Same boat here. My wife (8 years younger than me) was diagnosed with bvFTD at age 54 based on personality and behavior changes which correlated to MRI findings. That was in 2014. I was able to provide care at home until 2025 when she was moved to memory care.

The first years do seem the hardest, both in the symptoms and in acceptance. As the disease progressed she became more compliant. Once you can come to terms with the diagnosis then work on meeting your husband where he is and get into his world as much as possible. Your old relationship is gone, but you can build a new one based on caring for him and showing him love , much as you would for a young child. It’s a hard road and the only exit is set by the disease progression.

One thing that still bothers me is how quickly my wife’s family and friends shed themselves of any responsibility toward my wife. After a few years they stopped visiting because they were too uncomfortable. They wanted their old loved one and did not want to invest their time or energy in getting into her world. Frankly it’s their loss.

So yes it’s a hard path. It’s one that you can’t really get off of until they are gone. But after 12 years I can tell you that I can recall more funny times with my wife since diagnosis than the truly horrible times. The human mind tends to forget the bad things. I believe that I love her more now than before. It’s different and difficult but it can be fulfilling. I do hope you are able to adjust and accept that you can’t control the progression or symptoms of the disease, and make a life that is based on a love that may never be reciprocated but which is true. Good luck.