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. Judy Jump

    Judy Jump Registered User

    Jul 4, 2015
    6
    Scottish Islands
    They tell me, and I read, that dementia can tear families apart. Our diagnosis, for it is 'our' diagnosis, was delivered on December 19th 2013. It became clear after a time of reflection that the diagnosis was not the beginning. The beginning began years ago.
    Our marriage has never been plain sailing, for me anyway, and I have bottled a great deal up over the past 43 years. Our five, now grown, kids knew it was such, but, understandably considered a lot of what went on, the norm. I have never been hit or cheated on, and nor does my husband drink too much. Well, that makes you lucky, is what I often heard and subsequently believed, telling myself that I was an ungrateful wretch who needed to be thankful for my blessings. Well, that may be true, but it doesn't address the needs I had, nor have right now, although it's a bit late for addressing now!
    My husband has consistently refused to agree with the diagnosis, nor discuss it with me. Communication was never his strong point. Needless to say, this head burying left us all in a state of unrequited shock and we all reeled away into our caves, bar me, who doesn't have one to reel away in to. I tend to show my feelings, to talk about them and the past 18 months or so has been the most horrid ever, because I found my kids 'absent' for me. For him, their dad, they were encouraging and uplifting, allowing his ostrich like behaviour. I met the same with the dementia support folk who came to see us. How is he? is always the first question and somewhere much later I get asked how I am coping. I feel there is a big lack in support in that very area - to be precise, the time just after diagnosis. We all needed to know what the hell to do next, how to deal with our feelings, how to express them and to whom. I saw a counsellor for a bit, having to traipse to the mainland via ferry to do so, but we never moved anywhere with our sessions beyond a kindly ear and an hour of time.
    Now, he has had the memory test and not done well, although he refuses to let any of us know the result. He has been angry with two of our kids who 'interfered' - one who had to tell him he could no longer employ him as Boat Skipper (obviously), and the other who called on Power of Attorney in order to get some information from the doctor. Mostly, my husband has been angry with me, and if one more person says, Well you always hurt the one you love' or some such platitudinous twaddle, I will have to scream. My husband has also been to see a specialist and goes again on Wed next, but the results of those meetings are banned from the rest of us. He is not far enough down the track to have PoA called on in order to get the information, and his biggest SHOUT is that we are taking him over. As a controlling man, this is understandably the very worst thing.
    I went to see the GP last week and we talked about my exhaustion, more mental than physical, as I have to bend over backwards to make home life pleasant. The GP said I should call a family meet, but our kids live all across the world, so a group email is my only recourse. I sent one once before, an indepth honest one and received a dose of angry responses from my kids. I don't blame them. I told them I had planned to finally leave their father, and then came the diagnosis, throwing all my plans to the four winds that feel like 24 half the time. Perhaps I shouldn't have said that, but I did. Anyway, after much thought, I decided to stay. We live in a remote place and it just felt horribly wrong to skip off into happiness. I don't regret my decision.
    So, this morning, before heading off to work (cleaning a holiday home) I sent that email, saying what I needed and that I needed them to listen up and support me. We are a very close family indeed, and the only reason they turned against me back then was because of their own shock.
    I wait to see their responses, nothing yet.
    I will have to write a book when all this is finally over. There are massive holes in the dementia support programmes, if there are programmes at all. Those who do work in this area are wonderful good people but floundering under the weight of what is now a fast growing epidemic.
    Does anyone relate to any of this?
    Good luck to all you carers.:D
     
  2. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,535
    North East England
    I don't have the answer, Judy Jump, but wanted to welcome you to the forum, and to say that I think all too often carers are forgotten about in the scheme of things.

    My mam has Alzheimer's, and yes it's devastating to see her unable to look after herself, to see her shrinking into something almost unrecognisable as my mam, and I'm desperately sad about it and sorry for her. But the person I worry about the most is my dad, her carer. Her illness has reduced his life so much that I feel there are two victims to this vile disease. And the worst thing is that he is aware of it, doesn't forget anything, and lives and breathes it 24/7, whereas my mam lives in the moment and remembers none of the trauma or the heartache.

