Might well becoming a regular on this forum so thought I would say hi.

Discussion in 'Recently diagnosed and early stages of dementia' started by Max68, Aug 21, 2018.

  1. Max68

    Max68 Registered User

    Aug 21, 2018
    66
    Male
    Sussex
    #1 Max68, Aug 21, 2018
    Last edited: Aug 21, 2018
    Well hi.... Not sure if this is the correct forum but here goes anyway so apologies if not.

    My mum is 82 and whilst she hasn't as yet been diagnosed with a form of dementia things don't bode well, hence why I thought I would post in this forum rather than the concerns page. She was widowed in 2000 when dad died at 59, never remarried and still lives in the family home. My sister and her family and I live locally.

    For the last couple of years Mum has been occasionally getting caught out by these parasites that phone vulnerable people and get them to pay for a holiday that doesn't exist or knock on door salesmen who tell you that your roof needs doing and then give your mum a lift to the cashpoint in their van (yes I nearly choked on my coffee when she told me that over the phone!!) Generally though she seemed ok but just getting older and not quite the strong, independent, intelligent woman that she once was.

    However things have started going downhill a lot more since January. Both her elder sister who had ironically been in a home suffering from severe dementia close to 10 years and her best friend passed away within 48 hours of each other. Needless to say it has absolutely devastated mum and totally and utterly knocked the wind out of her sails. Absolutely understandably as well as I cannot imagine losing my sister and best friend at different times let alone in such a close timescale. Suddenly this confident outgoing lady became a shell of the person she was before, not helped by the fact that as age took hold she had to give up her main passion, golf, which apart from the great exercise took away the camaraderie and companionship of others.

    Certainly depression took hold, along with a lack of confidence and belief and worst of all loneliness. She went to the doctors and was originally told it was all purely grief and it would take a long time, understandably, to cope with it. However in the last couple of months her memory has started to be a concern and she has asked me a lot more to help her out with paperwork that not so long ago she would have done with her eyes closed. At least she is asking me to help though and not hiding things, although upon looking at some of her paperwork, such as lending her gardener £2000 last year, yep you read that right, (albeit insisting he paid her back) I really am at a loss as what to do without severely upsetting her.

    With the memory it's short term stuff, like telling me the same thing 5 minutes later or asking me to check her TV because it doesn't work but it ends up only being batteries in the remote control, but it's getting more prevalent. I then decided a couple of weeks ago that maybe we should swap her bank account to the same bank as mine because her old branch has closed down and the other local one has got terrible parking options. Also because she was getting worried this holiday company kept ringing her saying they would take more money out I managed to tell her that worries like that would go with a new account because they would not have access to her new account number. I considered third party but mum had a panic attack saying she didn't want me to have any control, which was obviously upsetting but I accepted that it's her independence and it is quite clear the thought of losing that terrifies her. However the bank noticed something was up as mum kept going on about her debit card not working which was because she thought she had lost it, so cancelled it, but found it again so she was trying to use a cancelled card. She mentioned this about three times in five minutes so I think the bank understand what might be going on.

    In the meantime I took her to the doctors after we had to call an ambulance when she phoned me saying she was sick, dizzy and couldn't move and fortunately mum gave the doctor permission to speak to me about her medical situation. I managed to ask the doctor to send mum for some memory tests without making a big deal out of it and the doctor has referred her although I won't tell mum until the time is close because there is an 8 week wait and I don't want her dwelling on it. All other blood tests were fine and the doctor has changed some of her meds. With the blood tests being fine it was bitter sweet because obviously I was pleased all was ok but was secretly hoping it might have shown a low potassium or something easily cleared up that was causing her problems.

    Since then I have driven her around as she no longer is confident in driving and got her to speak to Time to Talk (counselling service) and have got her to join a coffee morning and the local Age UK site where she had her first Chairobics on Monday which despite wiping her out and making her use muscles she hasn't used in years (good news) she seemed to enjoy it and needed the company of older folk like herself and I hope she continues as if I can get her happier that's a start.

