1. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    I've heard 'carer's breakdown ' mentioned on TP in several posts and it's got me thinking!

    How do carers manage to get respite for themselves if they have no family to help out?

    What help is there for those people?

    With dementia being quite a long drawn out illness, I just wondered how people coped with it all.
  2. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    North East Lincs
    That is a very interesting question Tiller Girl. I have to admit that sorting out appropriate respite is something I have not been able to achieve.
  3. balloo

    balloo Registered User

    Sep 21, 2013

    we are nearly 3 years careering and will be first 1 day away together as a couple we have sitter doing 6 hrs and then my daughter over night . we do separate nights away. in northants respite does not have any you can book in advance
  4. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Same here balloo :( My mum is in hospital now, waiting for residential care, but in all the years prior to that, I was unable to access respite. From social services, I got a combination of no reply, wait your turn (!) and 'mum doesn't meet the criteria'. When I tried to book privately, homes were similarly disinterested. Mum's own GP told me we'd have to wait for a crisis and a hospital admission, before anyone did anything. Sadly he was right :(

    We should all keep asking and identifying the need though.....the lack of respite is a national disgrace :mad:

    All the best to you, Tiller Girl :)

    Lindy xx
  5. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    I don't even dare tell you, Tillergirl. I'm one of those people. What happened to us should never happen to anyone. All I know is - it does.

    Be careful if you are also alone. Stomp your feet if it helps.
  6. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    What happened in my case when carer breakdown happened to me

    Doctor said mum was ok only had mci and it wasn't bad

    Tried to get a social worker or cpn involved with my concerns about mum but no social worker appeared

    CPN arrived on the scene, not sure who organised their visit all I know is that it wasn't me

    I wasn't at the first visit from CPN, didn't know they were coming.... Letter arrived for mum from CPN and that's when the phone calls from mum to me, any one she could dial, started.... (She then constantly phoned people until she went into care) Mum Very angry at CPN comments

    I plodded on for a year, travelling over 70 miles to mums house, sorting out her latest issues... Her Not eating, not washing... Etc etc then travelling 70 miles back home to sort out issues at home. Sometimes I visited mum 2 or 3 times in the week to take her to appointments - no joined up thinking so went to the hospital/doctors 3 days in a row for different things....

    Doctor still insistent mum ok and didn't need CPN. Cue CPN discharging mum.

    My guilt monster was telling me I could cope. My health was telling me I was crashing.

    I carried on like this for many many months. Then mum started having hallucinations. Cue me calling CPN. CPN visited mum. Cue mum starting to wander at night. not sure if the timing, but it feels like that quickly.

    Mum wandered three nights in a row one week. Neighbours kept her safe at 4am at their house the last time she had a midnight stroll. Despite mum trying to escape all the time, until I could get there.

    Emergency respite was arranged for 4 weeks, because I rang CPN sobbing my heart out saying I couldn't do this any more. I couldn't keep mum safe.

    Mums doctor where she lived, as far as I'm aware, is still convinced there wasn't much wrong with mum but we didn't have to deal with him again as we moved mum out of his area within 8 weeks of mum going into respite.

    I couldn't stop crying and I couldn't sleep. I couldn't think. I couldn't function. It was then that I fully recognised that I had broken. Once mum was moved into a really good care home, I have slowly managed to pull myself out of that deep dark depression. I still have moments when I feel as if I'm about to fall in that dark hole... "Silly" things can trigger it, But it's getting less and less. I feel I'm nearly mended now, but it's taken 2 long years

    If you are feeling at breaking point and are desperate for respite..... Do your utmost not to have carers breakdown.

    Shout loud. Continually call the social worker, make a fuss. Cry. Cry loud sobs and say you can't cope. You need a break.

    In our case, respite turned into full time care as she was assessed not to be safe living on her own with carers coming in as we had tried that.....

    and she's self funding.....

    Don't want to imagine what the scenario for me would have been if LA were paying/delaying.

    Respite doesn't have to lead to full time care if you truly feel you can cope after a break. For some, just having a chance to have some time without the 24/7 responsibility is enough to keep going

    Hugs xx

    Sent from my iPhone using Talking Point
  7. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Oh 2jays ....so glad you're feeling better most of the time :)

    I think I got close to your position (really very close), but mum went into hospital in the nick of time for me. I had got to the point of crying and shouting at nursing staff, and I'm the quietest person normally.

