1. Goingbananas!

    Goingbananas! New member

    Sep 29, 2018
    So we've got to the stage whereby we are struggling. Every visit there's a new problem to solve.... and then insecurity hit.
    Mum has lived on her own since dad died 8yrs ago. She's had twice daily carers for a year now. She's ditzy, forgetful and so repetative. Recently, she went a wandering at 11pm and got bought home eventually by ambulance after locking herself out. Next morning she was off again. This time taking refuge with a neighbour for 2 hrs til family arrived to let her back in. We warned her not to go out at night in the dark. It's not safe we told her. Almost immediately she's scared, lonely and won't be left alone. Crying and creating and throwing herself in the sofa exclaiming she will commit suicide unless she can live with one of us "children" of 53, 51 and 44. It's so hard to witness. ATM We're taking it in turns to be with her 24/7 but it can't go on. She won't go into a CH. I've told SS that we cannot keep on like it. It's too much. She lives 60 miles away. We have jobs and children at school. No space to have her move in. We're in despair. I rang social services. DUTY SW informed me today that if I withdrew my care, they would have to "put mum in emergency care" It would be awful for her. Scary and I shouldn't do it. Wait for the the useless review, that we can't give you a date for,!
    So what I need is clarification. What will actually happen if I ring and say. "Your responsibility" to the council. In easy steps please
  2. CrestFallen

    CrestFallen Registered User

    Sep 12, 2018
    I'm sorry to here your plight and I hope you get some answers. I posted a very similar thread two weeks ago as I am on my own in different circumstances but struggling with managing all of this with no sound advise or anyone giving a stuff about my welfare. I don't no the consequences of my actions or in action. All I do know is I've been told that if you tell the LA to take over they will seize all of her assets and have know obligation I believe to tell you anything. Which in my case is bit more tricky as in my situation I lived and cared for mum in her house, and recently i had move her into full time care. I hope you get some answers on here I look forward to reading them if you do and all the best..
  3. marionq

    marionq Registered User

    Apr 24, 2013
    Does your Mum have any assets ie savings, investments or own her own house. If these amount to more than £23,500 she will have to pay for her own care. I would start by looking at care homes in your area within the price bracket allowed by the local authority. Find one you can tolerate and see if they will take her at least until her assessment is settled. Use her funds if she has them to get her into care while you all sort yourselves out with work and children.

    If she has no funds tell the LA you have found a place and as a matter of urgency they will have to deal with the matter as she is in an unsafe situation.
  4. Theresalwaystomorrow

    Theresalwaystomorrow Registered User

    Dec 23, 2017
    Money money money! Isent it sad that these situations always comes back to money.
    In answer to OP question, no family are not responsible for her mums safety or future so first step is SS.
    Hopefully if they have been clever assets have been brought down below the self assessment rate anyway because going forward that’s what everybody will be doing but the plain answer is if family can’t help SS will need to be called in
    Hope you get this sorted soon, we are all here to share this journey with you.
  5. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    Good morning Ty,

    Sorry to read about your situation. Dementia, even when mild, is stressful with the repetition, confusion and hygiene issues. Emotional blackmail is a whole new level of stress - from your mum and from SS.

    You can tell your mum as much as you like what behaviour would be reasonable. However, with dementia, memory is the issue. She can't remember - not that she does not want to - she can't and this is where the stress spirals out of control. If you get on well with the neighbours tell them to phone SS each time mum goes round. Having witnesses other than family tends to give more weight to the situation for SS.

    It is also good that an ambulance was involved as they will have records, They should also pass on any concerns so you have an additional source of evidence.

    You can walk away and phone the SS to say that it has all got too much for you and it is now in their lap. It is called a crisis. The SS then need to deal with it. The situation for the 3 of you is, realistically, untenable. But frankly, they may not deal with your mum in a way you will be happy with. It would be wise to get your ducks up in a row so that you minimise wriggle room

    Some first steps to take:
    • See if you can get your mum to sign Power of Attorney for the 3 of you to have POA for Health and Welfare (some GPS and Consultants will exclude you should you not have it) and POA for Finance.
    • Write to your mum's GP and explain the situation with examples and an idea of the timeline. Also, ask them to assess your mum. Sometimes a good dose of Vitamins can make a big difference. But go through the steps.
    • If you can fit it in get AA (Attendance Allowance) sorted for your mum. This can be the threshold for a lot of other things and is an alert to SS that this is a vulnerable person. The contacts below will be able to help you get this sorted.
    • What would be a good step is to ask for an assessment of your mum from SS. I would strongly advise that one of you is there when that happens as your mum will probably tell them she is fine and that the 3 of you will be sorting things by doing a home visit.
    However, could I suggest some contact numbers that may very well turn out to be your saviours?

    Your mum's local Alzheimers will know how the system works in the area. They are also a really good place to get information and to offload. It really sounds as though it has all got too much for you.

