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. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    I have been struggling alone with my Mother's 'mixed dementia' diagnosis for 3 years. Her diagnosis was hindered by the fact that she suffered from Meningitis when she was pregnant with me, some 57 years ago. This left her with short-term memory problems, decreased logical ability, a tendency to be 'difficult' or even anti-social at times, yet completely almost inappropriately social at other times. Whilst she held down a number of jobs, Mum usually left due to the embarrassment caused by not remembering who had given her what work and also because she appeared to be 'odd' to some people. Her colleagues then shunned her. She has always had the kindest of hearts but was given to mood swings and I grew up mostly treading on eggshells but understanding that Mum could not help the damage that had caused her whole personality to change. My loving Father, despite the increasingly huge burden to his long-suffering patience, stayed with Mum until he passed away in 2012. Whilst I think he knew Mum was already in the very early stages of dementia, it was difficult to differentiate between the increased difficulties due to the simple fact of ageing, coupled with the previous brain-damage and the onset of dementia itself. Once the diagnosis was made I realised I had the most difficult of journeys to make and this is the first time I have sought support or information, other than the leaflets handed out by the various medical bodies.

    Mum's situation is that she still lives at home alone in her bungalow but now has acute physical difficulties, does not cook (she left the gas cooker on) but hasn't cooked properly for years, lives on sandwiches or occasionally soup from the microwave, her personal hygiene is suffering, she is hoarding, cannot clean effectively if at all, she rambles at times and makes up 'memories' often linked to things she has heard on the TV. I have had social services visit a number of times but I don't think they are too shocked either by her condition and weight loss or the condition in which she lives. It took me 18 months and a very forceful conversation to get her to agree to having a 'fall alarm' fitted. Mostly she refuses to wear the pendant and lies that she has just taken it off. A very good Occupational therapist who has visited Mum once and is returning in 2 weeks. is my only contact. She completely understood the complexities of the situation. Mum, despite being chronically crippled with arthritis in her feet, refused every single offer of help from her, both with simple aids like handles or bars/ramps in the home, to home help, meals delivery and everything in-between. She actively disliked the SS personnel who tried to help and will not entertain them. Even with an open sore on her ankle it took the wisdom of Soloman to convince her to have the dressings attended to. No amount of persuasion will get her to allow me to help in any way, not with cleaning, helping with her personal hygiene, cooking etc. The only area in which I am allowed to help is by taking her shopping in my Dad's car (which we have kept) twice a week. Fortunately, she is still able to shuffle on and off the bus but she is unsteady and has already had a number of falls. As I am an only child I feel the responsibility of her life and the quality she has, resides with me. I am tormented by her illogical arguments against absolutely anything which would give her a better quality of life. She can be demonically aggressive towards me when I try to gently persuade her to agree to something for her benefit, then turn almost into a simpering child, crying and saying she is sorry she is like this and what would she do without me. This happens when I am leaving. I hate leaving her alone but when I offer to stay she says she has to "sort out the room" (this would take days...) and really meaning she doesn't want me to stay but... perhaps next time. Sometimes I dread going up to see her, especially if she has been difficult and argumentative on the phone. Sometimes she rings me 6 or 7 times an evening and I know she is lonely and also forgets things she wants to say. I have tried to persuade her to live with us but she has no interest in ever leaving her home, which I respect. We have offered to build a Granny annex - she is adamant that I am too busy to have her living with me. I find her self-contradictory rants, usually aimed at me, demoralising but I know she cannot help herself. My question is when will I know that she absolutely has to have help, if not from me then from who? How do I get her this help? I spend most of my time worrying when I cannot get hold of her on the phone, even though she often just lets it ring, dials 1471 to see who has rang her and then calls back. But occasionally she will not answer and I then drop everything and drive the 40 minutes to her home to find she 'has not heard' the phone ring. Its is the most challenging situation to experience as I never feel I ever achieve anything other than keeping her company for a few hours twice a week. There are no other family members who can help and Mum has no friends. Even gifts I have bought for her, like a new radio, a walkabout telephone, a foot spa, clothes, lightweight vacuum cleaner, have been returned. Luckily she is oblivious to the stress it causes me - how do others cope?

    At the beginning Mum's GP told me I have to wait for something bad to happen - this is appalling. Her medication is in a constant muddle and she is too-ing and fro-ing every week between the pharmacy and GP. I never get to speak to the same GP twice running and I get the impression they would rather not have to deal with her or me for that matter.

