1. Badgeman

    Badgeman Registered User

    Feb 22, 2014
    I can't sleep. My mum has been in hospital for 7 months with mental health problems related to her Alzheimer's. She came out last month with a care package last month, and I was happy to accept the care package.

    However, it's useless.

    I posted before and mum was extremely ill and extremely violent towards me, and I was lost, in her illness, and I didn't understand what was happening. One day, when it was too much I called the SS and my GP surgery. She was sectioned for... Well a long time. I was told it was for the best she didn't leave, and that she entered a nursing home. However, after 7 months she came home, and whilst her memory is completely shot, her violence has gone and she is very affectionate towards me, and I feel that I have my mum back. Of course it is a pale imitation, but it is more like her than she was (last time I posted things were so bad, but the replies were correct in as such as she needed proper medication). Obviously, she is not right, but I can cope completely with her oddities.

    The crux of the matter is, the private company that come at 10am, and 8pm are disruptive, they cannot do anything that I or my mum both need. They cannot give her medication etc, only offer to wash her. I would do that if called upon, but I think that will be the last to go.

    I feel I need a little more than that. She cannot walk anymore, and I take her to the necessary washing etc. but I have been promised a walking frame (I have lilies and flowers in the garden as she loves them), but she cannot walk with a stick, she is too wobbly, but I've been waiting since her admittance to hospital in November, yet I've only got red tape.

    I'm sorry, but since my mums diagnosis in 2010, I've been alone with this. I was alone for 6 months whilst she was in hospital. I do mean alone. I never had a person speak to me in all that time. Everybody who knew me and knew my mother quit when her diagnosis was confirmed.

    However, I'm in a pickle and need advice, I'm not happy with the carers that come. They come as I've said, and don't do anything? They are pleasant enough, but they are no help. They just wish to wash her.

    I feel let down by the SS, they did not provide what I needed (transport for medication, or pick up of the meds). I needed somebody to speak to in case of a return of mums violence (however, I think due to the correct meds this won't happen, she is sooo much better, and I'm told she had a mental illness due to the Alzheimer's).

    I'm left with a private company who do nothing, and are very IMHO patronising, but tonight I was upset that the members of the company are BNP members, and we got into a bit of a arguement. I feel very uncomfortable with them coming to my house. I felt very unhappy with their 'they come over here with their burkas', ****. I no longer want the coming to my house. I feel terrible with them, and unwanted by the SS, but I fear I will lose everything coming close to help.

    Sorry to rant so much. I am alone, but I needed to write this down, I needed to put this up, as I feel that if you live in South-west Wales, please be careful, I'm not sure that the SS are a solution or a problem. It may be better to beg your GP. It's just my experiance.

    I'm so sorry for the long post. I can't sleep because of what has happened. I hope I make sense...
  2. marionq

    marionq Registered User

    Apr 24, 2013
    The loneliness is part of your problem and you need someone to chat to about day to day issues. Are you able to get to any of the Alzheimer's Soc groups? Can you phone the soc and tell them how you need company and problems about accessing them? They might have a solution

    It is common here in Scotland so perhaps Wales too that pharmacies will deliver meds direct to your door at no cost if you are a regular user. Ask your pharmacy and also look online at your area in case another pharmacy offers this service.

    Write down all you feel you need from the agency group and what you don't want. Call SS and ask for a visit from a social worker who can discuss this with. Emphasise how lost and unsupported you feel.

    Let us know if you manage to make any changes.
  3. mrs mcgonnagal

    mrs mcgonnagal Registered User

    May 9, 2015
    Hi badgeman,
    I have been very lucky in that my mams care package was given for a temporary few weeks to a new small, caring company, excellent. The social services wanted to move us to a large care company, but I argued I wanted to stay permanently with this one. They are flexible, talk to my mam, involve her and are very kind. Is there a chance you could change company? If you talk to ss, and tell them what's been going on? There is no way I would tolerate such talk in my house, you are totally justified to complain. Hope you can sort things out, you have been through enough. xxx
  4. Jessbow

    Jessbow Registered User

    #4 Jessbow, Jun 29, 2015
    Last edited: Jun 29, 2015
    You sound very alone and very frustrated.

    Ask questions of the agency- why wont they give meds? most do, but you have to have completed a form authorising such - I believe the GP had to fill it in ( they do here)

    Next, ask of her surgery , which system they use, most allow you to request prescription on line, or by e-mail.Some do auto repeat.
    Ask them which chemists collect from the surgey.
    Then phone each of those chemists in turn- which will deliver? unless you live miles and miles from anywhere, one will be able to help you I am sure.

    That hopefully will solve your meds problem.

    Are your expectations of the carers reasonable? They are there primarily to assit your Mum not you - sorry, don't mean to sound harsh. Running you around to collect her meds is your need not hers.

    can she get safely in and out of the bath?
    Can she stand safely in the shower?
    Doe she have grab rails to assist?