    My cousin had noticed things when speaking to mum on the phone and of course since her mum (mums sister) suffered with dementia my cousin knows what she is talking about but says there are many possible reasons and types of dementia why mum could be like this although she will probably just be saying that not to concern me. Mum herself must be terrified after seeing what happened to her sister and just says she is losing her marbles.

    We already have Power of Attorney Health and Finance all done last year so at least we have done that and I was made redundant in July so at least for now I can fully focus on mum although I am sure the Job Centre will start having a pop when I am not spending 35 hours a week job searching!! But quite frankly if things do not go well on the memory tests then I am at a loss on what to do. Part of me wonders if I should rent my house out and move back home, or make home adjustments at her house because she recently told me she just has sponge baths because she can no longer get in the bath which again was out of the blue, or maybe home care help or even move into some sort of care home, although mum says any move will kill her. Other worries are If I get a new job soon how accommodating will a new employer be if I have to be on call for mum, which I want and have to be?!

    I, like many on here I am sure, am just so deflated and devastated and have absolutely no idea what to do for the best.

    So sorry for the extremely long post but I just had to get all of my thoughts down on paper. Thank you.
     
  2. Juniorjunior

    Juniorjunior Registered User

    Aug 13, 2018
    26
    Hi. I'm so sorry you are having these experiences with your mum. My very initial advice is to not make any huge decisions YET. Moving home is a big decision and although may be necessary in future, sounds as if it might not be essential just now. With my mum this decision is nearing but she continues to live with my daily support and visits, after my full time job. Lots of guilt on my part and phone calls to check up on mum, but managing.
    A request for social work assessment for support and for occupational therapy for equipment (getting in out bath) might give you a starting point. Memory clinic and possible diagnosis should allow access for post diagnostic support. Not sure how this works in other areas but local dementia services can help.
    We haven't accessed these services as mum didn't really engage with medical services easily (lifelong issue) and no major behavioural issues needing "managed". Mum also not very socially minded and now finds social contact overwhelming. I thinks she is aware that she isn't always able to follow conversation
    Mum was also struggling with accessing pension with card and eventually I took this and initially we would visit post office or bank together. I also have power of attorney and registered this with bank to ensure I could access in an emergency or to check what was a "story" and what was real. I removed a large amount of saved cash from home and deposited in bank to avoid any option of this disappearing either by accident (she does like a regular change of hiding places) or through malicious bogus callers. Paranoid anyone I now leave mum with spare cash in her 3 purses so she feels secure but its a sum which I feel comfortable should it disappear.
    I am constantly trying to saviour the good moments and days, manage the difficult times and try to plan ahead without going a bit mad thinking of a million what ifs! Some days are easier than others.
    Sorry to have rambled on, still finding my own way with my mum.
     
  3. Angela57

    Angela57 Registered User

    Jan 22, 2016
    195
    #3 Angela57, Aug 21, 2018
    Last edited: Aug 21, 2018
    Hi @Max68. You will find lots of support here from other members who have far more knowledge than me, and I cannot help much, I'm afraid.

    Try to take things one step at a time for your own sake and your mums? Lots of us don't know what to do for the best throughout the dementia journey, for our PWD, and often for ourselves too.

    It can take some time to get a diagnosis. So I would bullet point all of your concerns about your mum that you have mentioned on your post and take it to the GP at the memory assessment to read, it may help. Or if possible, get it to the GP before the memory test.

    With regard to work, I find it terrible that most employers are understanding towards parents with children, but don't have the same understanding for carers living with and caring for a PWD, or even a vulnerable, elderly parent who inevitably has emergencies. But, hopefully you could use a care agency with regular visits while you're at work to help.

    I hope others can give you more and better advice. X
     
  4. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,827
    Male
    Bristol
    Hullo and welcome to Talking Point, Max.
    So much for you to deal with and plan for, but as Juniorjunior already suggested a Social Services care needs assessment would be a good place to start. They can advise on having carers in to help with bathing and other personal care. Getting a carers assessment for yourself would be another step, if you have not already done so. Would it be worth considering applying for carers allowance rather than jobseekers as that gives you more freedom to find work when you are ready to do so.
    I hope any of that helps, but there's always plenty of good people who can advise and support you on here.
     