    When her mixed dementia diagnosis was made Mum was offered medication, on-going monitoring, social activities and every single offer was quite rudely refused As we left, the clinical psychologist wished me luck. I have POA but have no idea how or when to invoke this and feel constantly worried and frustrated. Having read so many other posts, mine sounds trivial - there are people suffering from so much more. Perhaps this is just a good chance to get 3 years worth of struggle and worry off my chest. This disease is cruel and insidious in so many ways. My OH has no idea of the toll this is taking on me.
     
  2. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    I think from reading your post you know that your mother needs help now. You like me would rather she didn't but from what you have said you know it will be an uphill battle with her and the authorities. Unfortunately the gps comment about nothing will help until an emergency occurs is now a common practice. Cost cutting I'm afraid it seems.

    I would start to put the POA in action now if I was you at least then you can use it if need be, and if not then you don't have to on that occasion.

    I would think when your Mum says she doesn't hear the phone she maybe sleeping a lot like my parents do, and her hearing maybe going too. She may not want you at the house or permanently living with you as in her head she knows that something's she does aren't what she would have done previously, but can cover them up without you knowing if you aren't about. They are very good at deceiving and being sneaky too.

    When speaking to people like GPs and Social services use the terms 'duty if care' and 'vulnerable adult'. If you feel the GP isn't helping speak to the practice manager. Have you had a needs assessment done by council or has she not allowed you too?

    Have you thought about installing a CCTV type device in the house so you can keep an eye on her without having to run around in a rush every time . I saw a clock advertised today with a secret spying device but not sure if it's constant recording or only a short period of time. Looks like a kitchen clock, very clever idea. I know you can get apps on your phone that link to cameras in the home . Or maybe a neighbours phone number would be handy just in case you could ask them to pop around or see if there are signs of life like TV on etc or if she's in the garden?

    the medication can be sorted by the chemist doing a dosette box which gives the appropriate tablets in a pill box. Whether she takes them as she should is another thing, but a carer coming in could ensure that.

    Welcome to TP too you found a great source of helpful people who know just how you feel. Take care and keep us updated.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    Oh my, that brings back memories :(

    One of the problems of dementia is that they do not know that they have problems. To you, me and everyone else it is blindingly obvious, but people with dementia really and truly believe that they are doing everything and that there is nothing wrong.

    I had all the same problems with my mum. She maintained that she didnt need any help and would not allow any carers over the doorstep. She insisted that she did all her own cooking, shopping, laundry, housework and gardening even though the most cursory of glances would tell you that she was doing nothing. She was also not washing or changing her clothes and not eating or drinking. Like you I was at my wits end. Her GP and SS both said that if she refused help there was nothing that they could do. Im sorry to say that I never did find a solution. I organised a cleaner for her, but mum dismissed her as "she was stealing from her" and half the time she wouldnt even allow friends in as she thought they were stealing from her too. I too saw the personality "flips" where she would say how lucky she was to have such lovely family and friends and how grateful she was for everything they did and then, 5 minutes later she would say really horrible things.

    Im sorry, Im not being of much use except, perhaps to reassure you that you are not alone. Eventually the crisis came for mum in the form of a TIA which landed her in hospital. She was assessed while in hospital to not be able to live independently and went into a care home from there. So, you see, it did work out and mum is now content, safe and looked after, but the time before-hand was one of the most horrible times of my life.

    BTW the "making up" of stories is called confabulation - basically the brain is trying to "fill in the gaps" of the missing memory, she is not doing it on purpose. We have had some wonderful confabulations from mum including that she was secretly married to the local vicar!
     
  4. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    Thank you MrsBusy - it is comforting to know other people understand and are willing to give the time to advise. When you say "put the POA into action" what does this mean? Is it that I can force a situation - i.e. insisting on care visitors, without my Mum's agreement. I have thought about this but she would not give them access. I am going to speak to the Practice Manager today as Mum has an appointment on Wednesday. She used to allow me to go with her, now she doesn't. The last visit I made with her in July resulted in her refusing to listen and leaving. She was shaking with temper. The needs assessment ended in a similar fashion. There was a young man and an older lady - Mum made comments on the sexual orientation of one and the colour of the other. I was horrified and they did not seem bothered but neither could they do anything other than give me a list of care homes. The clock video is a great idea and she may not notice as there are already 4 clocks in the kitchen. The dosset box did not work I'm afraid, Mum told the Chemist it was too fiddly and the one I bought was thrown away. The neighbours either side have helped when I could not get to her quickly and I'm so grateful.
     
