I have learned that caregivers for dementia patients are said to experience the long grief. So far we have been dealing with this diagnosis for four years. At first, the changes came slowly. In the past months, they seemed faster. Now, we may have hit another plateau.

That is what I am experiencing: grief after grief after grief. Each new loss of function is a cause for grief. Last month he had no difficulty identifying the month, if not the day of the week, which may be common in retired people without dementia. Today I had to remind him that it was December.

I confess that I also grieve for myself. I can no longer travel internationally or to the East Coast because Miklos can’t handle changes in time zone. I am limited in the events I can attend at night because I am concerned about leaving him alone. I am limited in what I can plan for my future because I don’t know how long I will be caring for him and living with his limitations.

Today, as his pulmonologist was suggesting a three month follow up, Miklos quipped, “I think I will still be alive then.” But we just don’t know. And I grieve because it is really possible that he won’t make it for three more months. After almost 60 years of marriage, will I know what to do with myself?