1. Liz57

    Liz57 Registered User

    Dec 22, 2013
    When I read people's posts here about needing to wait for a crisis before getting help or support, I'm not sure exactly what that means. I don't want to pry into anyone's life and I appreciate someone is going to say "when it happens, you'll know" but I suppose I'm asking, how bad do things have to get before there's any help?
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Liz

    A crisis is an unmanageable situation, either damaging to the one with dementia or damaging to the carer, a time when everything falls apart.

    The reason a crisis situation is what makes most people realise life just cannot go on as it is , is because the majority of carers either believe they must manage at all costs or feel whatever is happening in their lives is a blip and may be better tomorrow.
    There are also promises made and feelings of guilt.

    We all have our own breaking point and in my opinion it is best to avoid getting to this stage if it is at all possible. It helps no one.
  3. Liz57

    Liz57 Registered User

    Dec 22, 2013
    Thank you.

    Got there a while back then. Not coping is a luxury I've not been able to afford.
  4. marionq

    marionq Registered User

    Apr 24, 2013
    Liz, my sister cared for her husband with vas d for many years without complaint but I guess much silent suffering. One morning she found she physically could not get out of bed - true carer breakdown - she phoned her daughter who came immediately and arranged emergency care. Her husband was then assessed as needing permanent care.

    My sister slept for about three days as she recovered from years of caring and lack of sleep.
  5. Beate

    Beate Registered User

    May 21, 2014
    In my case it was finding that OH was too trusting of strangers and giving out info on the phone or door, making appointments with sales people for things he didn't need that prompted me to get an emergency assessment and finally get the help he needed.
  6. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    Auckland...... New Zealand
    As Mum with AD still lives at home witn Dad with cognitive impairment who can neither fully comprehend Mums Alzheimers or use coping strategies, for us a crisis would be if Mum started wandering, or started asking to go home, or incontinence, or falls.
    Even with me living in front of them and supervising every day, Dad could not cope one bit with any of these, no matter how much support.
  7. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    #7 Ann Mac, Feb 10, 2015
    Last edited: Feb 10, 2015
    We were told, many times, by the SW Mil had when she lived in her own house, that no matter how worried we were, they could do nothing till there was a 'crisis' - we desperately wanted them to insist that Mil accepted more than 1 care call a day, as we were making the 22 mile round journey at least 4 times a week, usually more, and were really worried about her safety on the days when the carer called in for only 15 minutes in the morning and we just couldn't get down there.

    Mil being ripped off repeatedly by cold callers wasn't a crisis, apparently - even though we suspected that she had been conned out of several thouand pounds by being talked into paying for goods and services that she clearly didn't need - or even want.

    Mil falling several times, twice resulting in her breaking bones, wasn't a crisis, apparently.

    Mil over dosing on medication, or not taking it at all and becomming ill as a result of either instance wasn't a crisis - because we stepped in and she didn't end up actually hospitalised. Her missing several important hospital appointments and then being noified that she was being removed from various consultants lists wasn't a crisis either (because more by luck than judgement, again, we found out and stepped in and sorted it).

    Mil not storing food correctly and probably eating things that were out of date/off wasn't a crisis, either.

    Mil losing a drastic amount of weight in a short time, due to both stomach upsets caused by bad food and by her clearly no longer knowing how to use microwave or cooker wasn't a crisis.

    Even when Mil took to phoning the police at 2a.m. to report that her (deceased) husband was missing and then she went walking the streets at that time to look for him, a social worker pointed out that she had 'got home safely' and therefore it wasn't a 'crisis' either.

    I think we realised that Mil would have to be very seriously injured or ill before that particular LA felt that a situation was a 'crisis' and actually did anything to try and ensure her safety - and we were not prepared to wait for that to happen, so basically rode rough shod over Mils objections and moved her in with us. Looking back, I suspect that we were on shakey ground making that decision without official backing/approval, as Mil certainly didn't want it, but I honestly don't think that we had much choice, given that particular Social Services attitude as to what constitutes a 'crisis' :(
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Mum lived at home and was obviously not coping and I was not able to as much as I would have liked as I work and have a disabled husband. I begged her GP and SS for help, but SS phoned mum up and asked her about what help she needed. Predictably, mum told them that she did her own shopping, cooking, cleaning and housework. In reality she was doing none of this. She was not eating, or drinking (I dont think she could remember how to make a cup of coffee), she was doing no housework, the only food coming in was when someone did her shopping for her, she was not washing or changing her clothes and she had started to wander the streets at night knocking on neighbours doors in the wee small hours because she was lost.
    SS did not check up on any of this, but took her at her word and crossed her off their books. I knew it would take a crises for her to get the support she needed.

