How to get more practical help?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Dave W, Jul 25, 2005.

  1. Dave W

    Dave W Registered User

    Jul 3, 2005
    I've been awed by the kindness of strangers on this board so far in helping with queries and responsing to messages. Rather than continuing another thread, as my focus today is more specific, I'm starting this one. And apologies for the length of the posting.

    The only diagnoses I have at present for my mother are a) small vessel disease (from a CT scan in March this year) but with no further explanation, and b) short term memory less and possible depression - from a consultant psychiatrist, who has so far seen her twice. (Next appointment is 4 August.)

    She lives alone, about 90 miles and three hours travel time away. I'm the only son, and bearing the brunt of phone calls on bad days when she's either down or in a terrible flap because she's lost something (three times in the last week - cheque book, an envelope of cash, and today her pension cheque, although she's had the werewithal to phone up for a replacement).

    She's not been told a diagnosis, and while she thinks 'she's not been well' , is trying to convince herself/adamant she's not going 'barmy'. She's coping on her own at present (though variably, I suspect), and scared stiff of being 'put away'.

    Having been bounced from GP to psychiatrist to local MHT - with little or no explanation from any of them - during a bewildering 8 day visit recently, she's now receiving 30 min visits from Care Workers each day (7 days a week) to ensure she's up, had breakfast and taken medications for bood pressure and anticlotting. (There has been no additional medication or 'treatment'.)

    I pray she doesn't lose the cheque book again before the bill arrives (I got made redundant last week, and can't afford to cover her costs in any shape or form; I'm visiting every weekend, although finances may need to deplete this soon. And I'm worried that I should really declare the need for possible crisis visits to any future employer, but am scared that I'll wind up unemployed longer or redundant again fairly quickly.)

    I'm acutely aware that's she's lonely a lot of the time, and being on her own can't be helping. The local Crossroads branch's web page does say all its services are free and that they work closely with statutory services. While she'll be reluctant to accept it (she was reluctant to accept Care Workers, and will probably kick up hell when the bill arrives), can I speak to her GP about him suggesting it to her? A few hours company a week would be very beneficial to her. (She's flatly rejected the idea of day centres several times.) As far as I'm aware, the GP has made no contact with her since I took her to see him in late June., when I realised she'd not been taking the medication for several months.

    And what right do I have to contact the MHT, the GP and so on directly - I may be doing them a disservice, but I wonder if I'm being given a full picture?

    As Mum was plainly not disclosing much to them during my recent long-ish visit, I provided the GP and consultant with a diary form fax giving fuller details. The consultant appears to have been instrumental in getting Social Services involved. I had one phone call from a CPN, whose number I have, who first met my Mum on one of her worst, most confused days and mentioned that she is on a provisional waiting list for hospital but that aim is to keep her home as long as possible as moving her is unlikely to help.

    At various peoples' suggestion, I also got Mum to complete an EPA form recently (we waited for a very lucid day, mentioned the idea, and she thought it was excellent, so we completed the forms, witnessed by a neighbour). Should I make the GP etc. aware of this - the form is with me for safekeeping, and is not registered. (She also completed a General Power of Attorney form, although I understand this might be of limited mileage.)

    Essentially ... I'm doing what I can, but distance - and now my own circumstances - make that limited. My priority has to be finding new work (I have debts to clear), and ensuring my own relationship doesn't suffer. As it is, I'm in danger of the anxiety that the situation is creating could swallow my life wholesale.

    Where can I take it from here in ways that will help, won't run up bills unduly, and won't antagonise her?
  2. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    Do you have a community psychiatric nurse on the case? She is my first point of contact re my husband, and when I was really cracking up about the diagnosis did put me in touch with Alz Soc, who send in 'befrienders', and my local carers organisation.

    I think you do need to be absolutely upfront with these people, and tell them you are going through a personal crisis and simply cannot cope unaided with mother, but also cannot cope with worrying about her. Insist you are told who is the person in charge of her case, and then be demanding. I have not had any problems abouth doctors and so on talking to me - but then perhaps because I have kicked up a fuss they think I am a potential extra patient.

    And it might also be worth you asking a social worker where you live if there are any grants or benefits for people in your situation to cover travel costs to look after you mother.

    I'm sure you have paid in to the system for years, so now is the time to stand up for your rights and demand your due.
  3. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Dave w
    your first port of call is your mum's GP,he/she is the gate way to help.
    You don't say if social services have made an assessment for Mum of her needs,they should.
    Has she has a social worker?
    See the GP first they may contact Social services for you.
    Let us know how you get on.
  4. Dave W

    Dave W Registered User

    Jul 3, 2005
    Thanks Norman

    Hi Norman

    and thank you for the message. Her Gp is local to her, not me but I will be faxing him (as he's nigh on impossible to contact by phone) tomorrow to explain my changed circumstances.

