1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Pear trees

    Pear trees Registered User

    Jan 25, 2015
    441
    My mum is due her annual review at the memory clinic shortly. She hates it, thinking the tests are stupid and calls it an interrogation. She is rude to the nurse and consultant, and is unco-operative with all the tests. Last time when asked to write a sentence she wrote 'I don't like this stupid *****' meaning the nurse! Although her memory is poor she remembers the building and refuses to go in, then after the review it takes ages to calm her down again.
    The next review will be at her home. She will not allow anyone in her house except me my husband and my SIL, and will not have carers or meals on wheels, shutting the door in their face or being rude and aggressive if they let themselves in via keysafe. She self cares currently but fights us when we try to clean the house. This is not new, she has always refused visitors, even other family members and has never done housework!
    I need to get her assessed but need advice on how to get it done without distressing her too much. They may discharge her if the review is not carried out.
    She refuses to go into a home and my brother agrees with her, but only because she would be self funding and he is protecting his inheritance!
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,714
    Female
    London
    To be honest, the Memory Clinic visits depress me too. I see OH struggling so hard to answer the questions but he can't anymore so next time I am going to ask them to forget about the MMSE test because there is no point to it anymore. The rest is usually only a chat on how he is and what help we get. So maybe you can agree with the doctor to make it more of an informal chat and go easy on the questions. They can feel like an interrogation.
     
  3. Delphie

    Delphie Registered User

    Dec 14, 2011
    1,252
    My mum also refused to cooperate. We got as far as the diagnosis but that was it. Refused medication, refused carers, refused to clean, to wash, to let me keep on top of her food... She thought she was fine and anything that suggested that she might need a bit of help was met with fury.

    I tried all sorts, but that was basically that, and whatever I did manage to do for her (like empty the fridge when stuff was well off etc) was done under the radar.

    My mum's consultant, SW and CPN were lovely and really tried to help us but the bottom line seems to be that while someone is judged to have capacity it's their right to refuse to cooperate. So, probably quite often, these situations stagger on until there's a crisis or the level of self neglect suggests capacity is lost. That's where we got to with my mum. Another winter of a freezing house was looming large and she was going to be sectioned (due to self neglect). I got her into a care home to stop that happening.

    Sorry I don't have any constructive suggestions. I just think it's also worth knowing that sometimes out best efforts won't have much effect, is any. Everything we tried to help simply stressed my mum out, and me too, because of her reactions. Sometimes it's ok to say right, I'm not going to win this battle.

    The good part of our story is that the care home has turned out to be the best thing for my mum, given the circumstances. I didn't think I'd get her into one, and if I somehow managed that I didn't think they'd get her to stay. But things worked out and she's miles better off there than she was at home.
     
  4. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    I have been in the same situation with my aunt for some time now and have gone over all the options in my mind and with SS over and over again but always come to the same conclusion which is that it will probably take a crisis to achieve a step change in her care.

    If you are doing all you can to help and trying your best to get her to agree to/attend the reviews and other important appointments with GP etc., then there's not much more you can do.

    If you can accept this, you will feel much better about yourself and the situation in general. Your mum is probably happier living like she is than if she was forced all the time to do things she doesn't want to, even if it may be better for her health and well-being.

    My aunt's house is in such a state you would be shocked, but she seems content living in it because it is familiar to her. We try all the time to persuade her there is a better way, but she refuses almost all offers of help and assistance and nobody is allowed in.

    I could let myself get depressed about it, but the fact is she seems quite happy and I don't see signs of sadness or depression in her.

    I'm just going to carry on making improvements to her situation here and there whenever I can and make sure all the groundwork has been done so that when the inevitable happens, we'll be ready to put her into a much better environment, whether that's another family house, assisted living or a care home.
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    My Mum was the same. In fact she was never ever properly assessed because she treated staff the way your Ma does and I fully anticipate that I will also go down kicking. I figured it wasn't a good idea to distress her and so that was that. I wouldn't worry too much unless you really feel they are doing good work with your mum - my personal experience is that the majority of people I have spoken to about the memory clinics think it is a total waste of time and just used for stats - unless of course you are having meds which didn't apply in our case as my Ma had vascular dementia

    In terms of the house, I'm afraid I did distress her just to get the basics done but to be honest it was quite easy once the initial toot had been cleaned to keep it tidy. I used to go to the loo and spend a while cleaning the bathroom, make a cup of tea and spend a while cleaning the kitchen etc and making the bed - she used to 'help'. So the daily stuff was sorted pretty much - although I have to say that I was a very frequent daily visitor so that helped as little bits could be done each time

    My aim was to stress her as little as possible
     
  6. Bernadette2

    Bernadette2 Registered User

    Mar 13, 2015
    27
    Hello
    My mum hated these appointments too - it took us many years to get her diagnosed in the first place because she refused to do more tests... I hated it too because the doctor would ask me, in front of Mum, about how I thought she was and it was such a heartbreaking betrayal to tell him the truth. In the end I contacted the consultant before her next appointment and asked him not to do the mental test but to just have a casual chat and if he could question me without mum there. We both find it all much easier now...
     