    The crises took the form of a TIA which resulted in her being taken to hospital. She was found to be severely dehydrated and underweight and, although she made full recovery from the TIA her dementia problems were very apparent whilst in hospital and she went straight from there to a CH.
  9. Liz57

    Liz57 Registered User

    Dec 22, 2013
    Ann I've read alot of your posts and have nothing but admiration for how you manage. I'm staggered by your patience and caring which goes way beyond what I think I can cope with.

    I suspect we live with similar local authorities as even when I'd got to the point of seriously considering taking my own life, I couldn't get any help although briefly a doctor did come out and prescribed an anti depressant for mum which helped with some of her more challenging behaviour for a short while. As time has gone on, I've become more and more sucked into caring for her as her ability to manage on her own has left her. Don't get me wrong, I love my mum and would do whatever I can for her but with my own home (she lives a few hundred yards away), job(s), mortgage and dogs to consider, I'm realising that I can't meet all her needs and have no life at all of my own. She hates the times she is on her own and sits dialing my home telephone number for hours on end. Even when I'm there and able to answer, it can only be a few minutes before she's on the phone again, often in tears and desperately in need of some company and support, despite me spending 3 - 4 hours a day with her before and after work. To me, this is a crisis but to the local authority, memory clinic and GP, it doesn't warrant any help or support for her or me, presumably because the first question they ask is "is she self funding", which she would be if I could persuade her she can afford help.

    I'm tackling this slowly on my own by taking a day off work a week with my employers permission (I make up the time by working late the remainder of the week) but this enables me to progress things like the POA, day care, medical appointments for mum, trying to find new ways of connecting with her and supporting her and ultimately to research care homes. I worry a huge amount about what would happen if anything happened to me. When I had a bump in the car recently (nothing serious but turned me in to a blubbering wreck at the time), I had nightmares about what would have happened to mum if I'd been injured.

    Sorry this has turned into a bit of a rant. Perhaps I just needed to off load a bit!
  10. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Hiya Liz,

    It maddens me when I read how so many carers are in a similar situation to you, struggling, asking for help and being fobbed off with the 'having to wait for a crisis'. We were able to take the action of moving Mil in with us - and now we are in a different county, have to say the attitude of those profesionals we have to deal with (SW, CPN, etc) is a heck of a lot more helpful - but for those that don't have that option the lack of help is dreadful in far too many instances :( I dread to think what might have happened to Mil (and to our sanity) if we hadn't been able to do what we did. There had been several 'close shaves' in terms of her health and safety and aside from the worry and stress of dealing with that, we had just started to get the repeat phone calls, often with her being angry and upset because she thought that she hadn't seen anyone 'for days'.

    One thing that I think still holds true is that those that shout the loudest tend to get the help. Its wrong, but its the way it is :( Working as a carer for many years, time and again, those families who were pretty clued up on what they were entitled to and who were prepared to let the authorities know that, were the ones who got the most help for their loved ones. I think you have to start from the stance that YOU have no legal obligation to provide all your Mums care, but that the authorities DO have a duty of care to ensure she is safe and having her needs met.

    I would be putting together a detailed letter stating the situation, the dangers (not just to your Mum, but to your own health), detailing the lack of support so far and stating that due to the detremental impact on your life/health you will no longer be able to supply the level of support that you have been giving. Make it clear that you know that whilst you have no legal obligation to provide care for a vulnerable adult, you also know that they DO!. Make it clear that should support not be forthcoming you will hold them responsible - demand an assessment and let them know that should anything happen to Mum or you in the meantime, you will be making it known that its down to them and their lack of response and support, that you will hold them responsible. Send it to Mum's GP, the memory clinic, Adult services for the Elderly at the LA - anyone and everyone that is appropriate and if possible, get the contact names and details for senior managers within whatever structure and include them in the mailing . If there is no response within a week/10 days, follow it up with phone calls, sending the letter again with a cover note stating how long its been and that you have had no response. See if your local branch of the AZ society can offer any support in getting them to step up to the mark, try age concern, even your Mum's MP/Councillor. The more noise you make, the more insistent you are, the more likely they are to take notice!

