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. ellie1052

    ellie1052 Registered User

    Sep 25, 2006
    4
    lancashire
    Hi, I am totaly new to this so bare with me,
    Mother (aged 82 ) living at home with husband (85) of 14 yr husband not in good health, mother now with dementia.
    when I take mother out for the day she is fine but always wants to go back to her home this also hapens at the day centre she attends.
    Husband wants her to go to a home ,yet we ( her family feel that her own home would be more beneficial to her condition, Mother can bathe / wash / dress,by herself but with supervision. social services provide supervision for these areas but in between these times he says he cannot cope.
    Has anybody else had similar experiences

    Ta Ellie:confused:
     
  2. zak

    zak Registered User

    Sep 29, 2006
    9
    dad is similar

    hi im new to this as well. dad lives alone dosent need a lot of care at the moment just company.. i find it hard to deal with unlike my other family which makes me feel like a failure.. we want him at home as long as poss but sometimes we all cant be there when asked.. i love dad and want to be there but feel very down and cant face going on some days..it causes a lot of bitterness sometimes.. dad goes to a day centre too which he enjoys but he yet dosent know why he is there. he thinks he works there. wont go into a lot of detail yet but does anyone else feel down and sad when they visit there loved one.
     
  3. Dolly Pond

    Dolly Pond Registered User

    Mar 17, 2006
    9
    Buckinghamshire
    Hi Ellie

    My experience isn't quite the same as yours but, I might be of help?

    My dad was at home and clearly unwell but, he could like your mother wash, dress etc. He is now in nursing care and in the 15 months he has been in care is now considered 'high dependency'. You can't help feeling that his condition has been accelerated by the fact everything is done for him and that he is in unfamiliar surroundings.

    When he went into the first home in June last year I was totally in denial, I always felt he should be at home with my mum. At times I felt that my mother had allowed him to go because, she had had enough of looking after him. This was of course, not the case and completely unfair of me.

    It is only now I really understand what she went through, she had protected her children by not sharing what it was really like for her.

    You have to weigh up where your mother will get the best care, not what feels the most difficult to you. There is no easy answer and I don't imagine this post will help you make a defined choice, but do hope it points out the pros and cons. I do now appreciate how physically and mentally draining it is for careers and the role goes on for her.
     
  4. Helena

    Helena Registered User

    May 24, 2006
    715
    Ellie

    just 2 hours with my 90 yr old Mother who has VD and insists o living alone is totally physically and emotionally exhausting

    for anyone living day in day out with a spouse or parent with AD/VD it must be souldestroying

    I honestly think when the disease is fairly advanced in that they need help they need to be in a care home

    However I also think that many of the sufferers would be truly horrified to see what they have become as a result of AD/VD and would be campaigning very loud indeed for a total change of attitude and the law that would honour their wishes in the face of devastating or terminal diseases
     
  5. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Hi Ellie

    Two years ago my parents were both in failing health. My dad wanted my mum to go into a home and my mum wanted my dad to go into a home - neither of them thought that they themselves needed to go into a home! My dad would say that he 'couldn't look after' her any more but he actually did very little for her, partly because he was too incapacitated himself! My mum needed to take medication 5 times a day and wasn't very good at remembering to take them. She also physically had trouble taking the meds because she has Parkinsons and 'there's many a slip 'twixt cup and lip'! My father at one time did remind her to take her meds but then this also got beyond him and we frequently either found tablets on the floor or still in the box and not taken at all. The 'carers' who came in were a bit hit and miss and we felt that they were doing what it suited them to do and also judging the situation and being critical of our ability to take control of it - I can't be sure of that last bit and it may just be me being paranoid!

    It got to the situation where my sister and I myself each had to go to our parents house at least twice a day. As I work full time and my teenage son had not long been diagnosed with diabetes it was a very stressful time. Social Services were also pushing for my mum to go into a home but my sister and I were very reluctant for it to happen. My mum did go to a day centre once a week which she enjoyed and also had the odd week in respite which she hated! That made us even more reluctant to put her in a home as it also meant she would no longer be able to go to the day centre.

    Our hand was eventually forced when my dad died very suddenly at home. My mum had to go into emergency respite care and then we were under extreme pressure from the Social Worker to find a permanent place in a home for my mum (the respite place was council run and under threat of closure so Social Services wouldn't let her stay there long term. The home did close several months later) We were having to look for homes before my dad had even been buried so it wasn't the best of times to be making decisions!

