1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Hi everyone.
    Have just had the week from hell, mum has another chest infection and have also had a squad of workmen in changing from oil heating to gas. The place is a mess. Whilst trying to clean everywhere, and I mean this dust gets everywhere! I've been up and down the stairs with trays, medicines, etc and having to do her lung drainage every hour. I am going nuts.
    Now she is coming around and is able to walk about again, unfortunately she just keeps trying to bolt from the house and wants to go home. This is just constant now and I really don't think dad and i can bear anymore, we are so tired and filled with pains ourselves, she needs to be watched at all times.
    I was wondering if anyone knows of a LIGHT tranquiliser or something that will calm her to help us cope. We are seriously thinking of a home for her we are so bloody exhausted. I never wanted it to come to this and I don't really know if we could actually go thru with it, but at the moment I can't bear being with her 24hrs when she is going mad to "go home" she doesn't know dad or me anymore.
    She was on a neurolyptic drug seroquel but I stopped that 7 months ago as she was just a zombie.
    All I want is something to calm her to be used occasionally
    Can anyone advise me please. PLEASE PLEASE!!!
  2. Jude

    Jude Registered User

    Dear Magic,

    No wonder you haven't been posting messages recently. I was wondering if something was up. Sounds like the house from hell scenario at the moment!

    Shortly after we moved into the bungalow last year, my father had a fairly serious 'turn'. Our Doctor prescribed a mild medication in the form of some type of mood enhancing 'happy pills' for a fortnight. Can't remember what they were now.

    Get in touch with your Doctor asap and ask him to prescribe something that won't interfere with any other medication already being taken. That will give you a bit of a rest to regroup and feel far less frazzled about things.

    Hang in there.......

  3. CraigC

    CraigC Registered User

    Mar 21, 2003
    #3 CraigC, Aug 15, 2004
    Last edited: Aug 15, 2004
    Hi Magic,

    Have you considered restpite care? It may be worth discussing this with your GP. Just a few days or a week could make a world of difference to you in this difficult situation.

    If you GP is made aware of the situation, she/he may be able to provide some additional support.

    Take Care
  4. Jude

    Jude Registered User


    Is this a typo slip or did you really mean 'restBite care'? I like it.

    Perhaps we could start a thread for 'Altz-speak' language now. I was particularly impressed with Bruce's interpretation of CPN, meaning 'causing problems nationally'.

  5. Jude

    Jude Registered User

    Dear Magic,

    Respite is certainly one way of giving yourselves a breather and getting the house back in order. Would also give you time to decide on the next best course of action.

  6. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    #6 Mjaqmac, Aug 15, 2004
    Last edited: Aug 15, 2004

    Yes folks, will definitely find out about respite tomorrow. The only problem is mum needs physiotherapy for her chest and lungs 3-4 times a day which I carry out myself. This is becoming increasingly harder with my arthritis in my hands. But because of the physio needs no one is terribly keen to accept mum for respite. I am really coming to the end of my tether and my "causing problems nationally" person is great at talking but **** at organising. I have organised everything myself since this dementia started as nothing promised ever materialised.
    I think if I could get a rest I might be able to carry on.
    If only the siblings hadn't had their hearts surgically removed I might not be in this mess. I wish I knew their surgeon!
    Thanks to all you guys for your support. Where the heck would I be without you?
  7. CraigC

    CraigC Registered User

    Mar 21, 2003
    Thanks for spotting that speeling mistoke Jude ;-)


    it will depend on your GP, but you may be able to get emergency respite care. It sounds like your mum needs specialist care, so there may also be an option to have someone to come in and help you - say for an hour each morning helping your mum get up, just giving you a break and time to reform yourself in the morning. Make it abosolutely clear to your GP that you are at breaking point and that help is needed sooner or later. You may also want to phone the Alzheimer's Helpline on Monday just to find out what other options may be available to you.

