1. Lindie16

    Lindie16 Registered User

    Nov 25, 2018
    37
    Hi
    I’m new to this forum so please bear with me.
    I currently care for my mum who has dementia. I work during the week and so my OH has stopped working and stays home to make sure she is ok in the day. This has put strain on our relay- but that is for another day.
    Mum is having really bad hallucinations where she thinks there is a doctor that lives over the road that is trying to kill her. She is distressed all the time and is angry at me for not going over the road to sort him out.
    She says that he is shining lights in the house, coming in the house sometimes and making loud banging noises.
    I really need help in what to say to her. The forums say ‘try to keep her calm, distract her or tell her she is safs’ But this is not working.
    When we went to the memory clinic before we were offered an anti psychotic. I refused as I thought it was the wrong way to go. Has anyone had any experience of dementia patient using these anti psychotics? Or medication for depression?
    Mum fake cries a lot also. I sometimes feel like I am looking after a child. I know that sounds harsh but I am being truly honest.
    I am mid thirties, no children and full time career. I work 5 days and week and then take over caring for mum at weekends. She is still mobile, can still wash herself but has trouble with dressing, cooking etc
    She refuses to even talk about a care home.
    I’m at my wits end. Please help
     
  2. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,065
    Welcome to Talking Point. Your Mum is clearly in distress and it is likely that her cries are a symptom of that distress rather than 'fake', particularly if distraction isn't working. Depression & anxiety are a common symptom of dementia and there are a variety of anti-psychotics and anti-depressants which may help. It will be a case of 'trial and error' though with regards to which works best for your Mum. I'm not sure why you felt that medication 'was the wrong way to go' but from experience it can really help to reduce anxiety/depression so please consider requesting a medication review as your Mum being in distress is not good for either of you.

    If you haven't already done so contact social services to ask for a care & carers assessment. Having someone else to help with the caring might help to reduce the strain on your relationship.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,090
    Kent
    Hello @Lindie16 Welcome to Talking Point.

    Could you make a pretence of sorting out the doctor over the road? Could you say you went last night and he is sorry or words to that effect.

    My husband had both antipsychotics and medication for depression. They are not prescribed lightly and do have side effects but we need to weigh up the pros and cons and I tried to put quality of life rather than length or life as a priority.

    If it is fake crying and even not knowing your mother I would question it being fake, there is a reason for it. Either she is very unhappy or frightened and unable to articulate her feelings.

    Have you heard of the following ;

    https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

    It is a tall order and a guide rather than a rule and might help.
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    5,738
    Female
    Scotland
    I also turned down anti psychotics for my husband when he was at full on wandering stage. He was prescribed Trazodone anti depressants instead which have been very helpful for him. However your Mums situation with extreme delusions would seem to require medication if only to keep her out of a care home. I would go back to the doctors again and discuss your difficulties in dealing with her.
     
  5. Lindie16

    Lindie16 Registered User

    Nov 25, 2018
    37
    Hi
    Thanks for your reply
    I thought medication was the wrong way to go as the doctor advised that he could give her the medication but that they have horrible side affects and could shorten life. I understand that quality of life is as important as length but at the time her quality of life was not so bad. She was not as distressed as she is now and th e hallucinations were not as severe.
    We had a carers assessment where my OH was assessed and advised he could receive benefits as he has given up work. Is that the assessment you mean?
    Other than that we have had age uk come around and advise they could offer a befriended - but no one has been found so far.
    I was given lots of names of people who are carers nearby but who I would have to employee(?) I don’t understand this process? Can anyone help? I was told they are self employed and so it would be like me being their employer and paying a wage?!? Surely there is other help out there?
     
  6. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,806
    Nottinghamshire
    Hello @Lindie16. Dry good advice from @Louise7 and @Grannie G. One thing I would like to stress is the need to look after yourself and your own future. Mid thirties is very young to have to put your life on hold to cater solely for the needs of an old person. I understand why it’s putting your relationship under strain and I feel that the needs of the many (or 2) outweigh the needs of the few (or 1).