  7. beverrino

    beverrino Registered User

    Jan 12, 2015
    1,111
    I find it difficult to understand sometimes how these people are trained at the memory clinic. I am expected to talk about her - in front of her - and although she doesn't appear to bat an eyelid - I feel like a traitor and unable to give the full picture. Then they sent a letter to the GP detailing their findings - painting a not very nice picture of her - and sent her a copy of the letter!!! I was furious - she was really upset that evening and although she said nothing I knew what had done it. The only good thing was as I removed the letter she had forgotten about it - she knew something had upset her but couldn't remember what.
    I rang the memory clinic and complained - they were most apologetic - and asked for any future correspondence to be sent to me - this was agreed.
    Then about a month later - she got another letter!!!
    If they deal with dementia on a daily basis - how do they not understand this? And last time we were there she was asked questions that they should have known she couldn't answer - it baffles me!
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,540
    Female
    South coast
    Re the letters.
    This will be due to the person who typed up the letter - who may have been someone in a typing pool, rather than someone specifically dealing with the memory clinic. They were probably also using standard hospital letter templates which automatically bring up the names and addresses of where the letter has to go and who to send a copy to. A lot of hospitals dictate that the default position is that a copy of the letter is sent to the patient, although it can be manually over-ridden. If a doctor wants a letter to do somewhere else rather than the patient then they put a note in the hospital records or add a note when dictating the letter, but if the typist misses the note, or forgets, then the letter goes to the patient anyway. :(
     
  9. JayGun

    JayGun Registered User

    Jun 24, 2013
    298
    We say exactly the same things Beverrino. We hate speaking about MIL in front of her - she doesn't remember the things we're talking about so gets incredibly ragey and calls us all liars.

    We also can't seem to get through to them that she's got dementia and LITERALLY doesn't know what day it is - so if they send the appointment letter to her she will chuck it out or make a bonfire of it and not attend. If they want her to actually turn up, they have to send us a copy of the appointment, because it's our job to get her there.

    We do laugh though they ask her questions like "how's your memory been?" And she says her memory is fine, she's been very lucky that she doesn't have any problems with that (!)
     
  10. Jiggsy

    Jiggsy Registered User

    Apr 6, 2015
    6
    There is no excuse for discharging her on the basis that she won't attend for her review, assuming that she has a diagnosis of dementia. It may be difficult in practice for the team to provide much help, but I am afraid that is their problem and discharging your mum is not an ethical or professional solution. In my experience, these situations often end with the person going into a care home, whether or not that is their preference. Things need to get to a pretty difficult state before that is authorised, and a doctor would need to deem your mum 'incapable', in the legal sense, of making sensible decisions for herself. In that case, your brother would just have to forego his share of the inheritance ;)
     
  11. Jiggsy

    Jiggsy Registered User

    Apr 6, 2015
    6
    And your point is!?
     
  12. reedysue

    reedysue Registered User

    Nov 4, 2014
    4,604
    Scotland
    :mad:
     
  13. canary

    canary Registered User

    Feb 25, 2014
    10,540
    Female
    South coast
    I was just explaining how it happens
    Its a system that needs changing, but the doctors probably cant change it.
     
  14. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,578
    Female
    Auckland...... New Zealand
    Even living down here in New Zealand my experience is the same.
    What is worse just when you have advised one Health Department at Hospital that you want all appt letters and correspondence to you, every Dept works independently and you have to advise each one.

    Mum got an appt letter for radiology once prior to going in for bowel surgery.
    What an uproar that caused.

    Mum had an appt letter arrive to see the Geriatrician.
    I cancelled it and asked Mums GP to send another referral letter for her to see someone that speaks English as their first language.
    Mum is Scottish. The Geriatrician Mum saw was of a different Nationality.
    If it was me it wouldn't be a problem, but with Mum understanding less and less ( she already said she couldn't understand this Geriatrician ) our Health & Disability Code states that you have a right to effective communication in a form, language, or manner that enables the consumer to understand information provided.

    How do we know if Mums MMSE test could be better/worse, if she is being tested by someone with a strong accent?
     