  5. Max68

    Max68 Registered User

    Aug 21, 2018
    66
    Male
    Sussex
    Thank you so much for your kind replies. Juniorjunior please don't apologise you weren't rambling on, more than happy to be a sounding board for anyone else so always an ear if needed.

    Thanks I didn't know about a social care needs assessment although someone told me about an Attendance Allowance mum might be able to get that isn't means tested and re carers allowance that's an option but I guess it's a case of waiting until some sort of diagnosis.

    Any ideas what to do about this gardener though? Mum swears by him and his family and almost considers them friends but he goes regularly to do the lawns at £28 a pop and has done things like reset the patio for around £400. Not sure if it's him suggesting things or mum asking. Have met him once and he seemed a nice fella but that's before I stumbled upon some of his charge spreadsheets. He is on the internet so looks legit and may well be just a good gardener but expensive so can't accuse him of anything as that wouldn't be fair and don't want to force mum in letting him go and using someone else but at the same time I don't want her getting ripped off. Such a dilemma.
     
  6. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,490
    The gardener sounds a bit pricey to me unless she has a very big lawn. I suppose it depends on where she lives. It would obviously be dearer in London but my dad's gardener used to charge him a tenner to do his lawn. He also did a couple of other neighbours gardens at the same time so he would earn thirty pounds for probably an an hours work. He always bought his own mower and it was a little while ago now. I think he had quite a lot of customers in dads village and was well liked. I think he was a pensioner himself and was just supplementing his income here and there. I don't think he did it full time.
     
  7. Max68

    Max68 Registered User

    Aug 21, 2018
    66
    Male
    Sussex
    She does have a pretty big lawn at the house and lives in the South East so it won't be cheap. I don't have a lawn so not sure what the going rate is. I have mentioned that he seems expensive to mum and told her I was shocked that she lent him money per se, let alone that amount but she just got a bit defensive. Personally if you are a professional you don't ask customers for loans but maybe he had some sort of story and mum offered, then insisted so I'll never know the circumstances. Laying down the law will just antagonise him and upset mum so I might just try and have to keep an eye on things for now.
     
  8. Max68

    Max68 Registered User

    Aug 21, 2018
    66
    Male
    Sussex
    Well trying to make things easier has only added more stress!!!! Decided with mum to open her a new back account at my bank which meant concerns about anyone dodgy having her details could be put to bed and whilst I am not in charge of her account at least the bank know me etc etc. It should have set off alarm bells with me at the meeting with my bank that mum only qualified for a basic account so she couldn't borrow or have an overdraft but she doesn't need that anyway so not an issue. I have a current account so have no knowledge of a basic account so the alarm bells didn't register. Unfortunately what the advisor failed to mention, until the switch had taken place, was that mum also wouldn't receive a cheque book!!

    I only found this out when I went to ask for one to be sent to her and was informed that no cheque book is given for a basic account. Cue massive apologies from the original advisor which hardly helped because as I say the switch had taken place. I asked as to why mum had only been given a basic account now that I know what she won't fully get with one and bizarrely they can't actually tell you but "it was probably to do with her credit score!" Cue hysterical laughter from me because mum has a pretty high income, has plenty in her account, home owned outright, pays off her credit card in full and has no debts. Far better than me and I have a current account with them!!! I have checked her credit score online and it's right at the top so no idea why she has been refused bar maybe the fact that she is too good financially so there won't be a history of borrowing money or finance bar the mortgage that here and my late dad paid off years ago. Maybe her age comes into it too, I don't know. The annoying thing is they can't or won't tell you so you can't argue it.