    The helpline is open from 8.30am to 6.30pm Monday to Friday.
    The number to dial is 0845 300 0336

    Take care
  8. Jude

    Jude Registered User

    Dear Magic,

    Don't panic. Just phone the GP first thing tomorrow morning and spell it out. Shout and yell if you have to...! Ring the CPN and insist she/he comes around to help set up respite care and interim care support IMMEDIATELY. That's what they are paid to do.

    Also don't forget to ring the AD web line as Craig has suggested.

    Keep in touch here, if you have time.

  9. Chesca

    Chesca Guest

    #9 Chesca, Aug 16, 2004
    Last edited by a moderator: Aug 16, 2004
    Dear Magic

    YOU need respite away from the house and Jude is quite right that you insist on more support, by whatever means are available. I sometimes think the so-called support services rely on the fact that we're too knackered to force the issue, in my case sadly misled though they be. Where is the basic bloody humanity in all this? It's always the same. While you carry on struggling, they'll let you - you're the cheap option. Let the highly overpaid useless bunch of professionals take some of the flack.

    Surely to God your GP has to be aware of the unbearable stress you must be under and can start kicking some butts.

    Drugs to calm Mum' psychosis? Have you tried an elephant gun! Sorry, just me being cynical, perish the thought. But I can't understand why there hasn't been a trial to find something suitable for her. It is possible that you may have to live with Mum sometime in Zombie mode, but if you can get some positive benefit out of them even for a short spell, it's got to be better than what you have - it's not cruel, its another coping mechanism. What's happening to you is cruel.

    The decision about finding a nursing home is a difficult one, and one Dad and I fought for quite a few harrowing years. The fact is nobody wants it to come 'down to this' - promises made, feelings of breaking that promise. But what are we promising. We don't even know what we're talking about when we make such promises. If you do decide to go down this route, search out a place as close to home as possible so that you can call in - Mum's is around the corner 10 mins or so and sometimes I just pop in for five minutes on the way back from shopping, even if I've seen her earlier. I know this is not always possible and, quite frankly, I hate the place she is in, or at least the management of it. And don't, for God's sake, listen to the so called professionals, make your own decisions. It's a tough call but I won't say be brave, because at heart I'm a cissy!

    I will find out the name of the sibling heart removal surgeon from mine and let you have it, I think most of us will have the info somewhere to hand.

    Thinking of you
  10. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    #10 Mjaqmac, Aug 16, 2004
    Last edited: Aug 16, 2004
    Chesca the stuff they had mum on before is actually the drug they use in an elephant gun!
    The info I got on the drug stated that it is the same thing used to fell wild animals. This would give you the impression that mum is like Father Jack from the Father Ted tv series running over the mountains! I have no doubt she may become that, rheumatoid arthritis and all, she can move like Red Rum when least expected, usually when you are absolutely knackered and you'd rather give someone your life savings than actually stand up at that precise moment.
    The problem was mum was so sedated she couldn't walk, talk or co-operate with her physiotherapy which involved me clapping her back to bring the phlegm up every few hours, she almost died in the assessment place (this was the drug trials and this was the drug they were all delighted with mum to be on). We took her out of there in an ambulance and straight to hospital, she was also terribly dehydrated, it was a living nightmare and that's why I loathe to put her anywhere else.
    Unfortunately now, I also have a chest infection and am having trouble keeping on my feet. Dear God, what does the carer do when they're sick? Bloody joke isn't it? You're so right, we are the cheap option and slave labour at that. They are well aware it's a labour of love.
    Sorry to hear your siblings have also been to that heart surgeon. They have amazed me, the thing is she has always been a wonderful mother to us all, I don't understand them.
    Jude, I replied to your message yesterday but your box was full.
  11. Jude

    Jude Registered User

    Dear Magic,

    Sorry about the full box - I've fixed it now...!!

    I thought it was a given that Carers are not EVER allowed to be SICK. How totally inconsiderate of you! Tsk Tsk. Remember the Panorama programme when that poor chap [Peter?] had a stroke and couldn't even find 5 minutes to go to the Hospital because there was nobody around to look after his bedridden wife? God, this system stinks....!!