  5. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    Thank you Canary - it sounds as if your Mother was in a similar situation as mine - all the denial and yet at a very surface level, carrying-on as normal even though, to family, it is anything but. Mum used to be house-proud and had her hair trimmed regularly but she hasn't washed it for about 2 years. I have come up against the same problems with the usual resources saying there is nothing they can do if my Mum will not accept help. This is where I thought the POA would be useful. Of course I have to balance insisting on her accepting help against making the situation much worse by causing her stress at introducing someone she doesn't want, in her home. I know she will not let them in either. Perhaps the GP at the beginning was correct in saying I have to wait for something bad to happen and it is this which frightens me more than anything - I am powerless to stop anything bad from happening but that might be the trigger which, as in your Mum's case, brought about some help. At least I know that it is quite a common situation. In the meantime I am going to speak to the Practice Manager and get a spy clock or a some kind of device which allows me to know she is up and about. Your advice is appreciated.
     
  6. Plymum

    Plymum Registered User

    Jan 9, 2014
    139
    Just wanted to let you know that I too was in your situation until February of this year. I invited the SS to see my Mum twice in 2014 but she was able to say "I look after myself thank you very much" which was totally untrue, and the SS told me that until a crisis happened they couldn't force help upon her.
    In February Mum fell at home whilst I was away (found on the floor by a friend I had asked to keep an eye on her) and ended up in hospital. Then the SS took over and told her she had to have help after a stay in hospital. The team of carers could then report to SS that she was not eating, taking tablets, washing herself, cleaning the house, shopping etc etc. Mum was then told in a firm voice "Either you have carers in to help or you will have to leave your house" She made a fuss of course but I had POA and had to tell myself I was taking charge and that in the same way that a child would argue they didn't want to do something I had to protect her as she was no longer able to recognise the dangers. We are now 9 months further on and my Mum cannot remember a time without her carers (she even calls them her friends now !!) She has 4 calls a day and a cleaner twice a week.
    Hope things work out for you as I know how stressful it is when a Mum resists help. If I can offer any advice please ask. Chin up X



    Plymum
     
  7. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    Thank you Plymum - I can see the road ahead means exactly what the GP said 3 years ago and that 'something bad' will happen. All I can do is minimise that as best I can and hope for the best. Reading so many posts on here has helped enormously and I have learned that despite everything I try to do I cannot control every aspect of Mum's life. I read the mantra which describes how people with dementia should be treated/handled and did not realise I have been following these guidelines for ever without realising it. Yours and others help and support is truly appreciated as I now do not feel so overwhelmed, guilty and despondent. Much gratitude and hope your journey with your Mum is a path easily taken. X
     
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I am so sorry you are in an almost impossible situation. My Mum was like that in the beginning but she came round quite quickly when she saw how positive the help she was receiving was and then just had odd times of being angry but she remained fiercely independent always!! it is so difficult and made me feel helpless. You are doing a great job of keeping in close touch and doing what she will let you do, never under estimate how important that is and how important you are in her life - seriously!

    Everyone has already suggested everything i would have done and you have tried everything. She is losing out on Attendance Allowance, you can apply on her behalf but would save a lot of hassle if she signed it and cooperated with you filling in the forms but it sounds as though this is a step too far!

    This is very useful for you http://forum.alzheimers.org.uk/show...-with-the-Memory-Impaired&p=413710#post413710 and gives some very handy advice to reduce stress all round
    Thinking of you xx please keep posting
     
  9. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    Thank you Fizzie - I have learned through my life to avoid confrontation with Mum at all costs. Reading the link you kindly supplied made me realise my father and I unwittingly discovered the best way of dealing with Mum was by adopting many of the strategies employed in coping with dementia sufferers, albeit Mum originally had a different problem. I now realise my expectations must be more in line with what my Mother's wishes are, not what I believe is best for her, no matter how difficult it is. It's akin to watching a toddler wobbling towards a hot radiator and not being able to simply scoop the toddler up in order for him not to be hurt. At least TP has shown me I'm not alone and at the moment I have much to be thankful for.
     
  10. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    The sad next step.

    Since my first post at the end of November my Mum has indeed had the crisis her GP predicted and is now in hospital. I called for an ambulance on Friday after rushing round at 3am because she said she was in the chair in great pain with her knee and could not walk. The previous day I had taken her shopping. We had a 6 hour wait in A & E and eventually they drained her knee but were very concerned about her varicose veins and general health. The relief for me was that at last someone would see what I could see that Mum needed help. It's now Tuesday and I am consumed this evening with guilt at leaving her so vexed, angry and confused. Alarmingly her dementia seems to have worsened and I feel that in some way I have pushed her further down this road. I know I haven't but, I can see how she managed to hide much more than I was aware of by living a pattern which enabled her to cope. Now that repetitive pattern is disturbed by her being in hospital, her dementia has leaped forwards. I feel frightened that I am going to make her situation worse by either doing nothing and leaving the medical profession to make all the decisions, or intervene and end up creating a situation which is worse for her. How do other people cope with this? It is so sad to see someone you love fading and yet fighting to stay in the real world. They have performed a test for DVT and I was told they would also do a brain scan. Mum is still on the clinical diagnosis ward waiting to be moved to a medical ward.
     
