that are suppose to keep her “regular” , although non prescribed for the Alzheimer’s its self.

    After finding this site yesterday, its given me a renewed focus, booked an Appointment for this evening with the doctor.

    That’s pretty much the convocation I have had this morning with social services, its amazing how as soon as you mention that they suddenly jump to attention, if it wasn’t for this site, and reading what other people are experiencing I don’t think I would have had the strength to say such a thing.

    We have woman coming on Wednesday afternoon, to discuss options with us. Fingers crossed things really start to get moving, even just one afternoon a month would be such a help.

    They are also, already talking about helping with washing facilities etc, as currently we are having to stretch the shower (which over the Bath) out in to the middle of the bathroom, where we place a child’s paddling pool on the floor, As physically she cant get in the bath.

    Just wanted to say a HUGE thank you, to every one on the forum, its already been such a source of strength reading through the threads and realising we are not alone.

    Wishing every one well,

    Josh

    - x -
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Josh

    Please don't say that to them, or that's all you'll get. You have to tell them what you need, it's up to them to say if it's not possible.

    As a guide, I started off with two afternoons a week, which was fine. When our situation deteriorated last year I asked for a review, and John now has one day aweek at daycare (as well as the two afternoons). I could have more days if I wanted them, but I'm managing OK just now, and I actually enjoy John's company (most of the time!).

    Respite care was also mentioned, but I said no to that too for the time being. But it helps to know I could have it if things became desperate.

    That's just a guide for you, but you should work out in advance with your mum what you want. There is so much help available, but you have to know to ask for it. No-one offers!:(

    Good luck, and I hope you get somewhere with the medication too. Th first GP sounds awful, well done for changing.
     
  11. Jane1

    Jane1 Registered User

    Mar 3, 2007
    54
    Leicestershire
    Hi Josh,
    my comments only come from personal experience as my dad suffers from Alzeimers. Do not feel guilty, or try not to, you will but you have to balance this illness with your own needs and your mums. I assume you have your Grans GP on board as they may be able to offer medication to calm her down! Social services need to be pushed all the way. Thay have a duty of care and have to offer that to you. Day care for your Gran, should be thought about and even tried. She may surprise you. My Dad likes it but he'd never tell me that he sings along to the songs at singing time!!
    You can only ever do what you think is right
     
  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #12 Margarita, Jun 25, 2007
    Last edited: Jun 25, 2007
    When my mother got to the stage that she could not get out of the bath as one day my son and I had to lift her got , so after that she never got into bath .

    Social services did a referral for the occupational therapy to come around and do an assessment on my mother . I told them what was happening with my mother getting in out of bath and they done a referral to the adaption unit to take out bath and put in walk in shower .

    Since I have move in to another place , we keep the bath in new house & the occupational therapy gave us a bath Lift that has a remote control , that when mum sits on it , it lower her into bath , then raises her up .

    But she said that if we feel that we need the walk in shower , they do the adaption for a walk in shower .
     
  13. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    I don't know what this Reply With Quote means, but if this gets through to you, Josh, just to say I am new to all this too. But somehow get Social Services on board, by pestering, begging or whatever. My experience is that is hard to get them moving, but once they move they are astonishing. So ring whoever you can to get them going - I rang a volunteer Alzheimer's lady, whose name was given to me by our local Volunteer Centre, and she gave me the right phone number, not the one that was in the phone book. If your mum is doing anything rash, like going out at night, ring the police. They can get things moving too. Get things moving, you will be surprised at what then happens.

    Please don't try and manage it all yourself. You don't actually know what you are doing, you are floundering, and the professionals are the ones to get on board.

    Once you have got things in place, you can always say, No, I would rather do that myself if you think that is right, and they will be thrilled to hear it, but initially get social services involved and press for that. Don't give up.

    You have already read about people who won't have carers. Get in there before it gets to that stage so that your parent accepts the help.

    I haven't experienced mood swings, just a few irrational arguments.

    But come back to us all on this website, it is a great resouce, but get social services on board pronto. Via your GP.

    Much loved Josh,


    QUOTE=Grannie G]No Josh, you aren`t selfish.

    Welcome to TP. Sorry you need to be here.

    24 hour caring is the most demanding task anyone can take on, and as the condition deteriorates it becomes more and more difficult.

    The only way to cope is to take it as it comes, and when it gets too much, pester the services for help.

    My husband is 75, and like your gran, wouldn`t have anyone to sit with him or attend a day centre.

    What I have done is taken steps to get a Carers Assessment from Social Servics, so that things are in place when I feel I need help.

    The difficult behaviour is certainly the hardest, including the mood swings and inappropriate behaviour. The constantly repeated questions are wearing, but even so cannot be ignored.

    I can`t offer any constructive help, only support from TP. It doesn`t relieve the burden but sometimes helps to know you are not alone.

    Take care[/QUOTE]
     
  14. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    MRGarita,

    You sound to be doing so well now, well done for all the hard work in getting you mum to agree to things.

    Be proud of yourself.

    Love

    Margaret

     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #15 Margarita, Jun 26, 2007
    Last edited: Jun 26, 2007
    Thank-you Margaret for saying that


    You spot on when you say irrational arguments Margaret .

    I use to have them with my mother , I use to take them so for real . I would argue back challenging her back as , then I would get right upset , frustrated I did not know if I was coming or going mental.

    But then as time went on and I relies what was happening to mum , so did not argue, or challenge her back and life with mum became more easy and I could handle those irrational arguments.

    Hard to explain , but I learn the hard way to perceive her irrational argument , in a way that she would see my point of view , because I learn to work around it . as to her it was all so real those irrational arguments.............. Mum can still do it still, to this day , It all just learning to live with it , without us the carer stressing ourself mentally over it , as I know I did at the beginning with caring for my mother

    You pick up on it sooner then I did Margaret , Good for you , It all help in our caring Role to understand . Thanks for sharing
     

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