1. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    Just wanted to share with you something that happened yesterday, as I'm still quite upset/annoyed by it.

    My Mum and Dad have cared for my Nan (my Mum's Mum) in our home now for about eight years, and lately we have noticed her behaviour deteriorate a little again, which is always upsetting.

    My Mum's brother (who has never lifted a finger to help) came to visit yesterday, whilst my parents were out, and then continued to tell my Mum how my Nan made drinks for them etc (when my Nan would really struggle to do this).

    To cut a long story short (or try to), we had an incident in the week where my Nan tried to make drinks for people - we were not aware of this until I discovered her repeatedly sipping the tea she was stirring from the teaspoon before stirring the drinks again.

    In what I think was an attempt to gain some emotion from her Brother (my uncle), my Mum e-mailed him to explain the deterioration in my Nan. My Uncle then replied in his normal patronising tone that this was to be expected of the disease, and that this did not bother him a great deal as he as had previous experience of the disease with other people!

    This upset my Mum a great deal, as she felt he was patronising us, and implying that we're not dealing with my Nan very well. He also had never ever cared for anyone - not even his own children.

    I was so annoyed that I began typing a reply to him - just to make myself feel better and not really thinking about sending it, but in the end I did just that, and now I'm not sure what to expect back from him.

    Has anyone else any experiences like this, and how do you/did you cope with it? My Mum feels like she's on her own with this - with my Nan getting worse and my parents still working full-time, I think she's near breaking point with the guilt of my Nan being at home all day without any care.


    xx
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    All too familiar. Families seem to fall into at least four camps regarding the caring process:

    'them what does' [i.e. us]
    'them what doesn't'
    'them what doesn't' but tells 'them what does' how to
    'them what doesn't' and tells 'them what does' not to

    I find that writing an e-mail or letter to the person like your uncle, and being totally open about feelings, is great as a safety valve.

    Usually I delete such an e-mail/destroy such a letter rather than send it. That serves the dual purpose of venting my feelings, yet still keeping the door open for the future. Such people would rarely be changed by such communications anyway. I think that probably they are like they are because they have insufficient moral fibre to actually do anything to help.

    It's a horrible illness and at the end of the day you have to care enough about the patient to pitch in and do something to help them, at whatever expense to yourself emotionally.

    Has your Mum seen this forum at all?
     
  3. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    Hi Brucie,

    I did actually write in the e-mail that I was writing it more for my own sense of peace than to create any changes. Oh well, what's done is done as they say!

    My mum has read things on this site and I talk to her about it quite a bit, but she's still not really confident about using the internet so I think it will be a while before she feels ok about coming on here herself.

    We've got an appointment with a psychiatrist to get my Nan re-assessed later this month, and my Mum has been in contact with the district nurse recently who is meant to be visiting this month also to check my Nan's diabetes problems and the incontinence also.

    I think the thing that's really weighing on my Mum's mind is the care that my Nan isn't getting. My sister and I are both at Uni so are in and out of the house during the week, but she is still largely left alone here. She feels guilty but has no idea what to do about it.
     
  4. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Hi Emma

    I'm an only one so although the whole burden falls on me there is no family in the background making me angrier by doing nothing!

    I think your Mum nneds to speak to someone like Crossroads (there is a web site) to arrange a sitting service before Mum went into the Home someone used to come a couple of times a week. They can also sometimes arrange a night sleepover. Have you looked at the idea of Homecare from Social Services, to get your Nan up and out her to bed and maybe even pop in at lunchtimes. I feel for your Mum I went through a similar thing a year ago when it became clear that my Mum was not safe to be left at home for long periods of time, I only worked 17 hours a weeks and my husband does shifts so the times were not that often but the strain was terrible.

    Good luck in whatever your family tries to do, your Mum is lucky having you fighting her corner!

    geraldine
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Emma

    there are times that you just have to say what you feel and blow the consequences, so good on you for having written whatever you did!

    I honestly don't know which period of this ghastly illness is worse. I think that, no matter how bad things were, or how much worse they become, the uncertaintly of having someone you know not to be well, but who is on their own is as bad as it gets. Feeling totally helpless is dreadful, and that is usually accompanied by feeling responsible, guilty, etc.

    The key thing is to work as fast as the system will allow to get your Nan some assistance. This seems to have an element of postcode to it. In my area, help was absolutely useless [totally lacking], until my wife went into full time funded care. Then it was amazingly helpful. Shame there was no balance.