    Alzheimers Association

    0300 222 11 22
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm

    Another really good organisation is Admiral Nurses who have loads of good down to earth ideas on how to manage difficult situations.

    Admiral Nurses Dementia Helpline:
    0800 888 6678

    It is clear from your post that the situation has got too much. If you can get the above organised (yes, it does add to the stress initially) will really help in starting to get the correct support in place and start taking the stress off you. Once things are in place your mum will gradually get reassured and will start to calm down.

    When we sorted mother out it was stressful for 3 years. Once she settled in her retirement home she was very happy. Part of it was she was lonely. Another part was that a structure had been put in place and that she found reassuring.

    Please, offload as much as you need and want on here. There is a wealth of experience and guidance available here.

    Best wishes.
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I think that however this plays out, you are looking at a care home as your mum is no longer safe on her own. I know you dont want this, but it may not be as awful as you think. The "emergency care" that SS are talking about is probably emergency respite and, actually, I think it would be a good idea to go for this. It will give you a breathing space to work out something more permanent. If you did just walk away then SS would indeed place her in a care home and apply to the Court of Protection to administer her finances. At least this way you will have some input.
  7. Goingbananas!

    Goingbananas! New member

    Sep 29, 2018
    Thanks all. Mum owns a property. They released equity but there will still will be a substantial amount. We've got POA, SW, ATTENDANCE ALLOWANCE & EMERGENCY REVIEW IMMINENT.
    she's now back at my sisters, confused as to where she is, how she got there, is she going in a home. Crying and insecure. It's heartbreaking, the emotional blackmail is killing me. She won't go into a home without kicking and screaming. She's obsessed with it. We feel so guilty. Due to the property we've no idea where to start.
    Also, due to her determination at not wanting to go into a CH, I'm worried they will section her if we gi to them and state that we can't deal with it any longer. I don't know what the chances are of this happening, but it is delaying us from admitting defeat and getting help. I honestly don't know how much longer I can manage without help. We all feel the same. It's affecting our children, it's just so impossible
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Very few people with dementia agree to go into a care home, usually you have to use stealth.

    I really do think that you are going to have to get back to Social Services and agree to their emergency placement, as it is actually an emergency, isnt it?
    Please dont worry too much if she gets sectioned - this has happened to many people on this forum all it is seen as a good thing which gets the care that they need.

    Its hard to go through it though when the crisis arrives.
  9. VerityH

    VerityH Registered User

    Aug 21, 2018
    I've been visiting this forum for a month now and your situation is sadly not unusual. I cannot believe that we are all still going through this. With 650 odd MPs, you would think that at least a few of them have gone through this and would be trying to put something in place to deal with this situation. The only wisdom I have found is on this forum. The Alzheimers Soc is brilliant for hosting it - I feel for them too - I phoned them at the end of my tether having done all the things you have done and they confirmed that we had done everything we could do and it was still all up to us to sort out. A very kind and caring lady, but no actual help (not blaming the AS - it's the insane system in this country).

    I wish you the very best of luck. You WILL find a way and things WILL get better, but it just takes time and you will need to get something herbal from the chemist to get you through it (or alcohol, but I'm finding that a bit scary and have just committed to being sober in October - 2 days down and it's a struggle). Keep checking in because people here are so understanding.
  10. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    Hi Ty,

    The panic and demands are wearing. We had 3 years of sorting mother to mover her from her home of 40 years. I would get phone calls 'I'm cold' - my response was well you have switched your heating off. 'How dare you say I have switched my heating off!' 5 hour round trip later I find her thermostat is at 0C. Turn it up and leave. A few weeks later 'I'm cold'

    One of my siblings had the patience of a saint and negotiated with mother over ever scrap (Scrap!) of paper going back over 40 years. It brought 3 of us to our knees healthwise once we had moved her.

    Once moved there were frantic calls 4 times a day and at 11.00pm. However, after 4 months she started to calm down and was very happy. Admittedly, it was an extra assistance retirement home. The extra people and the activities gave mother the routine and reassurance she needed.

    It sounds as though your mum is on a short-term memory loop and it is the dementia speaking not reality - tough though it is to be on the receiving end.

    Canary has given the realistic answer which is your mother probably does need a care home and soon for all your sakes. See what you can find locally that you are happy with then you can feel there is some control. I did a lot of research into care homes. There was one all singing, all dancing and seemed fantastic. A year later it was looking worn at the edges and was failed by CQC (Care Quality commission). The costs got switched up to £100k a year - way, way out of mother's league. And they did not deal with dementia.

    On yet another trawl I found 2 that I was happy with. One was a quirky old house, bit run down in areas, but very switched on staff. The other was part of a chain. Once again, very switched on staff. Both were happy to keep mother and go to the Council charge level once her small pot of money ran out so we would not be looking again. Both were over 50% less than the first one and dealt with dementia in its many forms.