    Anyway two choices now. Either stay with the current bank and I pay her cheques and she pays me, which in some ways would be an accidental way of seeing if she is overpaying anyone or move back to her previous bank who by all accounts even though the account is closed would set her up a new account with all the benefits she had before. I think mum just wants to go back to her bank. I'm annoyed at myself for not noticing this but how can a bank fail to mention something so important?!

    Anyone been in this situation themselves?
     
  9. Juniorjunior

    Juniorjunior Registered User

    Aug 13, 2018
    26
    Oh no. I feel your pain. It is so annoying when you manage to decide on a plan, manage to get time to execute your plan, complete your plan and at last minute realise this might have made life harder. Don't know how many times I have sat in the car crying with sheer frustration and a bit of poor me nesss. .
    Having said that, have also learned that sometimes unexpected advantages should be taken. If you are worried about your mum's generous nature being taken advantage of this might be excellent opportunity to go with new routine. If cheques are not possible with new account then you can be the link in any moneys going out. THis needs careful managing initially so you mum still feels in control. Also I found mum struggled with cheques quite quickly despite managing her business all her adult life.
    I have also found it is easier to blame faceless entities for changes to routines rather than the focus being on change to mums abilities or on me taking over. E.g. that pesky bank, annoying that it is so much nearer and easier to deal with but doesn't have as many facilities as.old one. I think in other posts these can be called love lies.
     
  10. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,527
    Female
    Re your last question about the bank - I'd leave it 'as is' as it means you can write the cheques. It will as you say give you control over what's happening and there will be no strange 'loans' disappearing from the account. As Junior says, you can probably 'sell' it to her in a way that works.

    Re her only being entitled to the basic account, do you know for sure your mother still has her savings - have you seen recent statements?

    By the way, I wouldn't rely too much on a Social Services needs assessment. If your mother says she doesn't need help, they will take her word for it and disappear off the horizon.

    I found that one of the first signs of my mother's dementia was her inability to manage her money. Some disappeared to 'friends', then she couldn't remember how to transfer money to her current account, so her rent didn't get paid, utility bills bounced, and she got in a total panic about it - that did at least mean she was happy for me to start using the POA.
     
  11. Max68

    Max68 Registered User

    Aug 21, 2018
    66
    Male
    Sussex
    Thank you. I think I managed to convince her today that it would be a good thing to leave it as it is for the time being. We went into the bank to pay her Barclaycard bill and she was in such a muddle, it's quite worrying as only a few months ago she seemed to be coping. Yep seen her latest statements and her savings are there and the bank were really helpful and said that paying off her Barclaycard in full and as her DD's get paid if we reapply in a couple of months she may be able to claim a full account although I won't push it as right now at least I have some control on what is going out.

    It will be interesting to see how her gardener reacts when he knows I am going to be paying him as I noticed on her bank statements and cheque book from her previous bank some rather hefty payments to him within a couple of months and I really don't know how to approach this. When I send him a cheque I may explain that currently mum doesn't have a cheque book so I will be forwarding his payment and may ask politely if he can forward me a statement of paid monies and work done for mum for the last two years or something. Will be interesting to see if he does and if he forwards a fully honest sheet.

    I am also wondering if I need to keep a record of finances between mum and I. As I am carting her about, as she puts it, she is paying for my petrol bless her and also other bits as I am unemployed. I am concerned that this can be taken as "gifting" money with regard to Inheritance Tax. Bloody awful that I am starting to think like this but suddenly everyone's mortality has suddenly become real.

    I have booked an appointment with mums Financial Advisor so he will probably be able to advise as there is some concerning stuff I have recently found. Mum a fair few investments and Life Insurance/Assurance policies and there are some letters she has just left to one side, probably because she now doesn't understand them and I haven't got a clue and am very worried if she needs to do anything about these letters. Also if she gets a diagnosis I don't know if I need too let the likes of Life Insurers know. It's driving me potty so god only knows how mum feels!!
     