    I sincerely hope that you get good responses to your email from your children and that even if they can't be any practical help, they offer you the emotional support that anyone in your position needs and deserves.

    xx
     
  3. Jennyc

    Jennyc Registered User

    Oct 3, 2011
    72
    Kent
    I think I understand

    Dear Judy

    I think I understand and my circumstances are very similar to yours in many ways. Ours was not a good or happy marriage though we have two wonderful daughters who wouldn't be here without it. My husband was bullying and aggressive, yet very dependent, suffering from bouts of depression from time to time. He worked freelance from home as an illustrator, which I suppose made him isolated and not good at social interaction and when depressed, couldn't work. I became the main breadwinner when the girls started school, though at the same time I still seemed to be responsible for most childcare, housework, ferrying of kids here and there, and caring for his mother who I'd stupidly agreed we would buy a house together with as this was something which would make him "happy" - living out in a larger house in the country than we could afford on our own, that he would be able to work better etc, as she lost her sight not long after we bought a house jointly, and we didn't much like each other anyway. It was a disaster which continued for 17 years.

    People say why didn't I leave? Well, the financial implications were very complicated, i didn't see how my husband would support himself if I left with the girls, and if ever I said I wanted to go, my husband would threaten suicide, something I felt I couldn't risk and spend the rest of my life feeling responsible for. So I stayed. I had some good friends, he didn't like going anywhere or doing anything other than his vegetable gardening, he'd stopped doing any paid work since he was in his early fifties, maybe caused by the depression, or maybe just because he didn't want to as I earned enough to keep us going, and any hint from me that he might contribute was met with either anger or aggression, and I took holidays with the children, going to stay with my mother, kept house, fed him and maintained a semblance of a marriage.

    My plan was that when I retired I would do some of the things I had wanted to do all my life, like travel, while he could stay home where he liked to be, kept by me, and continue to grow vegetables. The girls were now grown, married or settled and eager for me to have some sort of life of my own. They had always been aware of the problems since they were small children, it's hard not to notice that your father seems to do very little but expect an awful lot and be capable of creating the most miserable atmosphere if he wasn't getting what he expected.

    Four year's ago I retired. Four year's ago my husband was diagnosed with Alzheimer's, though there were symptoms I should have recognised for some year's before. So there I was - stuffed!

    I am maybe luckier than you in that I have full support from my daughters. But it is very hard not to feel anger, resentment and many other negative thoughts. I hadn't actually planned to leave as I didn't see how my husband could cope on his own and anyway, I'd made those marriage vows, but I certainly expected a time to live my life to some degree as I wanted to.

    Yes, more help and support for "the carer" is needed, I think. My husband forgets all the time what has happened and seems contented as long as he is clothed, fed, entertained etc, and had someone on hand to answer the same blasted questions all day every day and to take him out and take care of him. I don't forget any of it, and I have to live with it all the time, and it's so for all those who care for someone with this wretched condition. it's to some degree like having a child - but he lost my affection many year's ago, so I don't love him like I would a child, I am simply responsible for him. And stuck with him. And this could go on for years and years. He is now 73, me 66. Oh, oh, oh.

    I find myself getting depressed. I tried some on-line counselling for a time and it helped a little, but as I cannot change the situation, the depression creeps back. I was always such a positive person. I feel I am being eroded. My lovely older daughter says I must continue to do what the counsellor suggested, find things I want to do each week, see friends, take exercise, but sometimes it seems so like hard work.

    You are right. It is an illness that affects the whole family. And the assumption is there that you do all your caring out of love for the person you care for, which you and I know is not always the case. I too don't want to be asked how my husband is - I want to be asked how I am!