  11. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,030
    Yorkshire
    HI Otiruz
    your post is both saddening and heartening
    as you say, the truth is coming to light - it is not a reflection on your care - it was going to happen some time
    now, hopefully, your mum will be properly and fully assessed - so let the medics do their thing and await the outcome
    take some time to breathe and just keep an eye on her for now
    I hope you get some rest
     
  12. Sterling

    Sterling Registered User

    Jun 20, 2013
    69
    Speaking from my own experience of taking my mum to A and E where she was sectioned there came a point when I had to step in and not cover up for mum. She was furious with me but I have no experience of the care that she needed. She was in complete denial and had refused all previous help. I took her to a place of safety where she could finally get diagnosed and sorted out. She is still in hospital but she has no recollection of that time and thinks that she was invited to stay. Please don't feel guilty - know that it was the right thing to do.
     
  13. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    You are right of course - I am desperate for things to be 'sorted' but for now I know her medical health is being addressed. Thanks.
     
  14. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    It feels a very lonely journey for the carer. Like your Mum, mine too has refused absolutely everything, even down to putting a rail into the toilet instead of using an ASDA bag tied to the door handle to pull herself up with (it's been there 3 years). Sterling, I believe we think we know what is best for our loved ones but are full of doubt. I hope your Mum is now happy and safe.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    Hey Otiruz, I responded to your original post back in November and your experience reflects mine. Mum ended up in Hospital after a TIA and everything that I had reported and no-one had taken any notice of came to light. She went into a care home following the stay in hospital and has not gone back home.
    Do not think that anything you have done has made the dementia worse. Sadly, dementia is a progressive disease. You have done your best for your mum and she is now safe and being cared for. What will happen now is that the doctors will get a diagnosis and once the problems with her knee/DVT are sorted they will involve Social Services to find out what to do next. You must make sure that SS are aware of what you can and (more importantly) what you cannot do. Make sure you say it loud and clear - so often the parent with dementia says "oh, my son/daughter will do that - I dont need any help" :eek:
    A difficult time for you, but hopefully things will be resolved.
     
  16. Sterling

    Sterling Registered User

    Jun 20, 2013
    69
    It is a very lonely journey for the carer especially for me as there is no else to take care of mum. I am battling SS now as they want to send her home with a care package despite all the NHS professionals and I saying 24/7 care is in her best interests. Thank goodness for TP!
     
  17. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    Canary can I please ask you what tests were carried out for your Mum's TIA? Since Mum went in on Friday with a swollen knee, I've been told they are treating her for DVT and have performed a CT scan - no one can tell me what they have found, or what they are looking for. The consultant said on Sunday that Mum was a bit 'rambling'. She is definitely more confused - could a TIA cause this. She is eating very little but on a positive note is much more mobile.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    They did tests like was she able to moves her arms/hands and legs/feet properly?; was her grip stronger on one side or the other?; could she move her facial muscles and her eye tracking properly?
    The scan was used to find out whether a stroke or similar showed up and to look for evidence of dementia. In mums case the Alzheimers showed up on the scan, but it doesnt always.
    If your mum has dementia then things like a hospital stay usually make the symptoms worse, so this could well be the cause of the increased confusion.
    It sounds to me like they are trying to get as much information as possible before making a diagnosis. They might get someone from the memory clinic to see her while she is in hospital, or there might be an appointment sent later. Mum had an outpatients appointment after she was in the care home, but different hospitals have different routes.
    At least everyone is now aware of the problems.
     
  19. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    Thank you Canary - that is very helpful. Mum now on a medical ward so I am feeling more optimistic for her.
     
  20. Otiruz

    Otiruz Registered User

    Nov 28, 2015
    255
    Kent
    Hi Sterling, how it is going with SS - can you please explain why you think 24/7 is best and why SS think it isn't? My situation is probably not quite as advanced but I get the impression the hospital want to put a good spin on things and send Mum home. I won't go on as I am now convinced we are all trotting down a path full of potholes and puddles.... learning how to deal with them (or better still, circumnavigate), seems to be the best option.
     

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