    I do know from our experience that it is very difficult to keep someone in their own home if their spouse does not want the same! What I would say is that you could maybe think about looking at homes locally so you have some idea of what is out there. You could even put her name on a waiting list as you are obviously not obliged to take up a place if it becomes available. You may also want to investigate what the options for funding are ie whether your mother would be self funded or paid for by the Local Authority. None of this means that your mum will definitely end up in a home but at least if it comes to that you know the procedures and won't be so bamboozled by it all.

    I hope this is of some help and feel free to ask me anything you want. You can also pm me if you'd prefer.
     
  6. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    I certainly often feel that way when I visit my mum and I am sure lots of others do. It would almost be strange to not feel that way!

    My mum's communication skills are now very poor and it can be really hard work trying to have any kind of conversation with her. This is very frustrating for me and I am sure it is the same for her. I don't feel that I go to see her as often as I should and sometimes I have to almost drag myself there. Sometimes I am pleasantly surprised and we have a really nice visit and sometimes it it just b****y awful. Most of the time it is somwhere inbetween.
     
  7. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    This is one of the reasons I was reluctant for my mum to go into a home. If you do something for my mum she will let you do it and it makes her lazy. I am sure that sounds very harsh and is not true for everyone but is certainly true for her. For instance when she was in better health than she now is I was with her for several emergency hospital admissions whichl luckily only turned out ot be minor problems. When they were getting ready to discharge her the nurses would dress her and she would let them when she had been perfectly capable of doing it herself. I felt that if she went into the home she would become more dependent more quickly than she would otherwise. I was told that a good home would encourage residents to continue to do as much for themselves as possible but I am not sure it happens in practice. If you have 20 patients to dress/feed/toilet then you are not going to have the time to stand around and let them muddle on when it is quicker to do it yourself. This may not be true in every case but I am sure it is not uncommon. Obviously if someone goes into a home and then their skills deteriorate then it is impossible to know how they would have been had they stayed in their own home.
     
  8. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Ellie,
    Welcome to TP.
    I think if your mother's husband does not want, or feel able to cope with it any longer, then he needs to be listened to. You have said that his own health is not good, and at 85, maybe he is just very tired. It is my opinion that you cannot ask someone else to do, what you are not prepared or able to do yourself - can you, the family, be there more during the 'inbetween times' - because the 'in between times' are in fact the majority of the time,to give mum's husband more support?
    If he does not feel able to cope now, it is certainly not going to get any better - I think the kindest thing for both of them would be to look for a good home nearby, where all the family can have easy access, and mum will receive good care.
    Best wishes,
    Helen
     
  9. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Zak,
    Dementia is tough to cope with, and we all react differently. This is still your dad though, and he is at a time in his life when he really needs you. You say that the rest of the family don't find it difficult to deal with - I bet they do at times- maybe they can just disguise it better. Don't waste time and energy feeling a failure; when it gets you down, sit down and have a good cry (if that's how it gets you) , but then you have to pick yourself up and do what you can. Maybe there are things you could do to support other family members as they support your dad. I think what is important for them is that they feel that you are involved in the caring as well.
    Best wishes,
    Helen
     
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I think we get a combination of things over time, at least I do.

    Down, yes, because Jan's life has been ruined so.

    Sad, yes, both for her and for me and for us, because of that.

    But also, immensely proud of her for the way she bears it - yes, I know she really doesn't have any choice, but you have to see her to understand. She is absolutely inspirational, especially since, yesterday [Saturday], she suffered her latest fit. On Friday I had a one of the sad visits because she was trying so hard, yet was unable to move off her back, and i could do nothing to help her. I wondered at the time whether something was about to happen, like a fit.

    But today after resting, she was up on her knees for most of the visit, and as far as she can be now, very responsive.

    I know from past experience that, after a fit, people often perk up as their system tries to stabilise itself, and that a few days on, they drop lower than before. But hey, let's enjoy the bright patches that appear. We can worry about the next step down when they happen.

    Finally a story.

    Of late, Jan has been enjoying small pieces of KitKat [for our US readers, that is a chocolate biscuit bar, not cat food.... ;) ], but these days, she salivates a lot as she eats and as I have to hold her upright, she tends to leave my shirt looking like I was standing behind the fan when the s**t hit it...

    So I wasn't going to give her any KitKat today as she seemed happy enough without.

    However, in the next room, a lounge, a family was visiting S**, a grandfather who spends his life reading books about farm tractors these days. I could hear them exchanging greetings, and then one said "We've brought chocolates, would you like some?" to those assembled around him.

