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.

  1. linda.h

    linda.h Registered User

    Jan 24, 2005
    8
    dukinfield
    hi every one
    even though this is my first posting i have been reading your postings for a while and my heart goes out to you all. My husband Norman was diagnosed with Lewey Body Dementia 4 years ago. It took over a year of many hospital visits and brain scans and tests before he was offically diagnoes and he is now 62. most of the time i just get on with what needs doing, Norman needs help with everything he does now. His CPN nurses have said they will not be monitoring Norman any more as there is nothing more they can do for him. He wont go to day care or respite or let any one else but me tend to his personal needs. But I am Feeling very low because i can not cope with all the aggression i.e. throwing things and verble abuse that constantly comes my way now. I know it is part of his illness but he leaves me shaking and emotionally drained.And i seemed not only to be losing him (who I still love dearly most of the time) but i am losing who i used to be as well. Do other people go through this as well. There seems to be so little help out there.
    I think you are all heroes who deal with this awfull illness day in day out.
    take care linda x
     
  2. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Linda,

    I'm sorry to hear of your situation, it's not surprising you are feeling low. It sounds as if you do not have much support. Did the CPN's suggest anything? Would your husband be persuaded to go to a 'club' instead of calling it 'day care'? We didn't think Dad would go at first but the people who came and collected him were so nice and, of course, Dad welcomed them like long lost friends after he'd been abusive to my Mum!

    I know my Mum had a little 'cubby hole', as she called it, when Dad's aggression was really out of control she would go and hide. Not a solution, I know, but he couldn't rant on at her when she wasn't there!

    Take care,
     
  3. HELEN

    HELEN Registered User

    Jul 16, 2004
    36
    wales
    Dear linda,

    I cared for my mum full time until she was taken into EMI hospital recently. Originally for respite, but it has now been decided she will be staying in there for good. She won't be coming home & i'm still struggling to come to terms with that. Like most carers I found it hard caring for her 24/7 but what i found the hardest was the aggression & verbal abuse. Without that i think i could have carried on for longer. Its so hard , even though you tell yourself it's the illness not them speaking. Its that much harder if you haven't had enough sleep. You find yourself feeling resentful towards them & then afterwards when their more loving , SO guilty about the thoughts you've had. But we are only human. I used to shake afterwards too. On a lighter note , i know there are other TP members who like myself would go to the bottom of the garden & have a scream to let out the stress . So you may have to join the screaming gardeners brigade . You can get some funny looks from the neigbours but who cares. I was lucky that mum's next door neighbour was also looking after her mother-in-law with AD so i just used to get a knowing smile. I'd trim hedges or sweep up leaves as an excuse for being out there & help release the stress. So the worse mum got the better the garden looked. They say every cloud has a silver lining. Seriously though i was much luckier than you because there were a few others who mum would let take her to the toilet & change her though not always willingly,but she would only let me bathe her in the end .I did have a carer who came two nights a week. Mum was furious at first but slowly started to accept the situation. For a little while things weren't too bad , until mums health deteriorated further. While she might be furious at the time she would not remember later .Mum would object strongly about going to day centre but when she was there she was ok. Or she would look forward to going & then not enjoy it. Either way, once she got home, by the time she'd had her tea she'd forgotten she'd been. Have you given a day centre a try , what happened ? I know it's really hard trying to make them do something they don't want to do but there are 2 lives to be considered , yours & Norman's .You have a right to some time for you. I felt terrible but i knew i could not continue to look after her unless i had that time off. often to catch up on sleep. So mum had to go whether she liked it or not, it often took a great deal of persuasion but we managed it somehow. It also helped to pave the way with further care (respite, long term). What would happen to Norman if you were taken ill , he would have to accept others caring for him. I really don't mean to sounds harsh but its true. At first in hospital they had terrible trouble trying to get mum to accept them bathing her etc but slowly she has accepted it . She still has her moments though. The thought of her being upset really upset me but it gets easier. Sometimes you just have to be brave put your coat on, trust the staff & walk away. Its really hard but you have to. Thats why i suggested a day centre as i found it easier not having to witness the confrontations.
    If you feel this is a step too far at the moment then perhaps you could give us some more details regarding what upsets him & someone on this site may have some tips for making it easier. When i was really struggling with mum the doctor prescribed lorazepam & if i gave her a mild dose it would help take the edge of her aggression & help her relax.

    Hope i won't upset you with anything i've said here . I don't mean to preach, i'm no expert , you should read some of my earlier posts , & i only speak from my own experience .You must decide whats best for you & Norman ,your the best judge of your own situation .keep posting if you need support. Thinking of you both & wishing you easier days.

