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. DancerKaz

    DancerKaz Registered User

    Jan 10, 2016
    13
    Oxfordshire
    Hello. I am new to the site so here to say hello and also ask if anyone has encountered this problem. I'm sure someone will have.

    My mum is in the early stages of mixed dementia and has recently come to live with me and my hubby. We felt she needed full time care as was constantly losing things and was very paranoid about someone breaking in and taking/hiding things. She had just misplaced them of course. She was becoming more and more distressed and as she lived over 100 miles away I offered her to live with us.

    The main problem I am having at the moment is not with my mum but with my husband. He has admitted he is jealous and doesn't like having to share me with my mum. I would add that he is also very supportive and very caring and kind to mum.

    It's little things like us not being able to go out and walk the dogs together anymore as mum can't cope with it. Her constantly being with us 24/7. I am trying to find out about respite but Mums very reluctant for anyone else to come and sit with her. We need to get some time alone together to keep our relationship going (we've only been together 7 years).

    Any advice would be appreciated.

    Thanks.
     
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Welcome!

    Hi, DancerKaz, and welcome to TP. I am sorry to hear about your mother. I've received lots of great advice, support, and information here on TP, both in current threads and reading through older ones, and hope you will find it helpful as well.


    As I'm outside the UK, I'm not very good with knowing how your systems work, so I hope someone else here will pop in with the relevant information, but have you got her registered with a local GP, had an assessment, gotten PoA, all of that good stuff? I know there's a process you need to follow so you can get carers and funding and all that sort of thing; I'm just not sure what this is.

    I do know that Age UK and the Alzheimer's Association and whatever you have locally, are all really good resources for you. In your area you might or might not have a day center/day care program, carers' support groups, a carers cafe, a singing for the brain group, dementia befrienders, programs offered through local community centers/groups/churches/charitable organisations/care homes. All of those are possible sources of help and information.

    There are plenty of people here who have a PWD (person with dementia) living with them. You might find your way over to Ann's thread (So Bizzare!), as she documents caring for her MIL who lives with them, and see if there's anything there that resonates for you, or not, as you wish.

    You may also find it helpful to find out more about dementia; there are some good fact sheets and resources online. It's a steep learning curve, but the more you understand, the more it may help you. Information is power (and about the only control any of us have over this terrible disease).

    While your mother may be understandably resistant to having people come in, or going to day care, the advice here is that it's best to do this as soon as possible, to establish the routine, as even if help isn't needed right away, it very well may be soon.

    You are absolutely right, you do need time to yourselves. Don't forget that you and your husband are important and have a right to your own lives. I have learnt this about dementia: it will eat as much time and energy as you throw at it. If you do not look after yourselves, you will not be able to look after your mum, and that won't help anybody.

    Also, don't forget that in addition to having carers/companionship come in to be with your mother, that you can also hire other kinds of help: cleaning, gardening, repairs, that sort of thing. Or you can send out the laundry, decide never to iron again, get the groceries delivered, whatever helps in your situation. You may, at some point, need to free up some of your time from domestic duties, for other things (sleep, caring for your mother, walking the dogs, whatever you like).

    Some people are able to convince the PWD that the paid carers are in need of the money, and therefore it's a kindness to "help them out" by letting them come to your house. Others say that the doctor ordered the help (it's always a good idea to shove the blame off on an absent authority figure, or anyone else, whenever possible), or that it's a free service, or whatever is enough to get a foot in the door. Often there is resistance upfront to the idea, but the PWD is able to get used to carers, so you also might just try not asking your mother, and, depending on her memory and level of delusions on any given day, I might not say anything in advance. I don't mean that to sound cold or uncaring, just practical and expedient.

    You have undertaken a massive and important job and I take my hat off to you. Not everyone can take in a family member with dementia, for a variety of reasons, and of course it's very hard work. Even with you and your husband living there, you are basically on call 24/7, 365 days a year. That is bound to take a toll, so don't underestimate how hard it can be. The great thing about TP is that there are lots of other people who have been where you are and so there is plenty of advice and support available here. And don't hesitate to tell your GP what is going on, and get help (and maybe a counseling referral) if you need it.

    I also previously lived a hundred miles from my mother and trying to manage things long-distance (without a diagnosis) was awful and near about killed me. I'm glad you have relief from the long distance worries, and the drives, and all the other things that are so difficult to do from far away.

    I do hope that being in a stable environment with family will help to calm your mother and reduce the distress, anxiety, and general upset.

    Don't hesitate to ask questions, seek advice, or just come here to vent. TP has helped me keep my sanity. I hope it's helpful for you as well.

    Best wishes to you all.
     
  3. theoh

    theoh Registered User

    Nov 11, 2015
    24
    Hi DancerKaz
    Poor you totally torn in half without any time or room for you. I so understand my OH is so dependent on me (although I have managed to get a wonderful day carer so I can continue my job which is needed financially) phoning constantly when I am at work and cannt go to the loo on my own in the evenings. our daughter a uni student is with us still for the holidays and I am torn in the middle - she resents her dad needing me so much and excluding her, she wants to spend time with me but cannt as dad wont let me go etc etc. she is still trying to get her head around her Daddy being an anxious confused old man and not the strong supporting loving dad she had before. Its a hard balance to find.

    the response from Amy in the US is amazing and so thoughtful and well put.

    everyone here understands your dilemma and the juggling which we all do in one way or another on a daily basis. This forum is great for venting, cyber hugs and just having people understand some of what you are going through.

    sending cyber hugs and support.
     