    Social Services have made an assessment - as far as I can tell at the insistence of the consultant psychiatrist. (They phoned me, her GP having given them my mobile number without telling me that he had or why they were contacting me). She's getting 30 mins a day to ensure she takes morning meds (she's supposed to take a PM pill for cholesterol, and that's probably erratically taken), has had breakfast and is up and dressed. She refused meals on wheels, or any help with socialising (she's slowly been cutting off a few neighbours over the last few months).

    The next paragraph may offend some on TP, and please know it's not my intention. But I can't help but feel that an assumption is being made that I can and will be a carer for her when I'm not in a situation to do so. If I didn't exist, steps would have to be taken anyway, but I feel like I'm being made an excuse for doing as little as possible notwithstanding that her own attitude doesn't help). I also feel like I'm bucking coping with the situation for a woman that's ner exactly gone out of her way to be helpful or supportive to me.
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Oh dear Dave, sounds like you have a fair few problems at present to deal with. Firstly, personally, I would say you have to do what you must, to keep your own life ticking over. Not only is this what your Mum would want for you, but it also makes sense. If you are unable to cope financially or wreck your own relationships, what good would that do in the long run? We all have a right to a life of our own besides worrying about what to do for a loved one who is ill. The fact that you live some distance away should have some bearing on SS thinking you can be a full time carer anyway. If they don't realise this, tell them so, and that you are under considerable financial pressure, so must continue with working. Caring is not everyones cup of tea anyway. Some can do it, no qualms, others find they prefer to foot the bill and hand over to those qualified to deal with things that they themselves would get a panic attack over. There is no law that says though shalt give up your life to care for another. You must do what is right for you, we are all made differently. I am sure you care deeply about your Mother, why else would you be spending time posting on this board if not? The thing to do is to decide how best to ensure her needs are met. If this cannot be done by you, SS have an obligation to ensure that your Mum is cared for. If she has money, then OK, she has to pay for the privilege, but that is the law and thats that. If your Mum has been assessed as needing one half hour visit, make sure you ask them to let you know if her situation deteriorates. If it does, ask them to arrange more cover. You mention a Local Crossroads, they are brilliant. They may do a "Lunch Club" day care, if they do, see if you can get your Mum on the waiting list. Explain you live miles away and ask them to help you arrange transport there and back. Introduce it to your Mum as a pensioners lunch club, thats what I did. My Mum went for nearly two years, every Monday, it was always a lunch club to her, so no problem in getting her to go. Crossroads will also do home sits/visits if you explain the situation. You could perhaps introduce them as someone who will help with the tasks your Mum now finds difficult or a friend to chat to. Only you know best how to handle it. Crossroads helped us more than any other agency really, and it cost the least! The day centre was brilliant, but Mum knew it was for people with dementia. At Crossroads, most of the time she could join in at her own pace and was quite bright at the quizes, sing alongs etc. She felt normal if you know what I mean. You also mention your relationship, afraid AD has no pity for these. It is up to you to ensure that you don't end up the loser here. Often, partners can feel threatened by the increasing needs of a dementia sufferer. It does not mean they don't care, just that the way your relationship has been till now, is changing, through no fault of theirs, and it is hard to cope with. Make sure you spend time to be a couple and to say you care often. Thinking of you, love She. XX
  6. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    Dave, when I was reeling from the prospect of years ahead with very little in it for me, I asked the local carers group what I was legally bound to do, and they told me the answer was 'nothing'. I am under absolutely no obligation to care for my husband. I was amazed. The person there even told me that if the situation became unbearable, they advised taking the sufferer to the mental hospital where people who had undergone years of training were, as opposed to completely untrained me, and handing him over!

    I can't see it coming to that, but it is good to know. Just for the moment you need to concentrate on getting your own life back on track.
  7. zed

    zed Registered User

    Jul 25, 2005
    Hi Dave

    I know exactly what you mean about people expecting you to take care of your mother. As my sister lives outside of London, a lot of the burden has fallen on to me. I feel very resentful about this, as Mum and I have always had a difficult relationship, yet I am expected to drop everything for her and be the perfect daughter.

    About your job, I suggest you don't mention anything to your potential employers until you have got the job! I recently changed jobs, I was really nervous about leaving my old job as they were really understanding about me taking time off for mum.

    I would suggest that you contact your Mum's local Alzheimer's Society or Age Concern, and the social worker, and arrange to see them all on the same day, and ask them exactly what is available for your mum. There is so much out there, it is hard to get through the maze sometimes. Then once more services are in place for your Mum, the pressure will be off you for a while. Local charities may do befriending or home visits, social services may be able to provide someone to take her shopping, there may be a local social club she could visit as an alternative to day centres.

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