  15. Not so Rosy

    Not so Rosy Registered User

    Nov 30, 2013
    580
    Dad never actually visited a Memory Clinic, it was all done at home.

    I have to say we had a very positive experience so don't give up hope, but I think that was a stroke of luck that he had a fab Consultant and a brilliant CPN, who admittedly was off sick a lot but when he was around was a star.

    The Psych Team did more for Dad than anyone else apart from a real bright spark of a Social Worker who we only had for about 6 months but she tied the care agency into a really tight contract which enabled Dad to stay at home for at least an extra year.

    I was always there when the Team arrived, I never pre warned Dad, just opened the door with a surprised look on my face and used to say how lovely we have visitors, hope you have choccie biscuits and cakes in, which obviously I had just bought.

    The team were great with new meds, they sorted out AA without me even knowing and arranged for a charity to provide Dad with all new kitchen appliances because he had broken everything. Dad muddled washing machine with fridge etc, so we had pots and pans going round in the washing machine and clothes in the dishwasher :eek:
     
  16. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I so agree. Similar happened to my Ma and it is really important that we formally complain in writing or they will never sharpen up this system. This is totally unacceptable and the clinic is treating your mother as a non-person.
    Suggest you send a brief formal letter of complaint to the Trust. We do need to change these things


     
  17. Boldredrosie

    Boldredrosie Registered User

    Mar 13, 2012
    244
    See if they'll come to your mother's house. Some clinics will. Sometimes ours will but has declined to do so for quite a while. They also discharged Ma but have taken a referral from the GP again. I wouldn't worry about your mother being rude to them. These are the people, after all, who when I tell them how vile my mother's behaviour is they say "Oh it's just the dementia talking."
    I do think, however, it's important that she is assessed. This becomes germane as time passes and issues of capacity are being discussed. Those in authority need to see the decline and progression of the disease.
    I'm at a state now where I'm personally so worn out by my demented mother and my mentally ill teen that I'm thinking of moving out of the house into a bedsit just so I don't go totally loopy.
     
  18. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,578
    Female
    Auckland...... New Zealand
    Oh my gosh. This is exactly what has happened to me with Mum recently and I'm on the other side of the world.
    When Mum got a copy of the letter although they have my address for ALL correspondence, she was most upset, and although has never mentioned the letter since she has deteriorated considerably in the past 3 weeks since.
    Coincidence?! i don't think so...:(

    Confusion, anxiety, mood, sundowning you name it. And for the first time ever I have been called away from work, as Dad beleived Mum was capapble of making and remembering arrangements to meet him at his club after her Alzheimers group, and due to confusion ended up home alone. Just as well the lady that picks Mum up has my mobile no and called me to let me know Dad was not at home.
     
  19. marymary1898

    marymary1898 Registered User

    Hi Pear Trees
    So sorry to hear your visits to the memory clinic are so difficult. Mam looks forward to them, thinks it's a lovely, calm, relaxing place. Not sure how much that says about how differently this disease affects people, or, how different the service is. Probably a bit of both.

    The clinic mam has been going to for the past 2 years has it's problems, no doubts about that. But they seem to be restricted to the admin./appt. side of things. The people she actually sees couldn't be more helpful.

    When faced with the familiar problem of saying things you don't want to say in front of them, I rang and asked for an email address, this way I can say what I want to in advance of the appt. and no unnecessary distress for mam. They were happy to do it.

    They have sent someone to the house to do assessments of both her and her surroundings, have installed a new handrail on the stairs, offered to remove a step, (dad preferred to do it himself ), provided aids, and she will shortly be attending a 7 week Cognitive Stimulation Group.

    Mam can't speak highly enough of them. Again, how much of that is down to the disease or the service who knows. But it is a comfort to all of us to know they are there and treat mam so well.

    I'm curious to know if we are just lucky, are most really that bad?

    Apologies if I've hijacked your thread Pear Tree but I am very curious to find out the overall standard of these facilities.

    Wishing you luck with the next appt.

    Mary
    X
     
  20. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,425
    Male
    Cornwall
    Well I been attending the memory clinic or mental health unit for 16 years although most of my test are at home now , I,m actually got a visit from them tomorrow , not sure about others but in my case the results are then passed on to my GP the reason for my test is to check if the medication is working ( Aricept ) I agree some time the test are simple but sometimes there more intense can be two hours Personally I think it makes my brain work my problem is a lot of the questions I don't know the answer , for instance
    I was asked to point out from some animals a marsupial well because I never heard the word before obviously I had no idea what the answer would be so I tell them that
     

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