    I’m not saying abandon your mother. I have looked after my dad for 5 years in his own home. He’s now in a carehome and settled and calmer than he was at home for the last few months. But I do think you should get ALL the help you can wether that is medications or helpers from social services to enable you and your partner to live as good a life as possible. A good care package and the right medication can make a huge difference.

    You have a right to a life and a family of your own should you choose to start one. Don’t let your mum’s illness become your family’s illness.

    You mention that your mum won’t even talk about a care home. Don’t talk about it, when the time comes just find a way to do it, no one with dementia ever thinks they need the professional care of o care home environment but if often turns out to be the best thing.

    I’m not sure from your post if your mum lives with you or on her own?
     
  7. Lindie16

    Lindie16 Registered User

    Nov 25, 2018
    37
    Thank you for your kind words.

    I feel so guilty for wanting to have a life and feel constant sad and depressed.
    Mum lives in the annex next door to us. We moved to a cheaper part of the country so we could have her with us. I feel isolated as we have no friend near by and i am on the constant treadmill of work and then home to look after mum. My OH is stressed from looking after mum in the day and so I feel like when I get home I have to pick up the job of carer despite being at work all day. I am working 24/7 - be it at work or home.
    I am going to see if I can get a doctors appointment for Mum tomorrow to talk about the possibility of medication. When I went to the doctor before however I was referred to the memory clinic and given a date weeks in the future. Can my GP prescribe a care package for mum or do I have to go to the memory clinic. So confused as it feels no one at the GP wants to help me.
    Thank you again for taking the time to reply to me.
     
  8. Lindie16

    Lindie16 Registered User

    Nov 25, 2018
    37
    Thank you
     
  9. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,324
    leicester
  10. Ludlow

    Ludlow Registered User

    Jul 20, 2016
    105
    SE England
    Hallo Lindie16. My mum had very similar issues. She suddenly became convinced that our neighbour was coming into the house and trying to kill her. He also apparently could hear everything we said as he had bugged the house. Mum was in a permanent state of fear and upset. She wouldn't go to bed in case he came in to get her, she wouldn't go out in case he came in the house and left poison, and if we watched TV he crept up the stairs while we were distracted.

    Anti-psychotics are not the answer for everyone, they don't work for everyone, and they can have side effects, but sometimes they can be little short of miraculous. The first 2 anti-psychotics they tried had no effect whatsoever, but the third one hit the jackpot. Within 2-3 weeks he had stopped trying to kill her. Gradually she was able to go to bed without fear, we could go out to Singing for the Mind and church, and we didn't have to go into the bathroom and turn the taps on if we wanted to have a conversation!! And although I said to the doctor that I was prepared to take the risk that they might shorten her life, she has had no significant side-effects and is still going strong 2 years later. She has general anxiety of being left alone and I have to be there all the time, but we can enjoy things together rather than both being distraught. And because we can have normal conversations I believe this has meant she has had more mental stimulation than was previously possible and so her language skills are not reducing as fast as they might have otherwise.

    Of course these are powerfu drugs and no-one wants to take them lightly. But a couple of thoughts for you.
    If a child falls over, a kiss and a cuddle may well be enough to calm them down and make things better, but if they are still screaming an hour later then perhaps they are seriously hurt and need medical intervention.
    If someone has very severe pain, especially with a terminal illness, then we give them morphine, despite the fact that this can have side effects and can shorten life. Why is mental pain different? Whilst you and I can look at the situation and say it is not real, to the person suffering it IS real.

    One last point. I believe that GPs are not able to prescribe anti-psychotics initially so you will probably need a referral back to the memory clinic or Elderly Mental Health team. Once the medication is established then the GP will be able to do repeat prescriptions.
     
  11. Lindie16

    Lindie16 Registered User

    Nov 25, 2018
    37
    Thanks so much. I don’t think you will ever understand how much you have helped me
     
  12. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,065
    Just to add that my Mum was initially prescribed anti-psychotics by her GP, who also made an urgent referral to the mental health team, so you should not have to wait weeks for medication if it is required.
     