  12. witts1973

    witts1973 Registered User

    Jun 20, 2018
    676
    Male
    Leamington Spa
    #12 witts1973, Aug 28, 2018
    Last edited: Aug 28, 2018
    If your mum gets attendance allowance you can claim carers allowance and that will get the job centre off your back,it's a similar amount but you can claim income support which is an extra £90 per fortnight,with regards to LPA get a couple of signed copies from your solicitor that set it up and send them off with a cover note to any utility companies or pension companies etc and they will send documents and letters care of yourself acting for your mother,as at the moment they won't deal with you until you do that,in the cover letter make sure you tell them that they are to return the signed LPA as they can scan or photo copy it
     
  13. Max68

    Max68 Registered User

    Aug 21, 2018
    66
    Male
    Sussex
    Thank you....

    I've just been searching Google because I was concerned about a few phone numbers she has called at Premium rate. She got caught this morning by one of those calls threatening to be the HMRC saying they had a case against her. Ironically I had one as well but before I could warn mum in case she received one she had already called that number. Fortunately it seems she just told the scammer to send everything in writing but I'll keep an eye on the account!! The phone company said they would cancel that payment once it shows up which is nice as they didn't have to. The other premium numbers seem to be regular calls to The Suns Crossword line giving you 4 extra clues. Mum has always been great at crosswords but this seems to be a denial thing as she obviously can't do them on her own anymore so calls the number to get the clues at 70p a pop and of course probably feels happy that she finishes the crossword. Heart-breaking although credit to her I guess as I wouldn't be able to do a crossword with the extra clues let alone without!!!
     
  14. witts1973

    witts1973 Registered User

    Jun 20, 2018
    676
    Male
    Leamington Spa
    Is that a landline would it be possible to get any call filtering by service provider
     
  15. Max68

    Max68 Registered User

    Aug 21, 2018
    66
    Male
    Sussex
    Yeah I am going to look into this, apparently BT can bar certain numbers coming in. Doesn't stop mum calling out though. Caller display is a hindrance in this situation as mum will just call the number that rang whereas I will just Google it to see who it was.
     
  16. witts1973

    witts1973 Registered User

    Jun 20, 2018
    676
    Male
    Leamington Spa
    Where the scam calls not from a withheld number then if so they can be blocked if you opt out of receiving calls from withheld callers,I'm sure that's possible as they will try and call again if they thought your mother was pliable,I would also get no cold callers stickers for the glass on front door,I have them at home and they pass my house and don't knock,you can get decent sized bright ones from Ebay
     
  17. Max68

    Max68 Registered User

    Aug 21, 2018
    66
    Male
    Sussex
    Thanks Witts I wasn't aware BT did this now as last time I asked them they didn't have an opt out.
     
  18. nitram

    nitram Registered User

    Apr 6, 2011
    18,934
    Male
    North Manchester
    BT can also bar selective outgoing calls FOC
    You need to get beyond the normal help line to discover this.

    Network Controlled Calling
    • limits which numbers can be dialled
    • incoming calls not affected
    • up to 10 numbers can be assigned
    • free service
    • easy set up by BT

    We’ll work with you, a family member or principle carer, to agree a list of up to
    ten phone numbers that can be called. We then arrange a restricted service on
    the landline so that only these agreed numbers, the emergency services (999
    and 112) and BT’s Fault Repair Service (151) can be called.


    https://btplc.com/inclusion/HelpAnd...trolledCalling/Network_Controlled_Calling.pdf

    Note this list of ten numbers can only be changed once every three months.
     
  19. Max68

    Max68 Registered User

    Aug 21, 2018
    66
    Male
    Sussex
    Brilliant, thank you
     
  20. nitram

    nitram Registered User

    Apr 6, 2011
    18,934
    Male
    North Manchester
    Have a look at the free BT Call Protect (also available on Plusnet)

    http://home.bt.com/tech-gadgets/pho...help-you-banish-nuisance-calls-11364136279611

    Blanket blocking of withheld numbers is not a good idea, hospitals, LAs, utilities,...... usually are withheld. Although DDI (direct dialling inwards) allows dialling to extensions the line identity on outgoing will be the base number, security/reception, not the extension
     

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