1. BarleyMow

    BarleyMow Registered User

    Feb 26, 2008
    1
    Luton
    My beloved husband of 40 years, Andy, has just been diagnosed with semantic dementia. He is 59 years old. For the last two years he has increasingly struggled with language, word finding and understanding. My mind is in a turmoil at the moment. Full of horrible thoughts. I miss him so much already and don't know if I have the strength to lose any more of him. I just can't bear it. Has anyone else out there been through a similar situation. Thanks for listening. Any advice, any words, anything.... please
    BarleyMow
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,560
    Kent
    I am so sorry BarleyMow,
    The loss of language heralds the loss of communication and would sorely test the morale of the strongest of us.
    I can only suggest you make the most of your time together.
    We do have members who are facing the ordeal of PICKS as you are. Hopefully you will get some response from them.
    Love xx
     
  3. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Hi BarleyMow,

    I'm sorry to read about your husband's diagnosis. 59 is so very young.

    My Dad was originally diagnosed with mixed Alzheimers and Vascular Dementia but has now been diagnosed with what the consultant referred to as 'Disfluent Semantic Dementia', although at 83 he is very much older than your husband.

    I found this on the web
    http://www.ftd-picks.org/?p=diseases/semanticdementia

    and another member found this for me
    http://www.pdsg.org.uk/clinical_information/semantic_dementia/

    They may not help you come to terms with the diagnosis, but there is some good information there. I found reading the symptoms like reading about my Dad, and that did help a bit.
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi BarleyMow

    My husband John has Primary Progressive Aphasia, which is another variant of this family of dementias.

    Like your husband, John started by losing names, then gradually his language disappeared altogether. He became totally dependednt quite early, because he needed me to interpret for him.

    It's very hard to live with, because it can be so isolating. The important thing is to set up a support mechanism, so that you can have some time to get out and talk to people.

    The bonus in our case was that the progression of the disease was very slow for the first seven years, there was no personality change, and no aggression. This is typical for PPA. I believe things are rather different with Pick's, so I hope you and Andy are lucky.

    Keep in touch, you'll find lots of support and advice here. I don't want to load you down with too much at the moment, but I'm here if you want to know more.

    Love,
     
  5. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    Hello,

    My husband is 56 and has Alzheimers but loss of language and understanding were for awhile the main indicators. It is very lonely when you have been so used to lively conversation. And now any talking has to be lead by him. I can't ask any questions, no matter how simple, as he just can't answer them.

    I feel that in many ways I am very lucky that we have 2 young children so I do get to chat, even though some of their conversations would test the patiance of a saint :)

    All I can say is that somehow you will find the strength, but is is so hard and each time you think you have a handle on things there is another change to adjust to.

    Take care and keep posting on hear there is so much support and practical advice.

    Jackie
     
  6. Westie

    Westie Registered User

    #6 Westie, Feb 28, 2008
    Last edited: Feb 28, 2008
    Hello and welcome. I'm very sorry to hear about Andy's condition.

    My husband is 53 and has Picks disease. He was diagnosed 18 months ago and displayed early symptoms for a couple of years before that. It's so hard when a younger person is affected. Seems so very cruel for everyone involved and I'm sure you are finding it difficult.

    Although Peter doesn't have speech problems at all at the moment, he does have lots of behaviour/emotional/personality/concentration problems. He is extremely restless and paces constantly. Earlier, he was very anxious and agitated but that has lessened now either due to the passage of time or the medications he is now on. I'm not absolutely sure which - but I do know he is calmer in himself.

    My lifeline in the early days after diagnosis was a wonderful CPN (community psychiatric nurse) who visited us regularly and co-ordinated his care. She arranged for Peter to attend 2 day care centres which he really enjoyed. She also arranged a sitting service for me which meant Peter had company some days when I went to work. The referral to her was made through the consultant - I do hope you have the same service.

    The main support for me, rather than Peter, was and still is the local Alzheimer's Branch. I attended one of their carer's courses which ran over several months. Lots of useful information and I made contact with other carers who live locally. Ok - I was by far the youngest, but it didn't seem to matter much. We were all struggling to cope with our own particular circumstances. I still meet up with these people every couple of months and we share experiences.

    I also attend the monthly carer's group run by the Alz Society which again I find a big help.

    Sorry, if this is all too much, too soon. I can remember being told about these things early on and my reaction was very negative. I recoiled from the thought of this new way of life - I wanted my husband and old life back. I didn't want to meet new people and discuss the horror (to me at the time) of dementia. But, very gradually, my attitude changed and I appreciated the real genuine care and help I received from everyone I met through these sources. Pity the same cannot be said for quite a few of my so called friends at the time.

    Be kind to yourself and give yourself time to adjust to the diagnosis and all it's implications. Try not to panic about everything immediately. Having said that, one thing you must arrange if you haven't done so already is a Lasting Power of Attorney. It is much easier if this is done at the early stages.

    I have found TP a wonderful support and I'm sure you will too.

    Mary-Ann
     
  7. Deeessex

    Deeessex Registered User

    Jul 16, 2007
    36
    Essex
    Hi All
    As I go further on in my journey with my husbands dementia diagnosis I realise a few things.
    1. Everyones journey is different
    2. I am not alone
    3. I have times when I want to scream shout and shake my fist at the world and thats OK
    4. Try to think of two positives for every negative
    5. Friends and family won't be able to help unless you let them
    6. In your saddest hours ranting on TP is a blessed relief
    7. You can still love someone and the memory of the person even when you think they have "left"
    8. We all only have memories at the end of each day so lets remember the good things
    9. You can still laugh and live life - I always think if the boot was on the other foot I would want my husband to enjoy life. I'm sure he wants that for me too and I want it for us together however if its not always possible to have that together I still owe it to him, our children and myself to live life to the full.

    Love to All
    Dee
     

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