    No answers. I just know I mustn't sink into depression and neither must you, and that anger is rather pointless. I so hope your family will understand you and support you, and that you get from them something to help you through these unwanted times.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,669
    Kent
    I don`t have the answer either Judy Jump but I can relate to your suffering .

    The only thing I would say is I would have downed tools if my husband had refused to allow me access to information. Once my husband was persuaded to seek medical advice I assumed I would accompany him and there was no question of him objecting.

    However , I found discussion was not necessarily the best way forward with someone with a diagnosis of dementia. It can lead to misunderstandings and confusion , especially with someone who is in denial.

    I used to write to the doctors a couple of weeks before appointments, detailing all my concerns. This avoided confrontation in my husband`s presence when he told the doctor he was fine and there was nothing wrong with him.

    Your children will have divided loyalties and their father is not their responsibility. You might need to decide whether or not you can continue as primary carer and inform Social Services of your decision.

    Please don`t think I`m unsympathetic. My husband was very difficult and really nasty to me at times. I could only continue to care for him because we had had a good marriage to look back on and had shared a deep bond, even though my husband had lost sight of this in the early and middle days of his dementia. . If we hadn`t I dread to think what I would have done.

    It might help you to discuss this with someone at the National Dementia Helpline.

    http://forum.alzheimers.org.uk/faq.php?faq=resources#faq_resources_helpline
     
  5. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Hello Judy, i hope you get the support you need here. We are all carers and will listen and not judge. I hope you find a way to carve a life out for yourself too. You might have to live with not knowing what is happening with your husbands illness until there is a crisis and he ends up in hospital. Remember that nobody dies from being angry so if you are going to stay you need some ground rules for your own sake. As for your kids you might be expecting too much. Dementia and news if an unhappy marriage would be too much for most. There world is being rocked. I 5hink you need support for yourself. Is there a carers group you can join? If not keep posting here. We will try to keep you strong.
     
  6. Lilac Blossom

    Lilac Blossom Registered User

    Oct 6, 2014
    500
    Scotland
    #6 Lilac Blossom, Jul 4, 2015
    Last edited: Jul 4, 2015
    Dear Judy

    I can relate to so much of what you are experiencing.

    I had been caring for hubby since he was diagnosed leukaemia (CLL) in 1999. For a number of years problems cropped up due to CLL and the side effects of treatment resulted in poor mobility - he shuffles about using zimmer and is housebound. His physical problems masked signs of dementia until it became obvious to me and eventually he was diagnosed vascular dementia.

    Keep posting Judy - although we are all different, there are enough "overlaps" in our experience for us to know that we are not alone.

    Lilac xx
     
  7. Judy Jump

    Judy Jump Registered User

    Jul 4, 2015
    6
    Scottish Islands
    Thank you all

    Wow you guys thanks so much for those quick wise helpful upbeat comments and stories. I know so well that there will be days like these and then, suddenly, things mellow and troughle along in quite a nice way. I think I am tired out and it is not the time to think too much! I will indeed click on that link and talk to someone, although what I really want (on days like this) is for the world to stop so I can get off. In termes of being able to be Primary Carer, I know I can do that, and, like you, value my marriage vows. My kids are good kids, really good kids, but, as someone pointed out, the way their dad spoke down to me and put me second or third whilst claiming he always put me first, was the family norm. I never stopped him, because life then became unbearable for all of us as he wouldn't let a challenge go, maintaining that, as head of the family, he deserved unquestioning loyalty. I am braver now, and take no such remarks. Sad, though, to think it's all a bit too late now because kindness and gentle understanding is what he now needs. Next Wed I may just go with him to the specialist meeting. Even if I spend two hours outside the door, at least I will be there and I doubt the doc will allow that anyway.
    Thanks again carers. And may your lives get easier. x
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,669
    Kent
    Go with him and let the doctor see he is shutting you out. If you have time write a letter to the doctor beforehand. Give him a day or two to read it before the appointment. If you post it first class it should get there in time.

