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  1. #16
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    dancer123

    Hi:

    It's a terrible illness, not only for him but for all those that love him. I am just so scared & terrified that I can't handle things by myself. I can't even get an I love you or a hug from him anymore. Sometimes I just feel like running to someone else just to feel wanted again. Are my feelings all wrong. YOU ARE ALL SPECIAL, SPECIAL PEOPLE. Don't know how I can cope, any ideas would be appreciated.

    Thanx Much

  2. #17
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    What problems are you having dancer?
    Is he at the explosive rage stage where you are walking around him on eggshells? Are you dealing with obsessions or the fall out from terrible decisions? Or is the horrible apathy and stimulus overload preventing him from doing anything at all?
    Tell us what is happening and Im sure someone will be able to offer advice.
    Learning to sing in a cage

  3. #18
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    dancer123

    Hi:

    Don't know what it is, he just seems to be avoiding me. I feel like I'm all alone in a big house. When I'm away from him I'm happy (not exactly) but my personality changes and when I'm around him I'm sad and feel like crying all the time. I'm glad when he goes to bed at night and I'm all alone with my thoughts. Maybe I just feel guilty when I'm around him and he feels guilty when he's around me.

  4. #19
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    Quote Originally Posted by dancer12 View Post
    Hi:

    Don't know what it is, he just seems to be avoiding me. I feel like I'm all alone in a big house. When I'm away from him I'm happy (not exactly) but my personality changes and when I'm around him I'm sad and feel like crying all the time. I'm glad when he goes to bed at night and I'm all alone with my thoughts. Maybe I just feel guilty when I'm around him and he feels guilty when he's around me.

    Before he was diagnosed I couldn't understand why my husband was ignoring and avoiding me. He still does but now I know why still hurts though. I used to yell at him for treating me like furniture! Divorce time. When I'm home hes in a different room but if I'm out all day he goes for a walk. I'm told it's because he misses the routine of me being home. ( I think he just misses me). Processing language, people or tv, is hard work for people with semantic FTD. What 'canary' calls stimulus overload switches my husband off. He mostly listens and answers family and close friends but 'rests' his brain with me as it's so tiring. His doctor says to keep language as simple as if he was 5 years old to be sure he understands and is more likely to respond.
    Like you I cope by having time away from him. So far he's been able to get his own meals but suspect it won't be for much longer. Tell myself that missing meals won't kill him and he gets plenty of calories from the sweets he's always eating.
    His doctor/neurologist said last week the FTD is progressing very slowly so I can still enjoy my social life for a bit longer. I was relieved and happy to hear it. I was feeling i just wanted it to be over knowing the worse was to come. Heart attack in his sleep. But not yet. It is a hard road ahead. As you say it's the loss of our future. It stinks and I feel just the same as you. We're entitled to feel anyway we want. 😬
    Do you have family or friends to support you emotionally or practically? Gp or memory clinic? Dementia support group? You sound as if you're coping alone. I've been astonished at the kindness of others since husbands diagnosis but sadly disappointed by those who can't cope so do little or nothing for him. Even with help it's hard. I retired when he was diagnosed to spend quality time together but it was too late.
    There don't seem to be many posts from spouses/partners but hopefully others can share experiences and suggestions.

  5. #20
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    dancer123

    Hi:

    Thanks for reply. That makes me feel better and I'm beginning to understand more and feel less alone all the time. Yes I do have friends and I'm starting to think about not going out as much because I don't want him to feel so alone all the time More than all rlse I'm really terrified - for him, for my kids and for myself not being able to cope. I try to keep saying to myself everything happens for a reason and I just need to find out what this reason is

    Thanx much. I feel better just knowing that someone else feels the same way I do and I'm not alone..

  6. #21
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    No, you are not alone. Apathy, loss of empathy and emotional blunting are all early symptoms of FTD. My OH likes to spend hours in silence, on his own in a quiet room with his android tablet. He gets stimulus overload and any noise will set off an outburst of rage, so I cant have music on, or TV that he doesnt want to watch, housework and other work in the house is difficult and Im tip-toeing around like theres a sleeping baby in the house!

    Yes, I miss the hugs and other shows of affection too. I have recently come to the conclusion that most of the time I am just not in my OHs mind. He is not purposely ignoring me, he simply does not think of me. I used to complain that he treated me like a housekeeper, not a wife (and I too considered divorce), but since his diagnosis I understand why. It is a hard thing to get your head round. I have had to stop thinking about myself as a wife and to think about myself as his carer.