    If the answer to any of the above is No, I ca see tht they wont do either- its not safe for them or for her. Can you change anything so it is better/easier?

    How long is each call, and what would you actually like them to do? be specific and I am sure someone would soon say if you are realistic in your expectation, and help you from

    Who made the decision to have her home?
  5. Badgeman

    Badgeman Registered User

    Feb 22, 2014
    You are completely correct, they are only here to bathe and make sure mum is okay. That's fine, but it is really not what she needs at the moment. She is so much better on her meds now, and she needs a walking frame so she can go outside, but I'm getting nowhere getting one fitted.

    I was assured when mum left hospital a month ago, that I would have support, and really I feel a bit cheated. I have to do everything, and getting her meds takes anything from 1-2 hours on a bus in a very rural area (I can't drive due to glaucoma). It's just those little things like getting my own and mumps meds that would take the pressure off me a bit.

    I sound like I'm moaning, but sometimes mum has a panic attack, and is awake until 3-5 am, but I still have to be up at 9am every single day, for the care workers. It's not working, it's not helping, and I'm exhausted.

    Thank you kindly for the advice. It is deeply appreciated.
  6. Badgeman

    Badgeman Registered User

    Feb 22, 2014
    Hello, and thanks for the response.

    I'm going to make some enquiries tomorrow about a postal medication service. I used to be able to get meds via the local bus service bringing meds to the village. However, something went wrong and I'm not 100% sure what went wrong, but the local chemists no longer do it, I hear the rumour is that by accident the wrong medication was given out, and somebody got very ill, and as such it stopped. I will have to try one of the more well known national chemists outside my area and see if they do a postal style prescription service. Part of the problem is that (as I've mentioned in a reply to another member), I can be away from mum for 1-2 hours, and if the bus brakes down or goes wrong (it happens often), I could be out for 4-5 hours, and I daren't leave her alone that long.

    Thank you for your insight, it is appreciated.
  7. Badgeman

    Badgeman Registered User

    Feb 22, 2014
    Thank you for taking the time to reply, it's appreciated.

    I'm just unhappy with the service generally. They come twice daily and I feel offended with some of their political and IMHO racist views. Basically they come to see if mum need the loo or washing, and Mum would rather die. In the future possibly, I have no doubt.

    I don't see a social worker very often, we get visits from a local mental health nurse once a week, and I spoke to her about reducing the visits to once an evening, as mum gets very anxious some evenings and it seems to work if they come and just talk to her and calm her down. However, The mental health nurse told me that the local SS are underfunded and under staffed, and presently there is no one there with relevant authority to do this at the moment. I don't know if I'm being fobbed off?

    I thank you sincerely for your replay, and I do appreciate it, I really do.
  8. Badgeman

    Badgeman Registered User

    Feb 22, 2014
    Thanks for the reply.

    I feel very, very alone.

    I cannot get to any of the doc groups, I can't drive (glaucoma), and they are 21 miles away and I would be away from mum for far too long and she cannot do much for herself, and I fear for her if she's alone. She can only go to the toilet, and make a cup of tea for herself and that's it. She can't do anything else, but she is so unsteady on her feet now that a I dare not leave her alone, even to do what she is capable of.

    I know I'm moaning, but I've lost all faith in my fellow humans (except yourself and others that have replied to my plea for help), during mums illnes.

    Thanks for caring and thanks for the reply, it does matter.
  9. theunknown

    theunknown Registered User

    Apr 17, 2015
    I have no advice, but empathise with your frustration. I know what it's like to have a journey that would take 20 minutes by car take one-and-a-half hours when you're relying on public transport. I'm astonished that the people who are supposed to offer care to your mum are offering up their political views, particularly when those views are what many people would see as extreme.
  10. Oxy

    Oxy Registered User

    Jul 19, 2014
    #10 Oxy, Jun 30, 2015
    Last edited: Jun 30, 2015
    I so sympathise with you. However your present situation is untenable long term as I think you probably feel yourself deep down.
    Following may be able to give you advice/leads. admiral nurses (google them) explain your position and difficulties , they may be able to recommend postal meds service and sitting service as well as carers. Also how best to resolve the racist carers. Politics should be kept out of it. These bigots unfortunately think that events this week give them carte blanche to air their views. NO it does not-they don't want to realise and haven't got the capacity to realise that events are due to extremists whose acts are not related to any religion. Religions only preach kindness. We are all humans and hence the same no matter what colour or creed- well assuming we have a heart!!!
    AgeUK or Dr may know of volunteers who would provide sitting service. Hard to recommend much as I don't have experience of the very rural location you are in. Do you have neighbours? Would they be able to pick up meds when they go shopping. Major supermarkets-would they deliver with shopping? You may not be affiliated to a church, but would vicar be able to help as I thought rural communities help one another. SS can be useless but do often lean to the left politically and may therefore be sympathetic on racist theme as this is totally unacceptable. Don't allow yourself to be fobbed off by SS at first hurdle. Good luck.
    Could local MP help? Plaid Cymru leader? Email /phone-worth a try.

