It is common for people to call Alzheimer’s disease, “The Long Goodbye.” Patients wrestle with this illness for decades and therefore it is a long goodbye for the family and friends of the person with dementia. We slowly see them slip away. We say goodbye to small parts of them at first, their ability to remember a new phone number, their quick answers to questions. Then we start to say goodbye to more and more. We say goodbye to the hobbies we used to do together, we say goodbye to their identity, we say goodbye to our mother or father who is looking at us but has no idea who we are.
Every day we live with how hard it is to watch someone go through this and we experience how difficult it is to care for them. Sometimes it feels like days last forever. Nancy Mace and Peter Rabins wrote the book The 36 Hour Day to illustrate just how long the days may seem caring for a person with dementia. It is a long goodbye.
And yet, sometimes it seems much too fast. I look over at Mom and notice that she no longer looks like the mother I know. She is much smaller, the twinkle in her eye is gone, sometimes she forgets how to write, and sometimes I have to cut her food for her. In those moments I wonder how this all happened so fast. In my mind and memories I still see Mom cooking Thanksgiving dinner for 30 people. Getting every single dish out on time, perfectly cooked, steaming hot. Beautifully golden mashed sweet potatoes without a lump in sight, the marshmallows on top perfectly browned and crisp. I see her in her blue and white apron with the red trim, creating the most perfect pies in her immaculately clean kitchen. She is not the same anymore and sometimes it seems like it happened way too fast.
What saddens me even more though is something I have not heard mentioned when people talk about the long goodbye of Alzheimer’s. We always talk about the long goodbye for the family and friends, but what about for the patient? What is it like to say goodbye to yourself? To who you are and everything you have done? To say goodbye to your family and friends? Years or decades is a long time for them to not only say goodbye to themselves, but to everyone around them.
My family tries as best it can to live in the moment and enjoy what we have, but there are times when I get a sense of just how sad and scary this disease is for everyone involved.
It is a long goodbye which comes much too quickly for us all.