    There is no Good Care Guide to show how things vary from region to region, unfortunately.

    Best wishes.
    Bruce

    PS the psychiatrist Jan saw chain-smoked during our sessions and once had the case notes of a completely different person to refer to when we were with him. I think he needed help more than we did! Sometimes you just have to laugh, despite the direness of the situation
     
  6. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    Thanks for your advice Geraldine, my Mum read your reply and I got a pat on the head for being a good daughter too!

    We have an assessment coming up with the Psychiatrist and the district nurse is meant to be visiting soon (although we've been through all this before years ago when it first started- we've just never had a diagnosis or any help!). I think my Mum's hoping that we'll get some help and a diagnosis this time. We all need a break!

    My parents both work full-time and it's very rare that they actually having the time/energy to take my Nan out, so for the most part she's indoors, although she doesn't seem to mind this. I know my mum feels guilty that she's neglecting my Nan's social needs, as she's still very chatty.

    I think that if the help from the GP's/social services falls through again, I will try to get some help from Crossroads as you suggest or maybe the Winged Fellowship.
     
  7. C.Waring

    C.Waring Registered User

    Feb 6, 2004
    21
    Lancashire(East)
    Crossroads

    Hi emma,
    I sympathise with all your problems and also recognise them too. i think we all know the hopelessness of this illness and the lack of support seems fairly similar wherever you live. I must however recommend crossroads they have been a life line to me of late. I had reached the stage whre my husband could not be left at home all day but at the same time I am not in a position to give up work so I was worried how on earth I was going to cope. Then our CPN suggested crossroads to me and helped me to get in touch (Jims CPN is also fantastic I have to frequently remind myself she is only the same age as my younger daughter as she gives me so much support, I've come to rely on her alot.) Crossroads now come to the house evry morning so I can get out to work and spend different amounts of time with Jim each day. I have 4 regular carers 3 female and 1 male and they are lovely people, they have been supporting me since December and now I can't imagine how I managed without. I do recommend them
    Carole
     
  8. adele78

    adele78 Registered User

    Dec 22, 2003
    20
    manchester
    Hi Emma

    I have not logged on for a while to this site. I have just read your letter and when my mother was in the early stages of AD and dad was finding it hard to cope, she started to go to a nearby residential home during the day and this gave dad a rest. Eventually, when she got worse, she would go in for respite care - weekends at first then sometimes for a week. It certainly helped dad cope better. Perhaps it might help your mum if your nan could go into somewhere like this daily.

    Adele
     
  9. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Great advise so far...
    I can only add, us, see what your local Alzheimer's Society branch has to offer.
    Day centres, inlcuding those at care homes may offer day care facilities, as Adele as suggested, luncheon clubs, Age Concern and other voluntary organisations.
     
  10. C.Waring

    C.Waring Registered User

    Feb 6, 2004
    21
    Lancashire(East)
    Hi Angela,
    Read your reply on help and my thoughts were "if Only" Sadly where I am we have only just last Nov got an official Alzheimers branch but as yet I don't think they have anything set up and definitely nothing for early onset where the carer is still needing to work. Infact last December I raised a large sum of money selling homemade christmas cards, I contacted the NW branch in Cheshire and as yet have had no reply so I am still hoding the money I raised I can't believe I've had no reply. I only wished I was living in an area where there were day cenres and branches and anyhting at all that was age appropriate.
    Carole
     
  11. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Hi Carole
    Try your social services dept (this is the point where everyone groans!)But...
    They have been allocataed monies form the carers special grant for such services as it seems you require. If you havent, or even if you have, give them a shout and let me know.
     
  12. C.Waring

    C.Waring Registered User

    Feb 6, 2004
    21
    Lancashire(East)
    social services

    Thanks Angela, what a speedy reply. Jim does have a social worker and they have helped with setting up some day care while I go to work and also as I said Crossroads have been superb, I think it's really the society them selves I'm dissappointed with locally, nationally I think they do a great job and it seems they have good centres etc but we seem to have nothing here and I did want my hard earned cash to be used locally to raise awareness or to set up some thing for younger sufferers and carers but as I say I've heard nothing at all which amazes me. It does sound as if I'm moaning I'm not I just wish we had something and yet I know I'm not in a position to give time to set anything up as sometimes it's as much as I can do to survive each hectic and frustrating day. This site really does help not just for company, comfort and conversation but also to let off steam a little!!
    Carole
     

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