Help Ed, Eddie, (Chuckie) Novine stay at home

Hi there. This is Barb MacDonald, and yes, Ed and I used to be married. For anyone who knew us, that obviously didn't work out well. But, we both share a love for his daughter, and grandchildren, and we have become good friends over the years. Ed has a disease called CBD, or CBS - Corticobasal degeneration, or corticobasal syndrome. This disease causes a buildup of proteins in the brain, which in turn slowly damages the brain, until the person with this disease dies. Ed first started showing symptoms of this problem in 2018. After many many doctors appointments, (that anyone who knows Ed, knows I had to drag him to them) he was finally diagnosed with this disease. The actual cause is unknown, so everyone out there who assumes this is because Ed liked to drink, that assumption is incorrect. We all know he loved his cans, but that is not the cause of this disease, and unfortunately, there is no cure or treatment. Again, anyone who knows Ed, knows he is pretty private about his personal life. Since being diagnosed, Ed has slowly deteriorated. I wanted to post something for him long before now, but he refused, because he didn't want anyone to know what is happening to him. So, since 2018, we have managed to cover everything he needs with help from social services, disability, doctors, home care aides, hospice services, and of course, Ed's mom. It has been a battle and unfortunately, Ed is losing. Ed is at the point where he needs complete care, he cannot do anything for himself, and relies on help that we have in place 24 hours a day, 7 days a week. While he does get help with these services, he does still have to pay some money towards this care, and the money he has for this is going to run out soon. He has an awesome team of people giving him one on one care, everyone doing our best to keep him smiling and comfortable. Again, anyone who knows Ed, knows he is stubborn, stubborn, stubborn. He is fighting hard, and our goal is to keep him at his own home, until he is ready to go. He could really use some help, and he would never ask on his own, so I am asking for him. Please help.