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specialist help for bvFTD

Discussion in 'Younger people with dementia and their carers' started by Peggy50, Oct 31, 2017.

  1. Peggy50

    Peggy50 New member

    Oct 31, 2017
    5
    I am struggling to find anyone who can handle my husband for several reasons.
    He's very mobile and very fast, tendency to dart across roads. He's young -55, and has zero attention span. Only wants to walk and pace and repeat the same words over and over. We have no access to any services for younger people and our local mental health team have never seen anyone like him!! I feel like I know more than anyone who is trying to advise us. Day centre is ok for a few hours but where do I go to find a careworker???
     
  2. JigJog

    JigJog Registered User

    Nov 6, 2013
    233
    Hi Peggy50,

    My husband also has bvFTD. He was diagnosed at 62 and as he has always been a very fit hillwalker/mountain climber, I shared similar problems to yours. Initially I felt lost at sea, as you do and everywhere I turned I was given the same response, 'He is too young. Our services are not appropriate for him.'

    I rang around care agencies, one after another until I eventually found what I was looking for. It took me ages. I found an agency who could supply me with someone who was happy to walk with him and then take him for a coffee, several times each week.

    During the last 3 years, he has had about 6 different carers, who were all happy to go for long walks and at a pace. They were very keen and enthusiastic and they learned his favourite routes and even used to set him challenges along the way, recording time or distance. It certainly kept him happy and gave me a break. Some agencies do have carers who are happy to walk and offer companionship activities for younger people. It just can be tricky to find them.

    bvFTD is quite rare and you will be the expert for your husband. You will have to inform all those who work with him about his condition. Just keep reading and learning. He will need you to inform others. So many haven't come across it before. I had a set of notes saved that I could just print off and give out to anyone that worked with him.

    My OH is now in a care home after 4 years of caring for him at home. I reached the point when I could no longer keep him safe and finding an appropriate care home is indeed another challenge.

    Please let me know how you get on or if there's any other way I might be able to help.

    Best Wishes
    JigJog x
     
  3. Peggy50

    Peggy50 New member

    Oct 31, 2017
    5
     
  4. Peggy50

    Peggy50 New member

    Oct 31, 2017
    5
    Thanks for the help jigjog : ))
    Its reassuring to know that you have experienced the same and its not just that the services in our area are lacking. I am persistent but was getting tired of hitting a brick wall and by the time that happened another few weeks had gone by. Your idea of writing up notes about him is brilliant. It gets very wearing repeating the same information time and time again. Did you look at agencies that had different specialities like Mencap or those that deal with head injuries? I'll keep trying
     
  5. JigJog

    JigJog Registered User

    Nov 6, 2013
    233
    Hi Peggy,
    No I didn't look at agencies that had different specialities but if I was looking again, I certainly would. You need to have a break and this becomes increasingly important for your sanity, so don't stop, keep searching.
    I know what you mean about having to be the expert. OH's consultant has moved on to pastures new and his replacement wanted a meeting in the care home today to discuss things. He just shook his head in disbelief and said he hadn't come across anyone like him before. It makes it very difficult. It is so different from Alzheimer's.
    I've got a lot of support from FTD groups on Facebook. They are worldwide groups but are full of carers experiencing the same problems.
    Stay strong. Keep reading up and keep learning and don't give up on the search for help.

    JigJogx
     
  6. canary

    canary Registered User

    Feb 25, 2014
    4,582
    South coast
    My OH has FTD and has just been referred to a day centre that specialises in head injuries and therefore tends to have younger people. Because it doesnt contain the dreaded D word OH is quite keen to go. We are still waiting for SS to contact for an assessment, but are quite hopeful that he will be accepted.
     
  7. JigJog

    JigJog Registered User

    Nov 6, 2013
    233
    That's fantastic news Canary. Fingers crossed for you.

    Keep us posted.
    JigJog x
     
  8. Peggy50

    Peggy50 New member

    Oct 31, 2017
    5
    Thanks for that. I think its because of where we live but still I know we arent the only ones under 65!! As he gets worse I guess the places for older people seem less inappropriate but we aren't at that point yet and I hate being sucked up into "elderly care"
     
  9. JigJog

    JigJog Registered User

    Nov 6, 2013
    233
    I know exactly what you mean Canary. When OH first went into a care home in August, he stuck out like a sore thumb. Everyone else seemed so old and frail and there he was in his 60s, physically very strong and mobile.

    The first time I went in and saw him napping along with all the older residents at 10am in the morning, I could have cried. As he's got worse, he blends in more and is quite happy just sitting along with the others. I don't like it but I'm having to come to terms with it.

    Pure coincidence, two other men in their 60s with FTD have moved into the same home since OH. All three with FTD are considerably more challenging than the older frailer residents with Alzheimer's. All three are tall, physically strong, mobile guys whose behaviour presents some real challenges.

    JigJog x
     

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