    As they said this, I noticed Jan's mouth open and her tongue came out - normally a sign that she wants more food - and especially chocolate.

    I was amazed that 1) she could hear sounds from next door 2) that she understood exactly what was being said.

    We shared a KitKat after that!
     
  11. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    15,982
    Toronto, Canada
    Brucie,
    How lovely about the KitKat!! I hope the two of you will enjoy many more together. On a practical note, find a big bib for yourself & perhaps you won't look like you were standing behind the ventilator when the manure hit it.
    Joanne
     
  12. ellie1052

    ellie1052 Registered User

    Sep 25, 2006
    4
    lancashire
    Thank you for your comments I would like to add another angle to my original posting and that is that I lived at mothers for some weeks while her husband was in hospital and had no problems with her in fact she was no where near as bad as I had been led to believe and the offer to take over as carer has been denied (social services are in agreement that mother is no way near ready for a home)
     
  13. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    [QUOTE=Amy]Hiya Ellie,
    Welcome to TP.
    I think if your mother's husband does not want, or feel able to cope with it any longer, then he needs to be listened to. You have said that his own health is not good, and at 85, maybe he is just very tired. It is my opinion that you cannot ask someone else to do, what you are not prepared or able to do yourself - can you, the family, be there more during the 'inbetween times' - because the 'in between times' are in fact the majority of the time,to give mum's husband more support?
    If he does not feel able to cope now, it is certainly not going to get any better - I think the kindest thing for both of them would be to look for a good home nearby, where all the family can have easy access, and mum will receive good care.
    Best wishes,
    Helen[/QUOTE]


    Hear! Hear!
    I totally agree with Helen. As sad as it is to see our loved ones go into care, it is MUCH worse if they are not able to be properly cared for at home. I would think your mother's husband would probably want to keep her at home if he could, so he is probably being realistic if he says he cannot do it any longer. As others have said, just being with someone with AD for longish periods is exhausting, let alone looking after them and a home as well.
    I urge you to support your step father and make sure he does not feel as if he is "at fault" for this decision. We all hated letting M&D go to a home but there really was no alternative. Find the best place as near as possible and visit often. Good luck! Nell
     
  14. perfectpatience

    perfectpatience Registered User

    Oct 3, 2006
    64
    Essex
    Care home or not

    Two years ago my mum had a fall whilst out walking with her sister. She broke her right arm and was taken to hospital (the last time she ever went into hospital was when she had my younger brother who is now forty) My mum stayed in hospital for 10 weeks and in that time although her arm completely healed she somehow overnight got 'dementia'. This was such a shock to me as she was fine one minute it seems then had this terrible disease the next. (Mum is only 77 years of age now) Anyway I totally would not accept this awful word and decided to discharge my mum from hospital and look after her at home. This worked great at first...she seemed to improve so much. But after a while I felt emotionally and physically drained...as she kept getting urine infections and even though she was eating well....she would never drink enough and had to go into hospital twice with dehydration. In January this year I had a chance to move with my partner to the country...and also I put my mum in a care home that was near. It is a lovely place....but my mum has deterioriated so much in there. Her weight has dropped so now she is about 5 half stone. I feel so guilty. All the carers and medical staff tell me this is the progression of the illness....but I cant help wondering if I didnt have sent her there...she might still be as she was even a year ago...which was so much better than she is now. I wonder if anyone else could help shed some light on this awful situation....or ever been in the same position as me. Any advice would be greatly appreciated. PP x
     
  15. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Nursing home

    Hi, Yes I have been in the same place and time. It must be near 5 years ago my wife fell and broke her arm. She walked into hospital. I won't go into details about the staffs' lack of knowledge on Alzheimer's. Unknown to me they gave her Matazapine. Four weeks later she came out in a wheelchair! She had six moves from the time of her fall to me placing her in a NH. Yes she went down to 5 stone and devoleped bed sores. I was told it was part of the illness. The pain was too much for me. So I removed her, that was three and a half years ago. So upset and angry was I with everyone I decided to care for her myself. Got rid of all medicne, now she is 8 and a half stone, unable to move or talk but healthy and happy. I don't recommend anyone should take the same course but it can be done. Sure it's scary at first but some people might surprise themselves of what they may be capable of. We have just had our 51st wedding ann and on Sat & Sun she will be 72 and I'll be 75yrs old. Good luck and God bless. Padraig
     
  16. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    Perfectpatience

    This may be totally irrelevant but have you ever wondered why she fell in the first place? I ask, because it occurs to me that a stroke can produce dementia sysmptoms overnight. Alternatively, simply the stress and pain of an injury that is serious enough to need hospitalization could bring on a stroke, or a series of mini-strokes.

