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.

Where do I start...

Discussion in 'I have a partner with dementia' started by jikkie, Aug 23, 2015.

  1. jikkie

    jikkie Registered User

    Aug 23, 2015
    64
    My husband has Alzheimers, diagnosed December 2012. We have never been told what kind, it was diagnosed via mri. It manifested itself mainly by problems with speech/communication. I have fed him coconut oil and turmeric every day, and of course he takes the (useless?) drug. Now he is coming up to 82, and now it is apparent that his general condition is worsening weekly. I struggle myself because a lot of his behaviour is really just a worsening of traits that were apparent donkeys years ago - lousy manners, generally extremely self-centred and inconsiderate etc. The GP, having seen him shuffling around the village, suspects Parkinsons, and I think she may be correct. No tremors, which is course why I have never thought of it, but virtually all the other symptoms. She referred him to a geriatrician... I have since been on the phone to see if there is any information about waiting time... and now a referral has been faxed to a Parkinsons specialist. I have no idea still about how long it will take to get to see him. Waiting times in South Wales are becoming really very poor. This last couple of weeks he is now causing floods in the bathroom, either peeing on the mat/carpet (yes, unfortunately we have carpet!!!), and also now doesnt know how to turn the shower on, has to be nagged to have one in the first place, and I have to wash the important parts.

    Very little speech, memory pretty good, competence at little things rapidly worsening, co-operation rare, mobility rapidly worsening, poor sleep....

    Our family live in Dubai, I have no-one.... I am very frightened also about the financial situation, as far as I can tell, I would be allowed to continue to live in our house (still mortgaged), but would lose his pension income, and I wouldnt be able to move house at a later date because of the LA reclaiming costs when it is sold. There are zero savings (big debts - that's another story).

    I feel totally trapped. I am a disgustingly healthy/young 63 (so far!), my husband is 81.

    As for help, I don't feel that someone coming in to say wash him, would actually be a great deal of use... I don't want the house to be modifed.... (which I suppose is selfish of me)...

    I feel dreadful saying this, but I feel as if I am on the scrapheap myself.

    Practically speaking, what is going to happen?... i guess i keep going until I can no more, and at that point everything goes pearshaped.
     
  2. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    First of all, a very warm welcome from me to Talking Point, :) where you will find lots of other posters who will become your cyber friends, on this long, hard road. I'm sure others will be along soon to identify with your problems, and hopefully, if they can't offer advice or solutions, they'll offer comfort and understanding.

    From my own experience, we had about 5 years of moderate problems, which I now identify as the early stages, then for a couple of years things plateaued out, when John first used Aricept, and then we reached the middle stages, and stayed there for few years.

    And then I started to get help. It began with me contacting Social Services, which was completely alien to me, but they gave me details of a Day Club, and to begin with John attended twice a week, just for a couple of hours. As he reached the advanced stages, I began to seek as much help as I could. For example, I used Crossroads Care, and I could have 12 hours care, within a 4 week period, for £22.50, as this was heavily subsidised.

    I took this as 3 x one hour visits, each week, when someone would come and bath John, whilst I had a sleep. I rarely slept at night as John would b up and down like a fiddler's elbow. I increased the days and hours he was attending the Centres, and finally, last summer he went to a Care Home, initially, for respite, whilst I had an operation, but after 12 years of coping, I accepted he would stay there, and he died just before Christmas.

    My story is by no means the yardstick - some people have this horrid disease for a much shorter time, others may be older, or younger, what affects one may not affect another. But we're all only doing the best we can, and you have every right to feel the way you do. Talking Point has always been my salvation, and nobody judges or makes you feel small.

    I had such wonderful support through John's illness, and when he died, because here you will find people who truly understand what you are going through, and your fears for the future.

    I hope you get comfort from here the way so many of us had. I wish you well. xxx
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,495
    Female
    London
    No one can do caring on their own. I am quite a bit younger than my OH too and I couldn't do it without the day centre, sitting service, help from OT and telecare, the Alzheimer's Society clubs, the Carers Centre providing support, info and Relaxation Days, counselling sessions and a stress management course on the horizon, plus the lovely people on TP keeping me sane.

    So if you don't want to suffer carer breakdown and "end up on the scrap heap", get in touch with Adult Social Services and ask for assessments for both hubby and yourself. Tell them he's a vulnerable adult at risk and they have duty of care. Your right to a carers assessment is now enshrined in law. They can and should give you an idea what help is available and refer you to telecare and an Occupational Therapist. You might not want to have your house adapted but at least see what they could suggest. A few grab rails never go amiss or any aids getting in and out the bath. Help is out there, you just need to access it.