  4. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    612
    Female
    Hi DancerKaz. Welcome to TP. This could almost be me writing the same post!! My lovely Mum has been living with my fiancé and myself since April of last year and things are very similar for us. What has made matters worse however for us was that we went through an absolute horrendous Court Of Protection case to keep Mum here with us due to my awful sister and had to attend three court hearings (see previous posts) which was distressful beyond words. This together with our new life caring for Mum, my having to give up work to look after her, has caused such problems I am unsure if our relationship is going to survive now. My fiancé is really kind and good with Mum but like you, we cannot go out together as a couple anymore and walk the dogs each day (I have five plus other animals), go out for meals, go to the cinema, concerts etc and it's difficult. Having said that we do things all three of us and I also take Mum out a lot myself whilst she is still able to enjoy things but the lack of couple time is taking it's toll. It's even difficult to have any sort of private conversation isn't it too? Mum does not want to go to a day centre unless I go (kind of defeats the object lol) and would not accept anyone coming in and to be honest, it's not convenient to have people in to help out cos of the dogs and I don't particularly want strangers in doing anything anyway! I can cope with Mum, but I guess I'm just finding it hard juggling a relationship too. We've only been together four years. I don't know how others manage? I'm very independent and lived alone for ten years before meeting my fiancé but don't want to lose him but if I have to choose it would have to be my Mum. It's all very difficult so I just plod on hoping for the best. Good luck and best wishes to you.
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    5,566
    Female
    Scotland
    This is a testing time for you all and how you deal with it depends on how much you want to protect your couple relationship. Fifteen years ago my husband took on responsibility for his handicapped sister (profoundly deaf, cannot speak, sign etc). She was and is very fit and active but loved being the centre of his attention. I arranged sheltered housing for her but husband was there at least four days a week, took her out on Friday nights, took her on holiday etc.

    Rather than being jealous I got so sick of the whole thing that I made a new life for me. I could see that she was becoming too dependent on him and he was encouraging it and would not listen to reason. He could not look to the future.

    My new life consisted of going to concerts, theatre, weekend trips on my own or with friends or daughters and I liked it. I loved holidays with them too.

    A chasm developed between us only held together by what had been a very happy marriage and partnership. Of course with hindsight I can see that John was building up to Alzheimer's so couldn't see what was happening. Here we are further down the road and I am his carer and by default responsible for his sister who in many ways manages without him.

    This is a time for you to insist on what is right and to tell Mum she must go to day centre and give you space or you may not be able to continue.
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Hi there

    How tricky this is for you.

    I would ask for a Carers Assessment from Social Services - that will give you a break and I agree that a day centre is a great option and really gives you your life back and time to fit in all those things that you did together and stop the resentment and exhaustion building up.

    The key for me was to keep the levels of negative feelings as low as possible all the time so I did that by grabbing anything that gave me a bit more space for me and we managed for 4 years

    You could also think about having a week where either she goes to respite or a live in carer comes in so that you can both go away and really chill - or even a long weekend or mid-week break . If you did this every 4 months or so it would be something to really look forward to.

    A big commitment but fantastic for Mum.

    keep posting and take care of yourself x
     
  7. DancerKaz

    DancerKaz Registered User

    Jan 10, 2016
    13
    Oxfordshire
    Hi Amy,

    Thank you so much for your reply and all the information contained in it.

    Lots of things are already in place - my husband had an auntie with Alzheimers that we lost just over a year ago so were well aware of signs, symptoms and some of the problems we could encounter.

    I obtained POA 18 months ago and that has been invaluable.

    I have taken Mum along to a Memory/dementia café which she enjoys going to and am starting attending a 2nd one tomorrow. Fingers crossed she will like that one too!

    She likes to meet ppl her own age (well over 70), she is 93. She doesn't communicate a lot with them when we do go to these places but still enjoys listening to what they have to say and playing games relating to things in the past.

    I am going to look at day care for one day a week at least although it is the weekends we have most problems with. OH works nights so sleeps during the day and isn't here in the evenings so that isn't a problem.

    I will see if I can find anyone who does respite at the weekends.

    Thanks again for your advice and I will certainly use TP more - had some lovely responses from ppl and its great to know you are not alone.
     
  8. DancerKaz

    DancerKaz Registered User

    Jan 10, 2016
    13
    Oxfordshire
    Thank you so much for your reply and I am sorry to hear of your situation too. It is so difficult balancing relationships while keeping your PWD content and safe isn't it?

    We are lucky as Mum isn't that demanding to be honest but cant be left alone as making a cup of tea is dangerous as is walking upstairs to the loo.

    I have had to give up my job - well I am on a sabbatical at present but cant see me returning. We are moving house in 6-8 weeks time so that will bring its own challenges!!!

    Sending cyber hugs back to you and thank you again.
     
