1. rah99

    rah99 Registered User

    Jan 20, 2005
    7
    St. Helens, Merseyside
    Hi everybody,

    I'm new here, but I've been caring for my Mum (81) for several years - feels like forever, I'm sure you all know what I mean.

    Until last week Mum was going to a local daycare centre twice a week. A few months ago they told me that she was becoming increasingly aggressive.

    Last week I got a call from her social worker telling me that the daycare centre could no longer cope with her behaviour - apparently she was being very uncooperative when they tried to change her 'nappy' (what else can you call them?) just before she was due to come home. I only rarely have a problem changing her, so I can't see any reason why 'professionals' should have such difficulty.

    She's only occasionally aggressive when she's here, I'd guess that she feels thwarted when they try to redirect her behaviour at the centre.
    She also wanders around, eating just about anything she can get her hands on - leaves from potted plants etc.

    As a result of this, I'm now left without any daycare - the only relief I currently have is a Crossroads carer one Friday a week.

    It seems that my only options now are rolling respite (1 week in 6), and short term care at the Stewart day hospital (max 8 weeks). I'm trying to get extra sitting from Crossroads but they are overstretched as it is.

    I don't know how long I can carry on like this, it's only been a week so far, but it's taking its toll already. I dread to think what state I'll be in after a month.

    Where do I go from here? I feel rather let down by Social Services and the NHS. Is that really the best they can do?

    I don't want Mum to go into a home yet a while - I've heard enough horror stories to want to keep her at home as long as possible. I'd rather not have her sectioned either.

    Basically, I feel abandoned by the system, and I'm starting to get worried about my own mental state. I'm just about holding things together at the moment, but I don't know how long I'll be able to cope.
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Rah, welcome to TP, I hope you will find us a support to you. We all have similar tales to tell and so we muddle through trying to help each other on this nightmare of a journey. You say your Mum can no longer go to the day centre because they are finding her a handful. Can I ask, is this a day care centre for the elderly? My reason is, my own Mum got "chucked out" of the Age Concern centre for the elderly when she became a handful, but her SW managed to get her into another one for people with dementia quite soon after. You mention rolling respite, is this in a home for dementia sufferers, do they, or do they know, of a day care centre for dementia sufferers? Have you got in touch with your nearest local group of the Alzheimers Association? They may be able to help you find alternative day care. If you don't know how to contact them, I am sure Nada will point you in the right direction in the morning. Sorry to hear things are so tough right now for you, please get on line and talk to us when ever you can. Love She. XX
     
  3. Jude

    Jude Registered User

    Dear Rah,

    Welcome to TP from me too.

    When my parents were first diagnosed with AD they began attending a Day Care Centre once a week as well. This was a godsend because it was the only time off that I got, since I was caring for them alone. In the early days I had not realised that such organisations as Crossroads existed.

    My parents attended Day Care for almost 18 months - and hated every minute of it! Eventually they kicked up such a fuss about going that they had to be withdrawn. It was a total disaster for me at the time because that free time was really essential for me. I know exactly how you are feeling....!

    As Sheila says, do contact your local Altz Branch as they very well may have a day care centre in your area with staff who are specially trained to care for dementia sufferers.

    Do you have any family members or neighbours who could assist?

    There will also be private care agencies operating in your area. I know that these can be expensive at around 16 pounds an hour, but if you can possibly afford it then it is money well spent to gain some peace.

    If all else fails, then rolling respite would be the way to go. At least you will be able to plan your breaks and the knowledge that you have a holiday goal every six weeks will help a lot, especially if one of the charity agencies can give you extra hours as well. In fact, a combination of both schemes would really take the pressure off.

    One of the most important aspects of caring is respite for the carer. If you fall ill or start to become unravelled, then you can't do a proper job of caring. We all have to have regular breaks and that includes time to sleep as well.

    The whole question of funded care for AD sufferers is an ongoing gripe with all of us on the Forum. The SS and NHS currently provide little support unfortunately. They seem to feel that we should be happy as unpaid Govt workers.... but then they don't work 24/7 with no time off to relax or sleep do they?

    Good luck and please do keep in touch.

    Best wishes,

    Jude
     
  4. rah99

    rah99 Registered User

    Jan 20, 2005
    7
    St. Helens, Merseyside
    Thanks both of you.

    I'll try to get on to the local AS branch next week.

    I'm an only child, and the nearest family member is Mum's cousin who lives in Somerset.

    I don't think I could afford private care at £16 an hour.

    In some ways I'm lucky - Mum usually sleeps right through the night so I can generally relax then without worrying too much.
     
  5. Jude

    Jude Registered User

    Dear Rah,

    One of the positive benefits of being an only child is that you don't have to deal with unhelpful siblings. Still, it's a lot to cope with alone.

    Paying care fees always irks me - especially when it should be funded by the NHS, since my parents have contributed all their lives for such services, as has your mother. However, I just had to do so because having both parents as AD sufferers was sending me bonkers! I was literally running around in circles and getting no sleep at all.

    I really hope you can get something sorted soon and have a well deserved break.

    Jude
     
  6. rah99

    rah99 Registered User

    Jan 20, 2005
    7
    St. Helens, Merseyside
    Coping with one AD sufferer is enough, I know I wouldn't be able to cope with two!

    My SW is trying to get me a weekend respite break next w/e which will help a bit.
     
  7. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Rah, glad to hear your SW is trying to help. Just keep pushing, it's the only way, if you don't tell them how it is they assume you are coping etc. Also, if the SW see's that you are having problems, she may be able to ask Crossroads to do a bit more, perhaps a second afternoon or an evening. They don't charge the full wack because it's a caring for the carers charity or something like that. Hope you get that weekend break, take care, love She. XX
     
  8. Jude

    Jude Registered User

    Dear Rob,

    Great news about the respite break. Any further news about the rolling respite idea? It's a good idea to book as many breaks ahead as you can because it gives you reward goals to look forward to and also helps with planning your life a little more.

    When you do have the breaks, make sure that you do things that You enjoy personally and try and avoid the compunction to rush around cleaning the house or doing boring stuff like going to the supermarket.

    I found that always being a carer meant that I got out of touch with caring for myself. Respite means being 'self-ish' and treating yourself.

    Jude
     
  9. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi all, What is rolling respite? i have been told by S/S i can have respite for mum when i feel i need it but there was no mention of this.storm
     
  10. rah99

    rah99 Registered User

    Jan 20, 2005
    7
    St. Helens, Merseyside
    It's just regularly booked respite breaks, so you can plan ahead. I can apparently have 1 week in 6.

    Just found out that I definitely have a short respite break on Saturday until Tuesday :)
     
  11. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Dear Storm

    No one called it rolling respite to me but that is what I get, when the SW comes tomorrow to take Fred in for respite she will book the next lot of respite. I have one week booked in March and two in May (for the Peru trip) she likes to book the next six or even more months ahead.

    Rob I’m glad you are getting a break I hope you make the most of it.

    Anne
     
  12. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    hi all, glad to hear you are getting a break Rob it sounds like a dream one week in six! but the problem with me is just taking the first step its a case of not wanting to rock the boat.storm
     
  13. rah99

    rah99 Registered User

    Jan 20, 2005
    7
    St. Helens, Merseyside
    Mum has been to this place for respite before, and seems to enjoy it.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.