    Magic, it makes me spit to feel that you are ill from all the stress and yet still having to shoulder the burden of caring alone. It's time to start YELLING for help. So ring the Doctor, the CPN, Crossroads, Age Concern, Social Services - and your family as well. Also phone your local Health Authority and tell them that you MUST have the services of a Nurse for a week or so.

    If you get short shrift from this lot, get on the your local paper and speak to a reporter. A nice juicy article about 'Who Cares for the Carers?' might just embarrass a few people sufficiently to come to your aid.

    You can also tell your worthless siblings that I'll be over with Chesca's elephant gun shortly...!!

  12. Jude

    Jude Registered User


    The heart removal surgeon must have visited well before now!

  13. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Dear Magic
    being ill is one of my dreads.
    I have just nursed wifey through a chest infection,two weeks,Dr came twice,now I have it.
    This is a nightmare,go and have a lie down she says,then she wants too know where am I and am I coming down.
    They forget of course that you are not well,the heart removal man has been long ago so we struggle on.
    I finally went to the Doc this morning,you'r not too bad he says,I had no answer to that,Idid the second word was off,but I couldn't say that,I didn;t really want to have too find another Dr!
    Happy days
    Day to Day
  14. Jude

    Jude Registered User

    Dear Norm,

    I do hope you will be feeling better soon!

    Magic's plight, and now your illness have highlighted a major problem in the carer 'system'.

    Think I'll post a new thread on this topic and see if anyone can come up with some bright ideas.

  15. Tressa

    Tressa Registered User

    May 18, 2004
    N. Ireland

    my heart goes out to you, you really need to start thinking about your own health, because what good are you to your mum or your dad if you become too ill. As everyone has told you you need to shout from the roof tops. I am nowhere near coping with as much as you and last week was at the end of my tether and after trying all day to get hold of my mums Care Manager, finally did and told her I was running away. She soon changed her atitude to me because she knows if I leave it is going to make her job a hundred times harder. So you really need to tell them you cant cope anymore. You love your mum very much but as alot of carers have found out before us and how we will find out is; you can only do so much and by the sounds of it you have done more than enough. I know its hard for you but maybe its time to let go and let someone else take over the responsibility before you burn yourself out completely. I am sure your Mum would not have wanted your health to suffer because of her illness. Give yourself a break before its too late.

    As for siblings and heart surgery, if anyone knows the name of the surgeon and where he can be found I would like to have a strong bloody word in his ear cos he done a fine job on my family also!!!!!!

    Be strong Magic but start to think of yourself,

    Take care.
  16. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    I collapsed this morning in a heap, my legs just went from under me and I knew I can no longer carry on doing all of this on my own.
    Got in touch with a few people about respite but with mum's physical and mental health it's not going to be that easy. Plus i feel so guilty and don't really want her to go anywhere. Haven't stopped crying all day.
    Thanks to everyone for all the support. At least you all understand.
  17. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Magic

    A wee Brucie story, and it is not only true, but hot off the press....

    My wife Jan is an Early Onset Alzheimer's sufferer - that is to say, she was 50 when it started to kick in. She is lucky to be in a very good care home now, along with several other Early Onset people.

    One of these is about her age, and his wife is a little older than I am. We have met at the home as we have visited our spouses, over the past two years.

    I noticed recently that she had not signed into the visitors book for a couple of weeks and assumed she had been on holiday.

    Today I saw her come to visit her husband so, as I left, I popped across to say hello. I said the immortal words "I suppose you have been half-naked on a sunny beach somewhere".

    She turned to me and said "no, I had a heart attack". I asked what the doctors said and she replied "they said the next one will kill me".

    Caring takes its toll.

    You will do no good to Mum if you are even 'just' knackered, let alone seriously ill. Please try and forget any feelings of guilt - these are natural, but unhelpful and unnecessary.