    When you are dealing with FTD routine and environment are everything. By routine I mean, of course his routine - its no good trying to impose your routine on him OH has his own rituals and routines that help him get through the day without having to make too many decisions and I have to go along with them. His decision making is very, very poor and he has made some spectacularly bad ones. I can still leave him for a few hours a day (he is still in quite early stages), so I have joined a couple of groups to give me some sanity and when things get too much I go round to the local library. It is becoming increasingly hard to find things for "us" to do, although he will go to a couple of coffee groups. They are not dementia cafes as he is still very aware of his surroundings, but most people there have experience of dementia and are very understanding.
    Learning to sing in a cage

  7. #22
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    dancer123

    Morning/Afternoon/Evening:

    I'm in Canada so I'm in a different time zone. Thanks for all the help. It is a lot clearer now. I was so confused, He always says it's not him, he's okay - I'm the problem. He is in early stages too. There are many help groups that I can go to that can help me understand the illness more, what to expect, how to help him & myself to cope but I don't want to leave him alone so many times. Since the kids have grown up, I like to socialize. When he was working it was fine, but he's home now and I don't like to be gone 5 days a week. I guess I've got to set priorities. I can't take him on long trips because he tends to get tired. WHAT A MESS.

    Thanx again for helping.

  8. #23
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    Yes, it is a mess dancer. My OH says there is nothing wrong with him and that its me too. Its a symptom of dementia called anosognosia which means that he is literally unable to understand that there is something wrong, so in his mind it has got to be me. The trouble is that as he has no short-term memory loss he is very, very good at convincing people that, indeed, there is nothing wrong with him. At first he was diagnosed with depression due to marital problems (!) and the doctors thought I was making everything up. Even now his GP (family doctor) doesnt believe the diagnosis.
    Learning to sing in a cage

  9. #24
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    dancer123

    Hi:

    I feel like I'm looking in a mirror. You are so sympathetic & knowledgeable about this illness. You must have done a lot of research on it. It feels like I've met half sisters. It absolutely helps to talk. Thanx.

  10. #25
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    Im glad I have helped dancer
    My mum has Alzheimers, but this is a very different beast - very, very different in the early stages. Might I suggest a couple of things that I have learned from bitter experience?
    1 - get POA. OH paced and fretted, accused me of trying to take him over, but we both had POA organised at a solicitors (he wouldnt have done it otherwise)
    2 - Try and protect your finances as far as possible. Not easy to do as although they can make some horrible financial decisions, if they still have capacity they can (and do) object to anything you try and do.
    3 - Turn on the parental controls on your wifi and change the password. 'Nuff said
    4 - Learn to say no without saying "no". Yes we can go out, but its raining now so lets go tomorrow. Yes you can buy a pocket watch with pictures of naked ladies on it, but I think a plain wristwatch looks more classy. Yes we have no bananas.........
    Learning to sing in a cage

  11. #26
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    dancer123

    Hi:

    All advice is very appreciated.

    Already have POA & wills written by attorney. Thinking about changing my will with different attorney. He is my POA and he is mine. If I go first then everything goes to him, including house - I'm worried he might sell for a nickel (if he is not declared incompetent) and the kids would end up with nothing. So I'm thinking about getting my primary on POA changed from him to my sons so he can't get total control. Don't understand what you mean by WiFi controls though. I'm learning to say NO nicely but the hurt is still there and will be for awhile.

    It's like losing someone twice.

    My dad had this illness and I saw what it did to my mother so I'm not new to this. I was married at the time but I still saw enough of what was going on and I could see how frustrated she was getting.

    Again all your knowledge & advice is much appreciated. You must be so patient with your husband.

    All your help is much appreciated.

  12. #27
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    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.
    Hayley,
    my mother has FTD- she is 61 and coming to the end -

    but i am still hopeful

  13. #28
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    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.
    Learning to sing in a cage

  14. #29
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    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
    And all shall be well and
    All manner of thing shall be well
    Julian of Norwich & T S Eliot

  15. #30
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    Hi Shedrech. Thanks for posting the link.
    I must say, though that compassionate communication doesnt work so well with FTD until they are pretty advanced. I use it all the time with mum (Alzheimers) and have done right from learning about it, but OH is still very well orientated in time and space. People with FTD often dont lose their short term memory, dont keep repeating themselves, dont get lost, confused about where they are, who people are or what is happening around them until an advanced stage. So OH can usually see right through the "love lies". This is extremely irritating when OH is gripped by his latest delusion or obsession. There will come a time, though, when it probably will work.
    Learning to sing in a cage

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