When my husband, Professor J, was first diagnosed with primary progressive aphasia, I had never heard of the disease. I read all the material that was given to us at that time and still felt extremely confused and ignorant of the debilitating journey that lay ahead. It wasn’t until his sister who told us about a research project that was being conducted by the University of California, San Francisco that I felt a sense of hope. We made arrangements immediately to set up an appointment with Dr. Bruce Miller and his team to test him and see what was this disease and if there was any cure for it. After several days of testing and interviews, it was concluded that he had semantic dementia. Again, I had no clue what this meant and to tell you the truth, I couldn’t face the truth. The word dementia I knew, and when I heard that word I went into denial phase not believing this could happen to my intelligent, witty, hardworking and loving husband.

It is a sad disease as you watch the person you love so much disappear in front of your eyes. Each day is a challenge and brings different situations as this disease progresses. On one day he seems fine and I think, maybe, just maybe, he will be all right and then the next day he cannot express himself, seems confused and acts in a way that just isn’t him. Someone told me “J is no longer there, the J you knew is gone”. I cannot express how hard those words were for me to hear. But I knew this was true, I just couldn’t accept it. As I saw him go through depression, anger, confusion and behaving inappropriately I realized I had to accept it and deal with the situation. It wasn’t easy and is still at times, difficult but what choice is there? He was a giver, a caretaker, treated me like a queen and now the roles have reversed and I need to be the giver, the caretaker and treat him with the respect and dignity he deserves.

There was a period of time where I couldn’t stop crying. How am I going to get through this? My answer came from the comfort and support I found with family and friends. You also discover how some people will disappear from your life because they cannot deal with the disease. Life as you once knew it changes. We have a seventeen year old son and he has lost his father in a time of his life he most needed him. His daughters while older and on their own, are also in varying stages of coping with the continuing loss of their father. You adjust and accept that things will continue to change. You take care of the business at hand, power of attorney, financial arrangements, health provider provisions and wills. All of which I wouldn’t have thought about had it not been for my sister-in-law who took charge of making sure I didn’t wait too long. We did it at a time when he still was able to understand what was going on. I cannot emphasize the importance of taking care of these matters.

I miss his humor. His wit came from playing off on words. This disease takes the words and with that went his humor. I miss our long conversations and planning our retirement. He had to retire earlier than he ever expected. The day he signed his retirement papers from the University was truly a depressing day for him. I miss the “old J” but I am learning to accept and work with the “new J”.

We are lucky to have found the UCSF Memory and Aging Center. The treatment and support we receive from them is truly amazing. They are kind, understanding and treat him as a human being not just a research project. They also help the entire family learn and understand this illness and work with us very closely to answer any questions or concerns that constantly come up. They are always there to assist us.

~ Luz