    Jennifer
     
  17. perfectpatience

    perfectpatience Registered User

    Oct 3, 2006
    64
    Essex
    Carehome or not

    Yes Jenifer I have thought of that and had it mentioned to me several times. If I think back my mum might even have had a urine infection before she fell...as we were told she had one when she got to the hospital with her broken arm. Its just that this all came about really sudden for me...as I didnt know of anyone having dementia before (or in the family) and its not until now how I realise it is really a common thing. As I have two brothers also (and no sisters) I felt all this fell on my shoulders...being that my brothers seem to have not been able to deal with it. My mum has gone from a wonderful caring sensitive and attractive woman...to this unrecogniseable shadow of her former self. I know how she would feel if she could see herself (her teeth have now been totally lost) and she just seems to stare into space most of the time. She does know who Iam...but doesnt seem pleased or show any emotion when I visit. To top it all her sister (who she see every day) and was like my other mother and rock passed away a few months ago with bowel cancer (another quick and unexpected shock) and I feel I have lost two of the closest people in the world at once. I guess people might say this is all part of 'life'....and I know this is true. Its just I feel so guilty putting my mum in the care home....she might have stayed a bit better longer....even though now I would never be able to cope with her as she is now....but part of me is saying I might...and she could even improve and get a little better....she did it once....why not now? I feel alot better just getting this out by writing this.....it really does help.....kind regards to everyone...PP xx
     
  18. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    PP
    Talking (or rather typing) about it does help. I never been a great believer in a "trouble shared is a trouble halved" because it seems to me that sometimes, knowing that other people have the same problems just makes the whole thing more depressing, but there's no doubt that this sort of venue is very helpful. You may not be able to make any sense of the whole thing, or solve the problem, but it does help to keep the guilt monster at bay.

    What if? Well there's the rub. Maybe she would be better than she is now if you'd kept her at home, but maybe something else would have happened (e.g. walked out into the road and got hit by a bus). Something I do know, you probably wouldn't be better than YOU are now. You might not feel so guilty (although, even people who care 24/7 talk about guilt, so no promises) but you'd probably be exhausted, stressed and desperate. At least, I would be, but I know my own failings.

    My mother is now a year post stroke, and she lives in a very sheltered housing facility attached to a nursing home. I don't even live in the same country. I visit 4 times a year, but after a few days I'm ready to climb the walls. I'm full of admiration for those who do it (care 24/7) but I couldn't. In fact, my dirtly little secret is - I'm relieved I couldn't get health insurance for her so she could live with me (I'm is the USA, mummy is in the UK). When I visit, she herself says "you do have another life away from me, don't you? I wouldn't want you to be doing this all the time" so I don't feel TOO guilty, but as an only child, it's down to me. It's not what I wanted for her (or me) but it is what it is.

    Jennifer
    (Who's probably given you more than you wanted to know - sorry)
     
  19. perfectpatience

    perfectpatience Registered User

    Oct 3, 2006
    64
    Essex
    Thanks Jenniferpa for your comments. I do appreciate hearing other peoples views...if only that other people are going through same or similar it does help to know how they are coping...and sometimes helps if I look at a situation in another light ...this also helps me. My keeping asking myself "What if?" is also what you said true. What if she was at home and she set the flat alight (she was always leaving the gas on...or trying to cook for herself) Hundreds of reasons I could give I suppose where she could have taken a turn for the worse. Of course I still will never know if she might be alot different...she has lost so much weight....and one thing I will never understand is how a perfect set of false teeth can go missing...never to be found is beyond me. She is only ever in two rooms in the care home....so perhaps they actually got flushed down the loo...but she looks so old without her teeth. (Mum never even told me she had false teeth ..ever..) so I guess she had a thing about false teeth!! Iam going to visit my mum in the home soon....I like to make sure she has eaten and gets settled in bed for the evening. Thanks again for your reply. Good luck with everything Jenniferpa....and best wishes to your mom. PP xx
     
  20. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    My mother's false teeth went missing in hospital - one moment there the next gone. I actually think they may have been taken by another patient. The alternative, which is I understand quite common, is that they take them out, wrap them in tissue and then they end up getting thrown away. Mind you, if she doen't have her teeth, how is she eating? I would think weight loss would be inevitable in that situation.

    Jennifer
     

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