    Also get yourself referred to the Continence Service if incontinence is becoming a problem. They can provide you with pads.

    For your own benefit, get in touch with the Alzheimer's Society and the Carers Centre. They can provide both practical and emotional support and have coffee mornings where you can meet other carers. Singing for the Brain is also very popular!

    Also, make sure you get all the benefits and allowances you are entitled to. Is he getting Attendance Allowance and council tax exemption for severe mental impairment? Are you eligible for Carers Allowance? Has he made a will and granted you power of attorney? It's so important to sort the finances out as much as you can, so do it now.

    Good luck!
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,668
    Salford
    #4 Kevinl, Aug 23, 2015
    Last edited: Aug 23, 2015
    Hi Jikkie, welcome to TP
    I can totally identify with the bits above, I'm not quite "disgustingly" healthy but I'm not in bad shape (he said modestly), I too feel like I'm on the scrapheap, that life is on hold and you just go through the motions everyday waiting for something to happen.
    The financial side is difficult and I assume that you're looking at a him going into a care home? You need to get proper advice but it is possible you could downsize the house and use all the money from your current house, it'd not automatic that if you sell the house his share gets taken for care costs. It is possible to get debts written off on health grounds google it for more details and remember any debts in his name are nothing to do with you don't let anyone tell you differently, if you didn't sign anything you're not liable. Keep posting.
    K
    I've just found a useful link to money saving expert getting debts written off due to mental health issues, you have to download the pdf but if the debts are in his name you may be able to get them cancelled.

    http://www.moneysavingexpert.com/credit-cards/mental-health-guide
     
  5. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    Hi and welcome to TP, yes I'm younger than OH too, and he does have Parkinson's, it was for mater that I joined her but the help I have received for OH is a great help too.
     
  6. Tin

    Tin Registered User

    May 18, 2014
    4,829
    UK
    When I read first posts like yours I usually wait awhile to try and digest everything that's written, or wait for someone else to answer first. this time I am sitting here beautiful sunny Sunday afternoon, just waiting for roast to cook, so time on my hands, but still feeling that my life is ebbing away. I am 61 this month and I look after my mum who lives with me and she has been diagnosed with Vascular Dementia. I don't feel I'm on the scrap heap just yet. I too have financial problems, all mine not mum's and staying in work would not have solved any of these, but worrying and caring for my mum, just gave me added stress and so I found the courage to go and talk to Citizen's Advice and they did help. Are some of the debts your husband's? If they are, in some cases I have heard that because of Dementia some may/can be written off. I hope you are claiming all the benefits that you can again Citizen's Advice could help you.

    How you are feeling emotionally is completely understandable and people here do understand. Whether they say so in their threads or not, we carers are all experiencing the same emotions when it comes to dealing with this dreadful illness and trying all ways we can to stay sane. Sure you will find comfort and support here, so stay with us, this huge, ever growing 'virtual' family will help you.
     
  7. jikkie

    jikkie Registered User

    Aug 23, 2015
    64
    Thank you all for your kind comments. Unfortunately the crystallized debts are all in my name. And we cannot move house, we don't have enough equity, and the new tight rules mean that the lender would reduce our existing mortgage hugely, even if they would indeed lend. At least I have managed to postpone compulsory sell up date until I am 70. To be fair the mortgagor has been brilliant. It is possible (I have a Project in the works) that I may make myself some money during the next few years, and I quite definitely want to move house if I possibly can. Either before or after the inevitable. But who knows, I may get knocked down by a bus.... nothing in life is certain as they say.

    The LPA is all ready to be sent off for registration. Wills are done (homemade, very simple and nobody or nothing to contest etc.) There are no accounts or money that I cannot access myself.

    OH would hate daycare clubs etc.... I think possibly what I should look into is paid "sitting" care at some point. And yes I think the time has come to apply for attendance allowance, and the associated council tax relief. I believe the starting point for that is the GP?

    Really, from the state of his health point of view, I am beginning to seriously think that a lot of the problems are being caused by Parkinsons. If he could walk and move around easier etc he would have a much better quality of life, for quite a while I think. It's the physical things that are going downhill rapidly, more than the dementia side (I think). The challenge is, is getting him assessed/diagnosed/treated within a respectable timescale.
     
  8. Beate

    Beate Registered User

    May 21, 2014
    11,495
    Female
    London
    I don't know where you live but we get free Sitting Service provided by Age UK and paid for by Social Services.

    Age UK can also help you fill in the Attendance Allowance forms. Medical reports to support the claims are helpful, but if you don't have any, just write down everything he needs help with on the worst day, and how long he needs help with. I've been told 20 minutes per task is a good starting point.

