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  1. #31
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    dancer123

    Quote Originally Posted by Shedrech View Post
    hi dancer12
    welcome to TP
    canary has been so helpful, I have just one thought
    might this thread help in how you approach your husband (it helped me get my mind round how things are for my dad who has mixed dementia)
    http://forum.alzheimers.org.uk/showt...emory-Impaired
    best wishes
    hi shedrech:

    Thanks for your post, I just need more patience, I'm still adjusting. I thought this part of my life was over when our kids grew up. Now I find myself doing it all over again. I haven't got as much patience as when I was younger. All advice is welcome, it's such a terrible illness and I sympathize with anyone who has to go through it either patient or caregiver.

  2. #32
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    dancer123

    Quote Originally Posted by canary View Post
    Hello FTDseeker, Im sorry to hear about your mum.

    No, dancer, Im not very patient with my OH - as I said, the lessens have been learned from bitter experience , but I have discovered that not saying "no" has made life a whole lot easier. As you say, the hurt is still there and there is still the worry that everything will suddenly blow up, but it is much better.

    Wi-fi is what wireless internet connection is called here in UK. Sorry, I didnt know it had other names in other countries. The internet service providers have parental controls that parents can switch on so that children cannot access "inappropriate material" (by which they mean porn, dating, gambling and drug websites). My OH was always a highly principled and moral man so it never occurred to me that any of this would become a problem..............
    It sounds like a good idea to change will/POA. In UK there is the option to leave your share of your property to someone else (usually children) in your will and OH and I have done this. I have also moved a lot of our savings into an account that is in my name only.
    Hi Canary;

    This is such a great help. Just knowing that there are others that feel the same way I do. When does it end?

    Many thanx again

  3. #33
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    ftdseeker so sorry to hear about your Mum Sounds like everyone is struggling with losing the person who is closest to them.

    My Mum acts completely different to everyone's partners/parents it seems - she goes really hyper and can't stop talking for longer than a few seconds, sometimes I hope they've got it wrong but I'm sure that's just wishful thinking.

  4. #34
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    Quote Originally Posted by Hayleymarie View Post
    ftdseeker so sorry to hear about your Mum Sounds like everyone is struggling with losing the person who is closest to them.

    My Mum acts completely different to everyone's partners/parents it seems - she goes really hyper and can't stop talking for longer than a few seconds, sometimes I hope they've got it wrong but I'm sure that's just wishful thinking.
    It sounds like your mum is in the manic phase. My OH doesnt have this, but I have heard of it happening with FTD - some people with FTD get misdiagnosed as having bi-polar when they are at this stage.
    Learning to sing in a cage

  5. #35
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    Yes Canary that's exactly what happened last year the doctor tried to say it was bipolar but we knew it wasn't. Manic is definitely how I would describe it. Seems you are so knowledgeable through your experiences.

    I can't imagine it happening to my partner when we are "older" so to speak. I think I would really struggle to cope and it must require a great deal of strength and patience.

  6. #36
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    Are you your mums main carer HayleyMarie?
    Learning to sing in a cage

  7. #37
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    No it is my Dad Canary. Are you the main carer for your partner?

  8. #38
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    Yes, Im my husbands carer.
    How is your dad coping with being your mums carer? Its good that you are concerned for your mum as well. All too often the family doesnt want to acknowledge that the problems are due to FTD. Although our (grown up) children know there is a problem, OHs siblings dont believe that there is anything wrong.
    Learning to sing in a cage

  9. #39
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    My Dad is coping fine as she is in the very early stages. Forgive my ignorance but each time that my Mum gets sectioned they put her onto different drugs and she is okay for a month or two then declines again, might it be that eventually they will run out of drugs to try on her and she will not be able to be 'controlled' as such?

    Must be so tough to see your husband in this way, and not at all helpful if his siblings will not accept there is a problem In order to help the best they can surely it is best if they understand his condition fully?

  10. #40
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    You would think that they would want to know HayleyMarie, but I think they are in denial and Ive barely seen them since his diagnosis.

    Im afraid I dont know much about drugs used, so I cant offer advice. I think it would be best to talk to his doctor/CPN. It must be such a worry if shes been sectioned several times. Does there seem to be a trigger, or does it just come out of the blue?
    Learning to sing in a cage

  11. #41
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    My husbands family are in denial too. Their life hasn't changed at all unless you count not visiting as they used to do. They know he still relates to them so I find it hard but the best I can hope for is that they don't make my life harder. But they do.
    I have to accept their thoughtlessness. If I disagree or upset them in any way they avoid me which is taking it out on husband who wants to see them. So far I've managed the huge changes FTD has made to our lives with my family and friends to support me. His do little that is helpful and one in particular blames me when husband gets lost, becomes agitated or eats sweets all day long. FTD is so hard on families and I'm told it's their way of grieving but I so wish they would go away and leave us alone!