    Take care

    Helen
     
  4. linda.h

    linda.h Registered User

    Jan 24, 2005
    8
    dukinfield
    dealing with aggression

    Thank you so much Hazel & helen for your words of comfort and advice of which i am very greatful for. In the area where i live there isn't a day care for younger poeple with dementia. The nearest one Have siad that Norman can not attend there because we are not in there catchment area.So he would have to go to a day care for older people and social services have told me that if Norman refuses to go that they can not put him on there waitig list.
    The list of thing that make him angery would indeed be a long one, he thinks that i am steeling from him and if the grandchildren come he thinks they are steeling from him. He wants my full attention at all times and gets very aggressive if i wont stop from what i am doing straight away.He also thinks i hide thing from him if he cant find some thing. And that i sped most of my time plotting agains him , and the list seems endless. Because he has Lewy Body Dementia the doctor have said that they have to be care full as to which medication they give him. He is on diazapan at the moment.
    We do still have some nice times but they are getting fewer. My family have told me that nothing more can be done to save Norman and they think the time has come for me to let him go into a nursing home. But it will feel to me like a betrayal. Thanks for caring sorry about spelling, he has nodded of for awhile so i am trying to get things done before he wakes. take care all of you. linda x
     
  5. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Linda,

    Not having a Day Centre in your area makes it difficult, I didn't realise there are catchment areas for these things, so annoying when everyone needs access to them. I wonder if you have spoken to your doctor to see if s/he has any suggestions for some respite?

    Dad has also accused Mum of stealing and plotting, for instance he'd hide his shaving gear and then forget where it was and accuse Mum of taking it. Of course, she used to have to inconspicuously watch where he was putting it to remember for him and so she already felt like a spy! He is often very supicious of other people. It's all part of this horrible illness but it still hurt Mum to think that Dad would think about her in that way.

    I'm sure your family are thinking of your welfare when they mention a nursing home. I understand about the betrayal because we all felt this (Mum especially) but she was making herself ill with all the stress, and the aggression was the final straw.

    In our experience, even when we were still opposed to the idea, the fact that we visited a Home before it all reached crisis point, and spoke to staff - asking our hundred and one questions - turned out for the best. I managed to get through the visit by pretending that Dad would never have to go there.

    Dad's been settled in that home for eight months now, the staff are lovely and visits can sometimes be very special. Still, like Helen, I don't mean to upset you by telling you this, I just hope to show it needn't be all bad if that eventually happens.

    Meantime, I hope you get some support you deserve soon, all the best,
     
  6. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Linda,

    Welcome to Talking Point. It’s a great place to get information, advice and support.

    It certainly sounds like you have a lot to cope with at the moment, and you’ve been coping with it for quite a while. When you’re feeling so overwhelmed it’s hard to think clearly about the future, and certainly the advice of your family and friends (those who really know you and your husband and have your best interests at heart) can help to point the way.

    It seems as if you either need to get more support into your current set-up or else at least investigate the care home options. Since the day care option doesn’t appear available at the moment, have you considered getting some care assistants to come to your home to give you a bit of relief? My mother-in-law is my father-in-law’s main carer and she has just accepted having someone in two afternoons a week to give her some extra help (mostly she uses it as a time to run errands). She was sure that he would not accept someone else in the house, but so far he has accepted it (perhaps better than she has). Does your husband have a social worker? If so, he or she should be able to help put a care plan in place for you.

    I agree with Hazel about going to have a look at care homes, that is exactly where we are in the process. It can be difficult at first (primarily because you are faced with the progressive nature of dementia) but it can also be reassuring in an odd sort of way – that there are places where people are valued and treated with respect.

    Also from a very practical point of view, there are only so many care homes that are registered to take patients with dementia. Some homes are better than others (we’ve looked at 7 so far and would only consider 3 or 4 as being very good), and many of the good ones can have long waiting lists – our first choice has 15 people on their waiting list. Geographical location can also be quite important – only 2 of the 7 homes we’ve looked at are in my in-law’s town, the others are 30 minutes car drive away (my mother-in-law does not drive).

    The best place to start learning about care homes in your area is the Commission for Social Care Inspection’s web site. You can search their database for care homes that take people with dementia and search based on your post code. You can then read their inspection reports on line: http://www.csci.org.uk/registeredservicesdirectory/RSSearchCategories.asp?Action=SearchCats&Type=CRH

    Investigating you and your husband's options will not be a betrayal. It is a sensible, thoughtful process of planning for the future, even if it is never necessary to put those plans into action.

    Take care,

    Sandy
     
  7. linda.h

    linda.h Registered User

    Jan 24, 2005
    8
    dukinfield
    Thanks so much for your much needed advice. We have for some reason had an univentfull and by our standards a peacefull week. It seems as though unlikley as it must be as though he knew that i was at the end of my tether. But i do feel better and i agree that i should start to look for a good nursing home and as you have said i dont need to make any decisions now but it will give me some idea of what to expect. I am sorry i have not responded sooner but my computer has been acting up. Take care everone and thankyou for caring you all feel like freinds.xx
     

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