    Good luck. There are many of us behind you.
     
  9. Judy Jump

    Judy Jump Registered User

    Jul 4, 2015
    6
    Scottish Islands
    The freedom of speaking out into safe hands

    On reflecting over my first post, and your fine responses, with your stories and ideas and encouragement and wisdoms, I find myself, now with a clearer head. This, in the past, after a rage against the short straw-ness I considered my life to be, I forgot to see the good things, the wonderful things, the happy things. My happy thoughts are my children, but there have been many happy times in such a loooooooooooooooong marriage. I fell in love, no mistake and it was obviously Life's plan to grow me into something quite unlike the picture I held in my young head. So be it. They say that, in times of struggle, you learn new things, and, if you are not a halfwit, you change and grow. Well, I am higher than Mount Etna now and thankful for it. I may be tired, I may watch others through green eyes, as they laugh and share a close moment; I may look at my sister's marriages and wonder how I didn't get those husbands (couldn't manage two by the way!) but I didn't, and if I had, it might not be the case that I have five wonderful children plus their five wonderful partners who love and support me. On the flip side of that coin lies my husband, who isn't easy and fun and full of song and painting and writing and nonsense and hi-jinx like what I am, although they all love him very much, as do the millions of grandchildren. They are loving, but they don't seek him out as they do me. I am blessed indeed and this is what I wanted to say to you all. I bet on my bonkers life that most of you have stories of considerably harder hardships than I have ever known and that thought is a humbling one.
    My husband adores me, follows me everywhere. He fell in love too, with a wild and extremely naughty 19 year old and his love has never wavered although his way of showing it when I don't do what he wants is not good evidence of that love. I guess his youth, his familial history, his own baggage grew quicker than I did. He was jealous of the time I gave to each child and showed it. He was jealous of everything about me and I bet he didn't want to be.
    I have probably overstepped a few priveleges by writing yet more, but I just wanted, really, to highlight the fact that by being able to write out how I feel without the fear of being judged is rare and wonderful and thank you. I am glad I found this forum, very glad indeed. maybe one day when I am not so sorry for myself, and missing my husband who has never left my side for four decades, I will be able to help someone too.
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,669
    Kent
    Well said Judy. :)
     
