Becoming a dementia Research Network volunteer after being a carer

and now I am angry having FTD dementia secondary to neurosarcoidisis. What it does to you is steal your life. I was first apathetic when I got the disease and now angry at what the doctors didn't do years ago for my neurosarcoidosis which preceded the disease. To be a social outcast is horrible. We need support as well as patience and kindness. The pain in my head is horrible. No motivation since the beginning, I sleep all the time and have been forgetful since the begining. I have experiencing increased speech problems. I don't want anyone to hear me talk. I get hallucinations (rarely) and anticipate I will die soon. The only way i can write is with the help of a computer.

My sister was just diagnosed with frontotemporal dementia. She is only 49. I have no idea what to expect or how quick this disease progresses. I will most likely he the one taking care of her and just want to know what to expect. If someone can help that would be awesome. I want.to know the nitty gritty, every detail. Please don't hold back, I need to know what I am up against. As it stands at the moment I work in a nursing home and on the memory care unit, no one has FTD so I can't really use anyone as a base..so any info anyone can give me.would be greatly appreciated.
Thank you in advance.
Mary Kate

I fear a loved one is in the early stages of FTD and don’t know what to do? ... my elderly mum is 91 and was diagnosed 8 years ago with early onset Alzheimer’s, although we think she has had for nearly 15 years. She has been in a home for 1.5 and she is fading away slowly every day! ... we do have some funny moments with her too and have to hang on to them. It’s one of the cruelest conditions! ...

I’ve heard FTD called “cancer of the soul”. It’s an incredibly good description of the journey we’ve been on. This horrible disease is not only killing my Mum it is stealing the very essence of who she was, slowly and surely destroying her physically and mentally. The best estimate is that mums battle with this disease began over 10 years ago. She was only diagnosed in December by which time she was virtually bed bound and a mere shadow of the person she used to be. You might ask why it matters so much that it took so long to diagnose? It matters because while she deteriorated day by day, lost all her social connections, her job and her home and distanced her self from family and friends no one knew why. We questioned who she was becoming, we grew frustrated, angry and hurt. We did not understand that the profound changes in her personality were part of a disease process. I fought the apathy, lack of empathy and decline in self care and physical health every step of the way. I blamed her for what she was becoming. This only served to alienate her further. The last 3 years of her life were a war, rather than knowing the reasons why and trying to make the best of the time we had it was a daily struggle to get her to do things she just couldn’t. In the beginning that was something as simple as washing or looking after her self, in the end it was opening her eyes and eating and drinking.
What happened to my red stiletto wearing, funny, feisty, loving, hardworking, independent mum? I finally found out in December , FTD happened. It robbed her of the ability to have real and meaningful relationships with her family and her grandkids, it caused her to retreat into herself and ravaged her body. At least once we knew the reasons we could look for the positives, accept things as they were and just be. We could enjoy the parts of Mum that remained, finding humour even at the worst times. Unfortunately by this time it was too late for Mum to understand what was happening to her.

The scary thing is FTD is one of the most common forms of early onset dementia, it strikes people in their 40’s and 50’s, it’s fatal with a life expectancy of on average 3 and a half years and yet so few people know about it. The sufferers are not met with sympathy or concern because no one knows what’s happening . People with FTD don’t present with memory problems, they suffer behavioural and personality problems and eventually language and physical difficulties. If you or someone you love are unlucky enough to develop FTD it’s very likely it will take a long time to diagnose and finding the appropriate support is impossible, especially in County Durham. I can’t change the last few years, I can’t have that time back and make up for all the times I just didn’t understand but I will do what I can in mums memory to raise awareness of this disease. My mum deserves that.

My wife has dementia early aged 56. At the moment she sleeps a lot, talks to herself a lot, says very unusual things about people and daily life that don't make sense. I dont know if she at a later stage or not and would appreciate any help as to what I must expect. That's now and towards the end so that I have an idea on how to plan ahead. Im ex military and quite frankly this is breaking my heart. Can anyone advise me?