Diagnosed with Frontal lobe dementia

Discussion in 'I have a partner with dementia' started by Janey B, Sep 27, 2019.

  1. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    517
    Female
    Basingstoke, Hampshire
    My husband's biggest problem is the memory, his short-term memory is virtually zero. As to scans he had one a few years ago, but only the one. This was when we lived in Wales and he attended a memory clinic once a year. Since we moved to England the doctor said that she didn't see the point in him attending the memory clinic now that he had his diagnosis. He has been seeing the doctor just once a year. This doctor has now left the practice. To tell the truth I feel sometimes that I am just side-lined and having to get on with it.
    Someone else on here mentioned about "their PWD's latest scan". Should he be having more than just that one he had previously? I don't know.
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    Oh no my Mum was a “sex pest “ for months; craving Male attention, flirting, suggestive language. I even had to rescue a junior hospital dr one time before she exposed herself to him. The loss of inhibitions has caused Mums Male neighbours to flee at the sight of her!! Fortunately medication helps calm & keep her on the steady as of now!

    It’s a area damaged by the dementia.... I’m just thankful that my mother is resistant to any form of technology!!!!
    Otherwise I dread to think......
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    My Dads slipped through the net on more than one occasion so I have no idea? Am in process of trying to get reassessments ofhis needs.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    I think it depends where you live and whether the doctors think the diagnosis might be wrong. OH is having more scans, but is because the doctors havent yet made a diagnosis. Mum had one scan, from which Alzheimers was diagnosed, and after that she never had another one.
     
  5. PJ

    PJ Registered User

    Jan 26, 2017
    327
    Female
    Bristol
    Hi, sorry to hear of your partners diagnosis. I was diagnosed with bvFTD last year & was told there was no medication to help or slow progression like there is for other types of dementia. But since my diagnosis & slow progression I have now been given Donepezil which is normally not good for FTD as they have said it may be a type of Alzheimer’s that is very similar to FTD. I think it’s all a bit of a guessing game.
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    I hope it works for you my Dad couldn’t have it due to contraindications
    X
     
  7. PJ

    PJ Registered User

    Jan 26, 2017
    327
    Female
    Bristol
    Sorry to hear that. I’m feeling quite positive about it atm. I’m going to have another spect scan soon to check progression but on the whole I think I do very well.
     
  8. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    My Mum & Dad are now both on memantine, definitely an improvement in Mums cognitive abilities & she’s less shaky

    Donepezil was meant to be to be the first choice.
    Wishing you all the best.
    X
     
  9. PJ

    PJ Registered User

    Jan 26, 2017
    327
    Female
    Bristol
    Bless you that must be so hard with both parents. I’m pleased to hear your mums cognitive abilities have improved :)
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    Definitely sharpened up - but tiredness seems the trigger for confusion. Makes you realise how important rest is.
     
  11. Florencefennel

    Florencefennel Registered User

    Jun 11, 2018
    20
     
  12. Florencefennel

    Florencefennel Registered User

    Jun 11, 2018
    20
    Sorry to have been off line for a few days, my OH has now come off Rivastigmine and we are going to see the specialist at the memory clinic in 2 months time and monitor in the meantime. I was concerned when I read that the medication wasn’t licensed for FTD so was relieved that the dr readily agreed with me. It’s so difficult to know If I’m doing the right thing for him, it’s such a mine field and a steep learning curve.
     
  13. Janey B

    Janey B Registered User

    Aug 15, 2019
    20
    Still here !!! and struggling have applied controls to the internet and I think it’s helped a little. Spoken with consultant and she has suggested Benperidol anybody got any feedback on this drug please ?Done the usual searches.
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    no my lovely , but I do think it’s a good idea to follow the consultants recommendations. Any questions you have ring the medical secretary & raise your concerns - that way you will get your answers quickly & accurately.

    take care
    & good luck
    Xx
     
  15. Florencefennel

    Florencefennel Registered User

    Jun 11, 2018
    20
    Yes PJ, I agree that tiredness is a constant trigger for confusion, it’s good that you are aware of it. My OH is always worse after a daytime sleep in his chair and says he can’t get his brain to wake up. However, because he spends so much time just sitting, using his iPad and is reluctant to help with chores, he does get a lot of rest. I find it so hard to motivate him. Hope you are coping.
     
