When we were first on this journey, my husband needed little help from me but as we reach the ten-year mark, that has changed. I am his transportation, I often help with dressing, and have taken over many of his day to day chores around the house. How and when did this all happen? If only I had kept a diary and jotted these changes when they first occurred, I would be able to answer those questions.

Having a tool that allows me to track the progression of his symptoms would be so useful. I could actually speak with his neurologist about changes that have taken place since we last met. We would have a basis to talk about his activities of daily living and the help he needs currently. If I could look at my calendar or diary and see where we actually were six months ago and review notes about changes that had taken place, I could share much more about what I actually see happening.

We recently decided to update our estate plans and the attorney mentioned that there may be assistance available for my husband as his disease progresses but we will need to meet certain criteria. In order to know whether we qualify for additional help, we need documentation of when the help was first needed and how it impacts our lives. We can look back and make educated guesses, but it would be much better if someone had told us this earlier so I could have been tracking the changes all along.

Finally, as this disease progresses, we will see changes in capacity for both of us. It would be nice to be able to identify when and where the changes are taking place so we can better understand that it is the illness that is causing them. If we note the changes and discuss them, we can face them together and I will not feel like I am alone in facing the challenges. If we track where we are honestly, then we can monitor the advancement of symptoms and be ready to ask for help when we truly need it.