    Its a lot easier to type this that to do it - its probably the last thing you feel like taking on, but sadly I often think that its the only way to get help where some L.A's are concerned. The alternative is struggle on and eventually crash - which is so unfair to you:(
  11. leicester61

    leicester61 Registered User

    Aug 26, 2012
    Just wanted to say how right you are. My OH was diagnosed aged 52 nearly 3 yrs ago. I went down the softly softly route at the begining and got no help/support. Eventually I had enough and started using my ( rather loud when it has to be) mouth, I told everyone that I spoke to that if I did not get the help/support required then I would be talking to my local MP, the media, twitter and name and shame them, it was amazing how quickly I was then responded too. Dont get me wrong it is not the way you should have to be but what options do ' they ' leave us with. Its also amazing at what information some of these organisations, LA do NOT have or simply have not been given the correct training. I always follow up with letters/emails and keep cpoys and I always get a name. Sometimes there is just not anything that can be done but I do not give up without a fight. I also make sure they hear me by saying things like ' Listen this is my husband, a young man whos worked hard all his life and now he and me need some help/support, are you telling me that that is not available' I also always ask if the call is being recorded and when they say yes i say Good there can be no misunderstandings then can there. Sorry if I sound bolshy but I get so worked up about how hard it is for carers and how little help there is out there for them.
    Sorry for the rant too
  12. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    Hi!..im a carer for my 76 yr old dad who has been my mums carer for 40 yrs..he now has dlb..dementia with lewy bodies...hes also diabetic amongst other issues.

    I thought id share some of my thoughts on crisis!

    crisis is the defining moment when the endless red tape and paperwork actually helps a person with a diagnosis of dementia when it hasnt been able to for years.

    Crisis is the point where youve saved the goverment millions by doing the caring by yourself and wake up one day and cant cope a minute longer..

    Crisis is when the ss say that their service simply cant run to fit the constantly changing types of dementia....and make no apologies for it!

    Crisis is when a social worker is allocated to a person..with a diagnosis of dementia and they have no knowledge of dementia or services to help...

    Crisis is one word to describe whats happening to our ss teams..

    Crisis is what britain will be in if more isnt done at grass roots to help carers and those with a diagnosis or waiting for one ..or undiagnosed..and treat the word dementia as it does other diseases....

    Crisis is a word that is often used not when we are at our wits end .to describe our situation ..but to defend why so many people are not getting the help or the respect they deserve...despite the care act ..human rights...duty of care or mental health act..

    Thank tp for giving us a voice..so that we can speak for those that cant!

    Sent from my GT-I9505 using Talking Point mobile app
  13. chick1962

    chick1962 Registered User

    Apr 3, 2014
    near Folkestone
    Omg I do agree with you!!! I wish I could have put it into words like you just did. Thank you x

    Sent from my iPhone using Talking Point
  14. Isabella

    Isabella Registered User

    Jan 4, 2014
    Ann Mac, your story sounds so much like mine. I thought I was losing my mind that I was surrounded by these people who said my mum was fully independent even though she was starting fires, eating mouldy food, locking herslef in the house or out the house, wandering in winter without coat or shoes, ending up in A&E on my occasions (and most of the time we don't even know how she got there), and SS still said she was fine. They treated me like some kind of nutcase because I wouldn't stop bothering them with my concerns. I remember the care broker telling me sternly that my mum was not in danger and that living alone was not a social care need. How my mum survived I don't know. I don't know how I did either. Only luck kept her alive long enough to move her into a care home. I don't believe she would have lived much more than a few weeks if she'd stayed at home. Afterwards that same care broker called me and said she realised she'd been wrong about my mum's needs. I dont remember what I said, but I know I shouted at her on the phone, right in the middle of the office. I wonder how these SS people would feel if it was their loved ones on the receiving end of this cruel 'wait and see' approach to care.

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