  13. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,738
    Female
    Kent
    I don’t think anyone has picked up on your question about using carers? I first of all used a self employed carer, so that I didn’t have to get into employment law (paying for holiday leave, tax declarations, National Insurance, liability insurance etc etc. For us, it went spectacularly wrong, and my next idea was to use an agency, so they had the hassle of covering shifts etc...but in our area it would have cost £1200 to get me 48 hours off a week. Added to that the costs of providing a bed room (this was at the ‘sleeping rate’ for nights. If my husband was up more than twice, the price went up).
    Nearly a year on, my husband is in a wonderful care home, at just over £1000 a week. There is always the option of day care, around £40 a day here. I used to refer to it as a ‘club’ and that bought us a few more months with him at home.
     
  14. canary

    canary Registered User

    Feb 25, 2014
    9,855
    Female
    South coast
    I would also like to pick up about AgeUK. They will provide things like befrienders, cleaners, help with shopping and laundry, but it is all private. They will interview you, find someone who will be a good match, sort out any problems and arrange alternative cover for holidays and sick-leave. They charge a quarterly rate to cover admin fees and then you also pay the person who does the work. I use a cleaner from AgeUK for a couple of hours a week to get OH used to the idea of other people coming in (it also means I have a nice clean house :D) and I just pay the admin fees over the phone once a quarter when they send me a bill and then I pay my cleaner in cash every time she comes; she then gives me a receipt and thats all I have to do.

    I would first of all ask for a needs assessment from Social Services. They can offer carers coming in to help with washing/bathing/showering and dressing or getting ready for bed in the evening, help with giving medication, providing a simple meal, help with incontinence, day care and residential care. My OH does not (yet) need help with showering and dressing and is not incontinent and I am home and do cooking and laundry, so the only thing I was offered was day care. Unfortunately OH refused to go and he has also been too unwell recently needing lots of doctors appointments. I intend to try again in the new year.

    All of the things offered by the Local Authority (as assessed by Social Services) will be means tested. Only your mums finances will be taken into account and if she has more than £25,000 assets she will be self-funded and will have to pay for her care herself. If she has less than this then the LA will work out her contribution - if her assets are less than £14,000 she should be fully funded.

    Once you know what can be offered by the LA, then is the time to decided if you need anything else (which would be privately funded) and get in touch with charities (like AgeUK) or care companies.

    I hope that explains a bit more how the care system works.
     
  15. Lindie16

    Lindie16 Registered User

    Nov 25, 2018
    37
    Thank you so much
    I will be getting in touch with local authorities tomorrow
    Thank you
     
  16. Lindie16

    Lindie16 Registered User

    Nov 25, 2018
    37
    Thank you for sharing your experience with me
    I am heart broken as mum is so physically fit. Watching her mind slip away each day takes a little bit of me along with it.
    I am hoping to get funding for care home as £1000 a week would not be affordable for me. I am the only one working at the moment and although we have been trying to save it won’t make a dent in £1000 a week
    Thank you so much
     
  17. marionq

    marionq Registered User

    Apr 24, 2013
    5,738
    Female
    Scotland
    @Lindie16 you don't have to raise the money for care. An assessment is about your mothers finance. Under no circumstance give details of your own income or savings - only your mothers.
     
  18. Lindie16

    Lindie16 Registered User

    Nov 25, 2018
    37
    Thank you for the advise
    Much appreciated
     
  19. la lucia

    la lucia Registered User

    Jul 3, 2011
    591
    Social services are who you contact about care help.

    But this Alzheimers Society website is full of information and leaflets about dementia so probably a good idea to have a read.

    Also, you can try and Google for the number of your local Community Mental Health team and ask them to visit to assess for medication to help. Some areas you can refer yourself but it will say on their website. If you can't call them directly then ask the GP for an urgent referral.
     
  20. Lindie16

    Lindie16 Registered User

    Nov 25, 2018
    37
    Thank you very much for your advice
     

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