  12. #42
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    There is no trigger Canary, just seems that as soon as Mums brain gets used to the drugs the mania resumes, that's my theory anyway and I'm not doctor of course.

    I don't know how family members can be so cruel and leave one person to deal with the situation on their own. Denial is certainly a theme it seems sadly.

  13. #43
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    frontal lobe dementia

    Quote Originally Posted by Hayleymarie View Post
    Hello, my Mum has recently been diagnosed with Frontal Lobe Dementia. She is 61 and her symptoms started last year.

    Just wondered if anyone has any experience of this, it seems like one of the less 'common' forms of dementia and I don't know what to expect for the future.
    Hi I am new to the forum this is my first post, my mum was diagnosed with Dementia December 2015 she was 72 although I noticed she was showing signs for at least 2 years prior to this. She had a PET scan in December 2016 which can tell which part of the brain is affected and her frontal lobe brain cells are damaged and she was diagnosed with FLD.
    The difference you will see in the beginning are changes in social behaviour and her speech will be laboured because the words wont come out, not so much memory loss but more confusion. apparently their swallow can be affected in later stages and this limits what they can eat.
    She cant use a knife and fork and will often eat her food with her hands and she seems very greedy at times and will continue to eat until the food is removed. Although She still recognises everyone she will not engage in conversation.
    For a few years I just thought my mum was being selfish she was uninterested in what was going on in my life and my children's, we used to go shopping every week and she stopped going, she was doing hurtful things and didn't realise it, when we went to visit her there was very little conversation but now I remember her staring at me as if she wanted to speak but couldn't, we thought she had hearing problems but now realise she had difficulty speaking and understanding what other people were saying. She seemed to get worse very quickly within 6 months she got days and nights mixed up, she forgot how to use the cooker, washing machine or if she did put it on there were no clothes in it, when she went food shopping she bought the same things every week.
    She wasn't cooking and she was dressing really badly considering she always took pride in her appearance. her personal hygiene was failing.
    I took her to live with me in April 2016 and its not easy I have my husband and my 2 teenage daughters but I get no help from my sibling as they live away and her siblings are older than her and my father doesn't want to know.
    I don't know what stage she is at but she needs instruction in every single thing now - wash, dress, eat, medication, she has no concept of time and speaks very little. she goes to a day centre 4 days a week so I can go to work but its getting to the stage now where I am afraid to leave her on her own for any length of time.
    I hope this has been of help to you its hard to understand the different types but unfortunately they all end up the same way.
    I wish someone could tell me what stage she is at or at what rate it progresses so I can be prepared.

  14. #44
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    Hello Shazza and welcome to Talking Point.
    The stages of dementia that you will find on the internet dont fit FTD very well, but from what you have described I would say she is at a moderate/advanced stage. As you say, the early stages show problems with speech, behaviour and decision making and other things dont show until quite a way down the path. Unfortunately there us no way of knowing how long this will last. I guess that you are finding it all a bit much now and are wondering how much longer you can go on?
    Im glad you have got some help and she goes to day care. Im afraid most carers find that they have little or no help from family members and one person is left to do it all themselves. Once they reach the stage of needing someone with them 24/7 it becomes very hard work - especially if you are getting broken nights. A sitting service might help, as might some respite in a care home, but if you are struggling you might want to start looking at care homes in your area.
    Learning to sing in a cage

  15. #45
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    Semantic dementia

    Hi, my dad is 57 he was diagnosed 5 years ago, him and my mum are divorced and I'm his main carer, he doesn't have any problems with his speech, even though his is supposed to be one of the main symptoms?? but repeats the same stories all day long he can't sit in silence always talking round in circles. He won't wash change without me telling him to. He does very strange things put food in his socks in drawers, everything goes in the fridge, letters, phone charger the lot. He has gone missing a few times in the night too so he now has door alarms that contact a warden. This seems to help. I feel awful as sometimes I don't have as much patience as I should, I have my dad 2 small children and I work, social workers are useless they seem so sympathetic when I meet with them but don't do much in the way of helping

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