1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    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.

Hello. I'm new on here.

Discussion in 'I have a partner with dementia' started by WelshKat, Feb 8, 2017.

  1. WelshKat

    WelshKat Registered User

    Sep 28, 2016
    4
    Hello. I am new on here. My husband is 58 and was diagnosed with frontotemporal dementia two years ago. Looking back, he's probably had it for around four years. He is steadily declining. Last week I made the shock discovery of finding badly soiled underpants and a few days later he'd wet himself. I'm assuming this means he's entering a new 'stage', though I know sometimes the stages don't mean much and that everyone's dementia is unique to them. I cannot get him to do anything. He thinks there's nothing wrong with him, won't wash/bath, thinks he can walk into any job, is obsessed with the TV, and is just gradually withdrawing from daily life. I'm assuming this is normal. Have looked at lots of posts on TP and this seems totally normal for FTD sufferers. I feel like I am going mad too! I am 52.
     
  2. cuppatea

    cuppatea Registered User

    Oct 28, 2016
    394
    South Wales
    Oh poor you both you are young to be going through all this. My husband also has ftd, he is 77 and I am 70 even I feel young to do all this. My husband is catheterised and has occasional accidents the other end. He still thinks he could drive although he can barely stand - Oh I've got an automatic and I can use the pedals - as if that's all there is to it. Hope you've got support to help you bear it all, we're all leading fast on a steep curve. Are you in Wales??
     
  3. WelshKat

    WelshKat Registered User

    Sep 28, 2016
    4
    Hello Flossie2016. Thank you for your reply. I am Welsh, but am living in Bedfordshire. Sorry to hear about your husband too. It's an awful disease. I have no support whatsoever at the moment. This all happened quite suddenly. By the time it's all been diagnosed, you realise that all of a sudden 3/4 years have gone by and then things get very bad very quickly. Like a lot of people on TP, this has hit us all like a thunderbolt. I never knew much about dementia, but now I feel like I could write a book! It's so good to know we are not the only ones dealing with this awful thing, and the havoc it wreaks.
     
  4. dancer12

    dancer12 Registered User

    Jan 9, 2017
    451
    Mississauga
    Hi WelshKat:

    First off WELCOME, you will find much useful information on this website and you will come to realize you are not alone. My husband was also diagnosed with FTD. I have learned so much from here. There are so many people willing to help.

    It is frustrating & very lonely. I'm only 59 and I was expecting to go travelling when he retired and fall in love all over again. Well that quickly changed when we got the diagnosis. It's like going to bed with one man and waking up next to a different man

    Hope you find all the information you need to maintain your sanity. Most important thing is TO TAKE CARE OF YOURSELF.

    You have found many friends who are willing to share their experiences.
     
  5. Alicenutter

    Alicenutter Registered User

    Aug 29, 2015
    560
    Massachusetts USA
    Hello WelshKat. It's very late where I am, but I wanted quickly to recommend the ftdsupportforum.com, which is based in the USA but has members everywhere. The American Association for Fronto-Temporal Degeneration is a good website too (theaftd.org). My husband has the same diagnosis. Love and good luck.


    Sent from my iPhone using Talking Point
     
  6. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    250
    Welcome

    Welcome WelshKat
    You'll find lots of help and support here on TP. There are times when I don't know what I would do without my TP friends. They have given me information, made me laugh and picked me up when I have reached rock bottom.
    Hope you find the same.
     

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