    Try and get Mum in somewhere on respite, then take that time to build up your strength and to think about what happens next. Whatever decision you come to, you need to care first and foremost for yourself - how otherwise can you care for ANYONE else?

    Best wishes
  18. Chesca

    Chesca Guest

    Dear Magic

    Collapsed? Just exactly at which point was that? Dusting? hoovering? pummelling? blowing your nose? playing catch-me-if-you-can with Mum? loading the elephant gun? running up or down the stairs? cooking up a storm?

    Some of us are born with guilt, others have it thrust upon them... . Nobody ever died from a week off work and even if they did, they had a smile on their face, I bet. We're not talking about the rest of a lifetime here, just a week or maybe two. Otherwise I can see a picture, half painted by you earlier, of a grave stone: 'Here lies Magic, died of guilt' whilst silhouetted against the setting sun your Mum is being chased across the hills by those left charged to her care, oblivious to the pursuing mayhem. Hold the thought....

    You're not even equipped mentally to make any rational judgement when under such pressure. Try it, one day at a time, an hour at a time, with someone in attendance, letting go. Maybe gradually, always supposing you haven't been whisked of to hospital, you'll get used to the idea that the whole house of cards won't collapse - it won't run according to your routine but it'll still be there.

    You don't have to accept the CPN you're allocated. Let your social workers know that it isn't working, you do have the right to complain, or get your GP to.

    Nobody will ever care for any us as do those that love us, wherever we end up. I felt much like you do about 12 months ago, couldn't entrust care to anybody because it couldn't be done LIKE I DUN IT! Things have gone wrong and lordy do I kick it up. But Mum, Dad and I are still here. We're all with you and don't forget to include your local carer groups when looking for advice,

    And anyway, on a brighter note(?) I tracked down the heart removal surgeon at a private practice - name of Burke, Hare and Manson - but unfortunately all practioners are currently employed in the Hedonistic Isles on a comprehensive exercise to ensure all our siblings are satisfactorilly treated .

    I am thinking so much of you as, I suspect given my own experiences, are many other members

    Best of wishes
  19. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004

    Chesca, I hear everything you're saying loud and clear and I know you and the rest of the guys are absolutely right.
    Feeling a bit stronger today, had a good old howl last night which helped, but I suspect there's plenty more to come. Am going to find out today about the respite. A lady who runs a really lovely place mum goes to for day care says she will be willing to take her for respite if she can get enough back up from a physio and the oxygen care etc. This is very good of her as it is only a residental home she is running and not an EMI unit, although it does have a coded locked door. The last time I was offered respite the CPN set up a week in a nursing home with no locked door, she said she wouldn't wander, how the hell did she know? Dad and I had to block it at the last minute because it's not much of a respite wondering if your mother has found a cunning plan to escape. I'm sure her own mother would have been put in a secure place, but hell, this was only MY mum! And hers doesn't have dementia. The problem with mum is her needs are somewhere between a nursing home and a residential home, her health needs the nursing home but her dementia is not so far advanced that she still enjoys the company and interaction with others, she just absolutely hates to be in any room alone.
    The good news is the physio says mum's chest has cleared (as much as it can do) and the danger of the infection is over, we kept her out of hospital, YIPPEE, sometimes it is bloody rewarding being a carer. That is, until the next health crisis. We usually get about 5 weeks before the next chest infection occurs.
  20. Chesca

    Chesca Guest


    Brilliant news. Good luck for today, still thinking of you. Perhaps when you have a mo, you know in between the dustin', shootin', runnin', collapsin', you'll let us know how you've got on today. You definitely sound a little more upbeat so try to keep it up. If your CPN has said that Mum doesn't need a secure environment, she doesn't know what she is talking about and shouldn't be doing the job! Your respite lady sounds a love.

    Don't forget to look after yourself and hopefully you'll soon be hanging the 'gone fishin' sign on the door.

    Many kind wishes

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