I am working very hard to deal with disappointment. I had all these great expectations for this year and it seems that nothing is working out the way it’s supposed to. I hope that one day I can look back on this and be grateful for the time I have with you but right now it is so frustrating and so disappointing.
I don’t understand why this is happening. I don’t understand why you don’t understand that this isn’t normal. It is so difficult to explain your behaviour to strangers when we are out in public. It is even more difficult to explain to my friends why you don’t work but you aren’t retired. Or why you can’t be left alone. And why mom doesn’t work because she is now your full time caretaker.
It doesn’t make sense. It isn’t fair. Dementia has such a stigma and I wish I didn’t care how our family is perceived to other people but it’s so hard when everyone else around me gets to experience growing up and becoming friends with their parents as an adult but I don’t. I will never know what it’s like. Dementia has forced me to become the adult and the decision maker in our relationship.
I know that life is unfair and it could always be worse but I want you to know that it doesn’t make this suck any less. I know that you aren’t supposed to spend life thinking about the “what ifs” but I would be lying if I said I never think about how drastically different our lives would be if you never got sick.
I imagine how incredible it would be to grow up with you and how much you would teach me. I think about all the things I would ask you, all the things I was too young to want to know before you were diagnosed. I think about all the experiences I would share with you.
I know that our relationship is no longer a typical father daughter bond, but it is changing into that of a caretaker and a patient. It is heartbreaking to see you like this, and it feels like all of the expectations I have are constantly being challenged. I am working really hard on removing my expectations with you so I can minimize the disappointment. I know that it will take time but I hope that one day I can look back and appreciate our relationship at face value.