    Once you get this approved, you can get the council tax form from the council and have it signed off by the GP. Date applicable from can be backdated to when problems started or were diagnosed.
     
  9. jikkie

    jikkie Registered User

    Aug 23, 2015
    64
    Thank you. We live in Cardiff.
     
  10. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,846
    Suffolk
    Good heavens. You should have applied for AA ages ago, go to ageuk or cab and they will do it for you, saves more hassle. They will also sort out community at reduction. Cab will probably tell you the best way to mitigate your debts.
    It's a pity you don't think your OH would go to day centres and the like. Go and talk to them and see what you think. As the disease progresses, attitude to outside care changes, though OH always complied if I stressed that he was doing it as a favour for me and my failures. Couldn't have lasted the last 5 years without it ( he had mixed dementia for about 10 years, and like you, he was much older than me).
    Get known to social services, Alzheimer's society and any other retaliated services in your area. You might not need them now, but you probably will, and it's good to know where to go.
     
  11. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,846
    Suffolk
    Crossed with Beate. The services in Wales aren't that good, I've heard. Just get stuck in and get yourself noticed.
    By the way, most people with Alzheimer's start with donepezil, and if seems to be good for a large proportion of those who take it. It only slows things down, though. I'm not sure turmeric and coconut oil actually do much, though they probably will do no harm.
    There are other drugs that can be used during later stages when other symptoms occur.
     
  12. jikkie

    jikkie Registered User

    Aug 23, 2015
    64
    Oh should I? oops, thought he had to be really bad first. CAB and I are not friends... their debt advice several years back amounted to "your husband will be rehoused as he is over 60, you will not, you will be on a park bench", which caused me to run all savings down to zero before I spoke to creditors.....including all the tax free part of my pension.

    OH doesn't want to do anything. He played rugby for Wales, the game was/is a massive interest, but now he doesn't want to go.. not very interested on tv either even. He does walk the dog on a pleasant day if nagged very hard.... will walk to the pharmacy each month to collect his prescriptions (which are an obsession), but that's about it.
     
  13. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,668
    Salford
    No need to involve the GP although the council may ask permission to contact them.
    I see you're in Cardiff so there's a link below to their website for the single person discount on-line claim form. You should get it backdated to the date of diagnosis everyone here (me included) got in backdated.
    In some ways being in a (relatively) big city like Cardiff means there's usually more things available in the way of help, the AZ society have an office on Ty-Gwyn Road, I would contact them and see what's available locally.
    K

    https://cmsinet.cardiff.gov.uk/mand...er?MF_DEVICE=HTML&MF_XML=SinglePersonDiscount
     
  14. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,768
    Merseyside
    Is there a rugby union benevolent fund that could help you?
    I know rugby league do.
     
  15. Beate

    Beate Registered User

    May 21, 2014
    11,495
    Female
    London
    She can only apply for the single person discount if she lives on her own. But she can get her husband exempted on the grounds of severe mental impairment which essentially leads to the same 25% discount.
     
  16. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,668
    Salford
    From the look of it you use the single person discount form in Cardiff. The link on their home page for claiming the discount on grounds of disability is the one I've posted, presumably somewhere in their you give the ground for claiming the discount, you have to fill the form in to progress through it so I don't know but I imagine that's how it works.
    K
     
  17. jikkie

    jikkie Registered User

    Aug 23, 2015
    64
    I thought you had to be getting Attendance Allowance first? wow...
     
  18. jikkie

    jikkie Registered User

    Aug 23, 2015
    64
    I just felt I had to do anything I possibly could.

    I don't think there is any chance of getting any further medical help, he will not be re-assessed. The nurse who visited us immediately post diagnosis, although very nice, basically said there was zero help until I couldnt cope any more... and no further assessment. Written off, in other words. I really don't know why they put so much emphasis and effort into diagnosis... but that's another debate entirely.
     
  19. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,668
    Salford
    I think the effort is to eliminate it being something else that's treatable. I have a friend who thought he was getting AZ, it turned out to be a brain tumour and while that's not a good thing it was successfully removed and he's currently sunning himself on a beach in Greece having made a full recovery.
    K
     
  20. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Hi Jikkie, welcome to TP. I'm not far from you in Pontypool. I'm 64 and my husband is 83. He has vascular dementia, needs 24/7 care. I still work full time from home and I get a lot of help from Torfaen to enable me to do this, but don't know if Cardiff have the same resources. I would definitely recommend getting in touch with Age Concern, they will come out and help with the Attendance Allowance forms, Council Tax reduction, if not already applied for, and let you know what services are available. Have you had a carers assessment? x


    Sent from my iPad using Talking Point
     

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