  9. DancerKaz

    DancerKaz Registered User

    Jan 10, 2016
    13
    Oxfordshire
    Hello tryingmybest and thank you so much for your reply. Gosh - we are in a very similar situation aren't we. I know what you mean re private conversations etc. We tend to have these at bed time or disappear in another room with the tv on so we cant be heard. Sounds sneaky but you have to do what you can eh!!

    Like you we take Mum out with us and I take her out during the day as much as possible although she can really only cope with every other day at present. It was OHs birthday last week and we went for a family meal and she came too and it was no problem. Its silly little things like the dog walking, visiting the grandchildren without her or taking them out. The time I really need respite is at a weekend but not sure how much is available.

    Anyway I will look into it and on advice I am going to look into Daycare, even tho she doesn't want to go. Maybe for half a day a week to start with - just to give us a bit of space. From what I have read on here it seems that most PWD enjoy it in the end after varying amounts of time.

    Anyway I will let you know how it goes and sending cyber hugs your way.
     
  10. DancerKaz

    DancerKaz Registered User

    Jan 10, 2016
    13
    Oxfordshire
    Hi Marionq and thank you for your reply. So many lovely ppl on here with great advice. It is quite overwhelming!

    I will not sacrifice my relationship for looking after my Mum - my hubby comes first. But I would not relish a day where I had to make that choice as obviously love my mum to bits.

    As I said in a previous reply I am going to look more into daycare and insist if necessary and get my GPs support to get her along there.

    I will let you know how it goes.

    Thanks again.
     
  11. DancerKaz

    DancerKaz Registered User

    Jan 10, 2016
    13
    Oxfordshire
    Hi fizzie and thanks for your reply.

    I haven't contacted Social Services at all but have been recommended to do so. I had a visit from a support worker from the Alzheimers Society but that particular worker has now left and Im not sure who has taken over. Again need to find this out.

    I find it hard contacting these ppl as Mum is always in the room and listening and at times doesn't even admit she has any problems/dementia at all. This then causes an argument.

    The short breaks etc sound great and is something we are working on. We have a family member who has offered to do overnight once we have moved house (in 6-8 weeks time)! and have got mum settled into her new environment.

    We do want to go away in the summer for 2 weeks - do you think this would be too long so early on in our caring for her?

    She has said she wants to stay with her brother if we go away but he is not well enough himself to look after her. She says she wont go in a home! She may not have a choice, sadly.

    I think sometimes you have to be cruel to be kind. I don't want us resenting her for not being able to have some "us" time.

    Gosh 4 years is a long time - you did so well and thank you for the positive advice.
     
  12. DancerKaz

    DancerKaz Registered User

    Jan 10, 2016
    13
    Oxfordshire
    Bless you kassy - you are obviously a much stronger character than me!
     
  13. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I can't answer this directly as I didn't go away - but that was a trust issue for me - I didn't trust anyone could look after her and was worried she would deteriorate and looking back I would NOT recommend my approach lol

    If you could afford to have a live in carer whilst you were away then that would probably be your very best option - worth thinking about and sometimes not as expensive as one might think
     
  14. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    I would not see it in those terms. Make the decisions that are right for you and do not feel that you and your OH are less important or that you are 'weaker' because you don't want to sacrifice everything else in your life for your mother. I would absolutely hate to think that my lovely daughter did anything to jeopardise her marriage or her own children for me.

    It is in the nature of things that parents eventually die and your future matters just as much as your mum's.
     
  15. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    511
    That doesn't sound right to me - you need to be able to make a phonecall in private sometimes. How about getting a cordless phone, or using your mobile, and locking yourself in a different room to call. I remember when my children were little, I had to get a cordless phone so that I could run into a different room to talk if I needed to, and at least I'd have a few minutes peace until they could toddle in to find me.
     
  16. DancerKaz

    DancerKaz Registered User

    Jan 10, 2016
    13
    Oxfordshire
    Yes I agree with you there. My mum is 93 so I have a lot more future years ahead with my OH than with my mum. I certainly wont give up my relationship for her, just want OH to accept the way things are. I think he is causing me as much stress as she is at the moment.
     
  17. DancerKaz

    DancerKaz Registered User

    Jan 10, 2016
    13
    Oxfordshire
    If I need to talk privately I do disappear into another room but cannot trust Mum not to fiddle about with things while I am gone - especially the kettle! I try and work it so I make a cup of tea and then go - usually OK for a short time but Im always on edge.

    Maybe a lot is because it is early days and I am still getting used to routines etc with her and when I can leave her reading the paper etc. She sometimes sits for over an hour doing this.

    It is all a learning curve constantly eh!

    Thanks for the advice.
     
  18. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    #18 Pickles53, Jan 12, 2016
    Last edited: Jan 12, 2016
    That's true, but one of the saddest things about dementia is that adults lose the ability to appreciate anyone else's needs, as so many posts on TP describe, and will always expect to take priority over their relatives' lives and those of their partners and children. This isn't their fault, but the carers don't have to go along with it unless they really want to. Carers should not feel guilty about putting someone else first sometimes (including themselves) if that's the right thing for their families.
     

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