  11. Judy Jump

    Judy Jump Registered User

    Jul 4, 2015
    6
    Scottish Islands
    On reflection

    Hi jenny C and thank you for your story because on reading it this morning I have more to say. Firstly, I slept well - for me to sleep well is remarkable. I even managed most of the night, waking only once and going straight back to sleep. There were no nighthorses (as I call them, bizarrely I often dream of horses) and no twitching. I woke happy, relishing in the fact that I have two whole days to myself. No work, husband away with one of our sons down south, just me and the little dog. I thought to myself, I must have more of this, and, yet, in thinking that way, I feel I am not enjoying this actual moment of peace, of no questions, of not having to control my irritation as I clear up yet another forgotten mess. Like a trail of toast crumbs and jam from kitchen to sitting room etc. But the thing I wanted to talk about to you was what you said about anger. It is a pet subject of mine and I have spent some hours thinking it through. Anger is not allowed in our land. Anger is a bad thing, a waste of time (you said) and yet it is a perfectly natural emotion. An emotion being something that just arrives. We don't control them, they just come. What we do control is the manifestation of them, the outward show. If, as in my youth, I explode, shout, scream and rant, then I am letting my anger out, erhaps, inappropriately. Who needs a child having a tantrum at a tea party or on a train?
    But, as I get older, I study these things, especially for my writing.
    There is always the option of channelling that powerful energy of anger into something creative, and this is my line of thinking. I believe that letting the anger in, instead of pushing it into a tumour, or back pain or stomach flux or depression is the right way to respect it, for each emotion is a gift (I think). However, it takes some study and some courage to let it in, because we are all, if we are honest, afraid of its power to do damage.
    I keep a private blog, just to note down how I am feeling. For me as a writer, I find the keyboard much more productive than a pen and a diary. The words just flow down my arms and onto the screen and because the blog is private I can say what I like. My ultimate plan is to write a book on all of this but the time is not right yet, nor have I completed my part in this journey (hate that word but have yet to find an alternative!). To date, a lot of my blogs have been on Angry. Investigating the emotion, asking where does it go if not out? Punching a pillow doesn't cut it for me. I think my reason for being so fascinated with anger is that I have spent most of life suppressing it and making myself unwell as a result. Now, that my husband has no idea what is really going on, being happy as long as nothing rocks his boat (like yours) my ideal dumping ground has been removed, not that it ever did me any good! So, I have to find another way to use that powerful energy.
    I am so glad your daughters are wonderful. It cannot be easy for a grown child to stand for their mother against their father, which is how it must look to them after being a part of a less than marvellous marriage. Perhaps they have now found a way of standing for both, but I think my kids are just learning those ropes. I did get a lovely response from my only daughter, nothing yet from the four boys, but boys are much less able to communicate about emotions I find. She encouraged me to continue to stand up for myself and not to get lost in poor little me. She meant that kindly and she is right. She also acknowledged that it can't be easy for me having lived under her dad's control for so very long, to find the right shoes to walk myself away into my own skin. I am learning too, for I thought I was in my own skin, and yet it seems I had built myself a new one, one that was fashioned from self-defence, defiance and secrets. Now I no longer need that skin and yet it is the only one I know. Baby steps!
    So, on we go, we tough, wise, loving, loyal women, still with so much to give back to a hungry world. I wish you a happy sunday, and much light on your horizon. Keep yourself fit and well, because there is something out there just waiting for you and for me and for all of us. We can no longer control our circumstances, but we sure can control ourselves within them. Much love JJ
     
  12. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    I suspect many of us who find ourselves pushed into the situation of being carers for husbands who, for various reasons and without the advent of dementia, we might otherwise have parted company from, would empathise with you. I have been with mine for 41 years. He had an affair when my youngest daughter was 9 months old and although to the best of my knowledge he has not strayed since I sometimes regret not bailing out when I had the chance and, if I'm honest, a reason people would sympathise with. My OH had his first TIA over 20 years ago and his condition had gradually deteriorated until there was a more serious incident two years ago meaning he now needs 24/7 supervision and more personal care and attention than I had ever anticipated having to give.

    I have read on here several times, and I think I have said it myself, that no-one can make you be a carer. The reality is very different when it comes to the crunch of actually saying I can't do this any more and consigning the person you have lived with for years to a care home whilst there is still recognition and some capacity to enjoy life. My daughters, bless them, have said it is entirely my decision but they will support me whatever I decide and they are always there for me, so in that regard I am lucky.

    I hope things work out for you and you get the support you need from your sons as well as your daughter.


    Sent from my iPad using Talking Point
     
  13. Jennyc

    Jennyc Registered User

    Oct 3, 2011
    72
    Kent
    Thank you Judy Jump, what an encouraging message.

    You are right about anger and suppressing anger, I think it is why I have had high blood pressure for so many years though I am not overweight, take exercise and do all the right things - it is years of suppressing my feelings for the sake of keeping the peace, protecting the children, not causing another row ...

    So now I need to find somewhere to channel the anger. Writing is a good option, I like to write. I used to paint too, but stopped some years ago.

    I'm so glad your daughter is beginning to understand you, and I know what you mean about the poor little me bit, it certainly won't help. I do hope your sons too will find ways of letting you know they support you. You sound as if your own strengths will help to see you through, There do seem to be a lot of us who are in similar circumstances, but as you say, we are strong women and will keep going, and I'll try to believe, like you, that something good will eventually come out of this.
     

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