    Your mum may have in her head stories she heard as a child of care home or 'Workhouse' type places which were grim. Part of the panic is dementia, the above may be a bit of it as well.

    Best of luck.
  11. Goingbananas!

    Goingbananas! New member

    Sep 29, 2018
    Thank you all for your advice and input.

    She's declined so quickly, we only got POA in the summer,.. She thought she could manage and wasn t keen on doing it before that. Not actually had legal document back yet.

    I can't bear the thought of her being even more alone, scared and confused. Left with strangers. Altho she does seem better (calmer) with her carers, the paramedics, SW and GP.
  12. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi @Goingbananas!
    my dad has been living in a care home for 3 years now - we moved him because he wandered out in the middle of a cold winter night in only his pjs - we'd been looking after him in his home for years, there with him all day but unable to stay overnight

    I do appreciate your reluctance to move your mum into residential care - do notice what you have written though
    sometimes the distance that comes with being a professional carer, rather than a family member, can help the person being cared for as there is none of the emotional angst we feel for the person to pick up on and react to
    I can honestly say that the 'strangers' who began providing care for my dad quickly became familiar to him and me - all the staff had learned dad's name within days and have stood by him through some challenging times which I would have been unable to cope with on my own - they now not only provide care for dad, they support me and they care about us both
    it is tough making a move neither you nor your parent actively wants but there can come a moment when what needs to be for safety and welfare exceeds any wants
    I am glad you have found TP and can now share your concerns here with folk who understand
  13. canary

    canary Registered User

    Feb 25, 2014
    South coast
    But she wont be alone - she will have company 24/7. Company is what mum needed when she moved into her care home. In her home she was truly on her own for many hours of the day and she was constntly scared and became paranoid. Once she moved to her care home she was never truly alone - if she woke up in the middle of the night there was always people around to talk to, the staff made her tea and toast and if she wanted to she could be up all night in the communal areas where there was always a member of staff in the lounge. I got to know the staff, other residents and their families and they became like an extended family to me. Mum made a friend there - another lady with dementia - and the two of them became inseparable. They were both firmly convinced that they had been friends since childhood and eventually they both passed away within days of each other. Several of the staff came to mums funeral.

    It doesnt have to be bad. Mum wanted to come and live with me (just not possible), or for me to leave my disabled husband, give up my job and come and live with her (not going to happen) and begged me, with hand wringing and tears, to promise that I would never ever put her in a home. I didnt make that promise - I promised to do everything possible to do what was best for her. I truly feel that the move to her care home was the best decision I made for mum
  14. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    As other posters have said she won't be alone she'll have 24/7 care from a team of people who are able to provide that care. My mother-in-law went into a care home over a month ago after a crisis which ended up in hospital to be frank it was the best thing we did family members could no longer cope with the situation. My husband and I could no longer cope with constantly waiting for some crisis to happen or the phone to ring telling me that my mother-in-law had fallen over yet again. My mother-in-law had the idea that a care home was some sort of work house as if she was going to an old property held by the National Trust. We found a new modern home clean ,beautifully furnished ,excellent traditional food and a team of people very informal with no uniforms who are able to give her the help she needs . Of course she hasn't particularly settled well she still has paranoia and doesn't know where she is but the important thing is she safe. I think you know deep down that the way forward is inevitably going to be 24/7 care
  15. Goingbananas!

    Goingbananas! New member

    Sep 29, 2018
    I know, just feel so bad! I know what she wants and what she needs are different, and that her needs come first. The whole thing so bloody difficult. We knew this would happen, she's 60 miles away, living alone since dad died and determined not to move. No amount of reasoning over the last 9 years would convince her otherwise. ....if only
    Awaiting call back from doctor. Not too sure what I'm expecting to be honest. Or indeed what to ask
  16. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    But, sweetheart, sense is what goes first in dementia. There is no sense to be had. Just accept there can be no persuading as the memory is in a loop. It is groundhog day every day for your mum and going into smaller and smaller loops.

    Look for a home you would be happy that she goes to where the care will be good. You cannot, as I could not, do care at over 120 miles round trip. It must be taking you around 5 hours return journey.

    The love lies come in.
    1. The doctor says this nursing home will help you to get better.
    2. You are here for a short holiday.
    3. I thought you might like a short holiday so I found this lovely hotel.
    4. This is your new job. They are really desperate for help and would you like to help with tea?
    You pays your money and takes your choice. Just don't tell her it's a care home.

    You are likely to feel guilty. Remember, what you are doing is for the best of all of you. You cannot be providing the care your mother needs. A very good point was made by Shedrech that carers will probably, as they are not family and wracked by guilt, get a better reception from your mum. It is only because they are emotionally uninvolved and they are, thus, calmer.

    Part of your vascillating is probably due to the fact you are plum worn out. Once the decision is made you will all feel better. Loads on advice on here on how to do the move, what to take and what to do with clothes.

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