  16. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    517
    Female
    Basingstoke, Hampshire
    I try and try and try. I sometimes think I've found something that he can do, maybe help me with something, and I call him and ask if he wants to help. His says yes and I tell him what needs doing. He then says "well I'll leave you to it" and he's back sitting on the settee with his eyes shut.
     
  17. Florencefennel

    Florencefennel Registered User

    Jun 11, 2018
    20
    I think sometimes that I am fortunate that my OH doesn’t have any inclination to wander outside the house, this afternoon I’ve been to visit a very poorly old friend in hospital so left him at home with the dog. He couldn’t remember where I’d been because he’d slept ( our dog joined him!) but was unconcerned. I don’t know if this will last but it allows me some freedom so has to be a positive. However, like Jenniferjean, I find it so difficult to get him motivated, I suggest the least boring jobs which he agrees to do but then the next time I look, he’s fast asleep!
     
  18. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    517
    Female
    Basingstoke, Hampshire
    I've thought that too. My husband also has no inclination to wander. But I'm scared to leave him just in case he did try to find me. He's watching for me all the time, even if I take the bin outside he's looking for me. Sometimes he calls out "where are you?"
     
  19. dancer12

    dancer12 Registered User

    Jan 9, 2017
    478
    Mississauga
    Hi Janey B.

    I feel for you, I really do. My husband was diagnosed with FTD @6 years ago, but he was only 64 years old. My husband also thinks there is nothing wrong with him, it's everyone else who doesn't understand. The first five years were fairly easy but this past year has been unbearable at times. He needs almost everything done for him and gives no appreciation. There is nothing like feeling you are not important, you are a nothing. I know it's not his fault but neither is it mine. I often think who will take care of me when I need it. All the best to you. we all need it. Many cyber hugs & much love & understanding coming your way.
     
  20. Hubby1

    Hubby1 New member

    Oct 29, 2019
    1
    Hi all - my wife was diagnosed with FTD almost 12 months ago aged 51 :eek:
    She had not been quite right for several years and the GP kept saying it was the menopause. Her speech was the main symptom.
    We eventually want private for a second opinion and a consultant sent her for a brain scan. Three months later we got the bombshell and then basically shown the door with the "nothing we can do" message and when asked what to do was told "carry on as normal!". No fact sheet, no support group - zero.
    For the past year we have been bobbing along carrying as "normal" thankfully with a loving family and a good bunch of friends.
    After the shock of the diagnosis my wife ended up in coronary care for a week (Heart racing 280 bpm) and after nine months of drugs which made her feel ill she is now drug free and the heart appears fine again. Apparently no link between heart and brain problems although she had been having dizziness and hot flushes and tingling and palpitations for two years prior to diagnosis!
    Twelve months on there doesn't appear to be any significant deterioration, although she is reluctant to join in big conversations because she fears getting her words mixed. She is thankfully still fully independent, got a better memory than me (I am 56) and holding down two jobs including working in an accounts department. No problem with numbers!
    Everything she is passionate about in life, her family, her jobs, nature, recycling, cleaning beaches, shopping for bargains, she excels at. As I said to the specialist 12 months ago, she is the perfect wife. Prepares our meals most nights, always plans them and does all the shopping and cooking. Now she is off the meds she has bundles of energy and always appears happy and cheerful and a picture of health.
    I realise FTD is different for everyone but I am really struggling to come to terms with the diagnosis. The day after the diagnosis we made a pledge to carry on as normal, live life to the full and never mention the D word again, unless she wanted to. I can't think too much about the future as obviously the outcome for any form of dementia is not good, especially when diagnosed so young.
    The prognosis we were given from diagnosis was 4-6 years (but may be longer) - the fact we got early diagnosis due to going private I am hopefully it will be a lot longer. Certainly 12 months on she doesn't look like a lady three years from the end of her journey. If there is anyone out there who was given a similar diagnosis/prognosis with anything positive to say, I would love to hear from you, either as a carer/partner or indeed anyone with the condition.
     

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