    Keep strong :)

    Hugs to you too

    Lindy xxx
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    Terrible to read that you can not assess a carers’ assessments from social services to get respite

    I had full carers’ assessments from social services
    Which included mum going to care home respite few times a year.
    Maybe its still depended on what your Post code is

    Mind you saying I still felt like I was living in a breaking down state of mind, even with a carers assessments pack!

    Sometimes you don't know how strong you are untill you have no choice but to be strong mentally .

    Trying ringing carers UK
  9. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    I broke last year got a month off work.......but see the CPN's and social workers, if nothing happens they put you/mum at bottom of list/discharge you and you have to go through it all again.............waiting right now for reassessment for mater
  10. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    2Jays, what a heartbreaking story. Being fobbed off seems to still be the order of the day :(
  11. Spamar

    Spamar Registered User

    Oct 5, 2013
    Hi, Tiller Girl. Carers breakdown so well described by 2Jays. In my case, looked after OH. After several years of no family help 2 of his children came to look after him for 2 nights. It opened their eyes, I can tell you!
    Almost immediately after I cracked completely and, bring self funding, put him in a home for 2weeks. 6 months later had to do it again. 3 months later he went in again but, owing to an upset tummy ( mine) and chest infection ( his), respite was 5 weeks that turned into permanent care. ( he died less than 10 weeks later). If you can't self fund, shout long and loud and keep shouting. I had a lot of help from OT at daycare who took some shortcuts and put the DIST ( Dementia Intensive Support Team ( I think)) in touch and they helped a lot. Though I know DIST are not available in all areas.
    At the early stage, get your relative, and main carer known to the people that matter, so when something happens you will have people to go to who know what's available in your area.
  12. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    Wow! What an eye opener !

    Thank you for being so honest about things.

    I only really have 2 cases of dementia to base my judgements on really. One was my mother but my father wouldn't have any respite and just had people in to help. The other was my friend's mother and she was 'eventually' given weekend respite but my friend is convinced that She only had this because she had two young children to cope with as well as her mother.

    It's sad isn't it that we have crèches and nurseries for children, dog kennels and Catteries for our pets, house sitters for our homes but nothing for our elderly relatives!

    I can't believe that in the 21st century we are having to care for our loved ones 24/7 without the support we should have. Even a few days respite every few months would be beneficial to some people I'm sure.

    Just to let you know I was only posing the question. I have my children to help me out and if I didnt ......I can shout very loudly and for a very long time !!

    I'm going to do a bit more research. If I find out anything beneficial I'll let you know.
  13. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    Tiller Girl, I am incredibly glad you can call for help when you need it. I've often seen people ask how those of us who have no one how we cope. Some here have been very forthright. I'm sorry I wasn't. I never crack open too far, usually because I'll never get over the trauma caused me by those who should not have dared to do it, plus, I also wouldn't want for anyone to be as scared as I have been. Things got so bad for me that I became too scared to ask for help in the end. It did me a lot of damage.

    Things have been easier the last four months, but, as I expected, it took a crisis for things to move in the right direction. I can only hope that never happens to you.

    Thanks for starting this thread. It's been enlightening. God bless you, xxx
  14. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    Big hug for you 2jays xx
  15. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    North East Lincs
    I agree with Chuggs this is a very important thread. I had to threaten to abandon my O H before they moved things here. Then S S struggled to set up satisfactory arrangements for me to have a few days away. The arrangements they made were so poor that I came home after a night away.

    It is well documented that caring shortens lives of carers. It not surprising when you consider we are on duty 24/7 and there is little respite available for any of us.
  16. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    I'm glad I started this thread.

    I think we've all benefitted from it in one way or another. Again I'd like to thank you all for your honesty and sharing your experiences with us.

    For me it's made me realise that perhaps, at the moment, things are manageable. My OH still has a little bit of independence albeit not much. We're still able to enjoy some things in life but perhaps in a slightly different way than before. I'm learning to take it one day at a time instead of trying to plan for the future when I have no idea what the future holds.

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