I'm new too and in exactly the same situation
Dear Westie, my husband is 51 and was finally diagnosed with FTD after ten years of turmoil in December 2005. Everything you describe has happened to us, and I am constantly fending off the threat of losing our home, being constantly on the verge of bankruptcy, and facing absolute ignorance and lack of empathy from medical and social work agencies. Our eldest son has abandoned us, and the only moral support I receive is from our fantastic 21 year old daughter, but the burden upon her is really too much for her to bear, and both she and I have suffered major depression. However, I would like to say a few things to you, and any other people out there with relatives with FTD:
1) My husband inherited the disease from his father, and is following the same disease pattern. My husband has been developing the disease for ten years, and although the first few years were absolutely horrific, particularly with his lack of empathy for me and the children, and his violent outbursts etc, I hope it is of some consolation to you that he has recently calmed down, and there are windows of his old self coming through. I have read up on this disease comprehensively, and it is more than likely that your husband's behaviour will get better over time. Of course, because of the physical progression of the disease my husband is slowly losing many of his former abilities, but I want to give you hope that the first stages of this disease will probably be the worst, and things will likely improve between you. I think refusal to accept the disease by the sufferer is a major cause of the early problems we have to endure.
2) It made me mad to read your statement that FTD is rare and the medical profession don't know how to deal with it. That's the same old load of bolony I have been hearing from our doctors for over ten years, but it's just not true! I've come across loads of people with it, and it's just not acceptable that the medics get away with failing to provide appropriate services for these patients. What they really mean is that they can't provide services because people with FTD are too complex for them to handle! Most of these patients previously had a high IQ, can answer back, voice an opinion, and often refuse to be treated like children, and quite right too!
3) I fought tooth and nail to get all the benefits we were entitled too, but even so, they are an absolute pittance. I have just won another battle to get Direct Payments from our local Social Services which gives us the money to buy 20 hours care per week from carers of our own choice, in a place of our choosing, and I want other carers of FTD patients to know it's your right to get them. If anyone wants any help with claiming it, I'd be happy to pass on advice.
4) There seems to be many people on this site advising carers to contact agencies and carers groups, and, do you know, I'm sick of hearing it! Is there anyone else out there who agrees with me that just because your relative has a dementing disease, it does'nt mean you automatically want to join a group and talk about it? I deal with my husband's condition 24 hours a day, why oh why would I want to spend any "me-time" away from him talking about it as well? The best thing a carer can do is to do everything they can to maintain a "normal" life, do "normal" things, be a strong person, and not be put in a category. I'm still me, and you are still you. Aren't you?