    Another idea-just been on RNIB site and they offer emotional support, befriending etc services for conditions which involve sight loss, as glaucoma. They would also be able to help with meds problem with ideas or indeed practically. There are good, kind people who help about. Unfortunately glaucoma research don't appear to have support or counselling. Doesn't solve carer issues but is something for YOU and meds is for both of you. Ultimately if you are more relaxed, it will rub off on your mum too.
    Wishing you all the very best for a solution through advice from one of these sources or any other that anyone on here may think of.
  11. Badgeman

    Badgeman Registered User

    Feb 22, 2014
    Thank you.

    I really do appreciate your understanding. I am sincere about that. Too many people do not share your views. Your response means a lot to me.
  12. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    I think you need for an occupational therapist to assess your Mum. They will supply things like walking frames, grab rails in toilet etc. you could ask the Dr if he will arrange this or you may need to ring social services again.
  13. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015

    I don't have a solution for you, but wanted to say that here, you are not alone and people do understand your situation and the frustration and difficulties you express.

    Forgive me, but I am in the States and do not always know the correct terms/services/organisations to suggest in the UK, so thank you for bearing with me and I hope someone more knowledgeable will chime in with better information.

    I agree with onlyme that your mum sounds as though she needs what we would call here, a functional occupational therapy assessment, to identify your mother's needs and better meet them. This was a godsend to me.

    TP is a perfectly safe and appropriate place to blow off steam and say whatever you need to say; nobody here will judge you. Having said that, you sound like you are extremely stressed and stretched very thin indeed. Carer breakdown is not something you want to experience and although I know it's difficult to navigate the social services route, do want to encourage you to reach out. I wonder if any or all of the following might be of use to you: Age UK, the UK Alzheimer's society, admiral nurses, the Samaritans, the Wales Dementia helpline, the CALL helpline, the RNIB, I don't know, but somebody here will know!

    We will be thinking of you.
  14. Badgeman

    Badgeman Registered User

    Feb 22, 2014
    Thank you sincerely. It is appreciated.
    I worry that I'm getting stressed out and screaming about how bad my position is when ther are people out there who must be in a worst position than myself, and that I'm whinging over nothing. If that makes sense.

    My Mum was extremely violent in the past and after spending around 6 months in hospital, the violence has stopped and she is more like the Kind person I knew. However, her memory is totally gone. She cannot use the TV or the kettle, phone etc, and it's tiring. But, I don't know if it's the British stiff upper lip etc, but I feel guilty speaking about all this on the forum. As I say I feel like I'm whining, considering how much better she is with the proper medication.

    I cannot say how much the kind words are appreciated. Sometimes a pat on the back is worth more than any medication. Thank you again.
  15. Badgeman

    Badgeman Registered User

    Feb 22, 2014
    I've been awake all night as mum has panic attacks, and I'm sad to say I need to get some sleep this afternoon.

    You are right, I must ring social services and get something done about mums walking frame, and she needs something doing about the bathing facilities in the house. My mum is extremely stubborn about letting people wash her etc, but she cannot walk any longer and we have a shower within the bath and there is no way mum can get in it. I've been promised so much, but had so little delivered. I will ring the SS on Monday and try and get something done. Mum is bed bound without a frame, and I've been waiting since November for one for her.

    The occupational therapist has been in the past, but Mum was, shall we say unpleasant towards her, and she didn't come back. I can understand this as mum was very ill at the time.

    Thank you, advice is very much appreciated.
  16. Badgeman

    Badgeman Registered User

    Feb 22, 2014
    Thank you. You have given me some ideas.

    Sadly, as I've stated in my responses to members of the group, I've kind of been blacklisted by my local community. I'm sorry to moan, but mum was in hospital for 6 months, and nobody spoke to me all that time. I was in the past reported to social services for abusing my mum, and it was awful. My mum had a severe mental health issue due to her Alzheimer's and was in a terrible violent state, and people put two and two together and got five. It was unpleasant, but gladly that's over now.

    You are right I should be more assertive with the SS. The excuse is that they don't have the staff, and mum has a different social worker every few weeks or so, and the paperwork is slowing the processes down (I'm not kidding, I've met five since January), and I feel that they should do something or leave us alone. I don't know if that makes sense, but they come and see me with sheafs of paper and write everything down, but do so little.

    I'm looking into a pharmacy that delivers, and I've found ASDA now deliver groceries, so that's a step.

    Thank you for your help. It's so appreciated and I so grateful for the people that have responded to my post. I do feel guilty for moaning, but the isolation sometimes gets to me, and I must vent some frustration somewhere, but as I say, I do feel guilty about it.

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