The last time my father stood on the pulpit at church was just under 6 years ago. It was my wedding day. If I had known that it would be the last time, I would have paid less attention to Matt's
unfortunate haircut and more attention to his words.
I can't believe that it's been 6 years already that we have known something wasn't right. Back then my dad was forgetting things, repeating questions and losing track... We dismissed Alzheimer's. Probably because we wanted to. The symptoms weren't quite right and my dad was a workaholic professor; he was likely just really stressed. But a sabbatical turned into an unofficial retirement and we searched to come up with some answers to our questions. And then, when we finally got some answers, they were everything you never wanted to hear. It turns out, my father had been struggling with a slow-moving form of Alzheimer's for years. When we had a family meeting after the diagnosis, my dad himself told us what the doctor had said and what steps we were going to take as a family. It was a good little speech, except for the part where he actually forgot to tell us he had Alzheimer's. By this time, we already knew but still... a moment of irony.
I don't think I knew a lot about Alzheimer's until it became a part of my everyday life. I mean, it makes you, like, forget stuff, right? Oh ya, and it's the disease the girl on The Notebook had... that Ryan Gosling, what a hottie...
It wasn't until I saw what Alzheimer's was doing to my father's life that I realized that the 'forgetting stuff' is the easiest part to deal with... People always ask me if my dad still knows who I am... He does. One time he referred to me as his friend, not his daughter and it scared the crap out of me. But while the forgetting is awful but it is the loss of identity that hurts the most. My dad lost his identity as husband, father and professor. He can't work. He can't drive. He can't find the right Bible text in church. That is why I think thrifting with my dad was such a good activity for a time. My dad could spot quality and beauty and when he found something, he got that rush of accomplishment back; even if it was just for a little while. And if he found nothing, he would still find as much joy in me finding something. This would explain some purchases that were not exactly to my taste. I didn't care though, I paid a few dollars to give my dad some moments of happiness...
On the one hand we have been blessed that the advance of the disease has been slow. I've learned the lessons of appreciating the moments, of spending time and of saying I love you. My dad and I have always had a great relationship and our family, spread across two continents, has been blessed with some amazing times together. On the other hand, our family has been carrying the weight of the disease for a long time. It feels heavy. Especially right now. Right now, my dad is so limited in what can hold his interest and what he can do, that he spends a lot of his days in boredom and frustration. Yet the disease is not so far advanced that he is not aware of his own limitations. He might not be aware that he has Alzheimer's but he is aware of every little thing he can no longer do. That awareness is painful. This restless, depressed man is not someone I recognize. My dad is smart, funny and caring. I have to remind myself daily to separate the disease from the man. There are moments I spend with my father and then, there are moments I spend with the disease. Lately, I have spent more and more time with the disease.
I can't take him thrifting like I used to. Sometimes it's a good day and we can still thrift for about 20 minutes at a time, often I don't even try. I talk about his life growing up in Holland or I take him out for ice cream and treats. There are times when nothing really works and I am near tears, trying to entertain a broken man. Selfishly, I mourn for myself. I used to always be able to cheer him up. I could breeze through the door with loud comments and stupid jokes and take my dad out on some crazy adventures (the further away the better because long drives equals more downtime for my mom at home), lifting his spirits every time. I have to work a lot harder for a smile or a conversation now, and I feel like I am failing in what I used to excel at. Once again, I need to learn to separate the disease from the man and not take it as a personal failure when I can't reach him. I am just not ready to stop being his little girl. Sometimes, my dad can't listen to more than 3 seconds of my conversations; his eyes lose mine and recede into sadness so quickly. I want to grab my dad then, grab him by the front of his shirt and hold him here. Here with me. To listen to me. To love me. To love my future children. And when I drop him off back at home, I am exhausted. Yet, my exhaustion over a couple hours is nothing compared to what my mom goes through every day.
I have nothing but respect and admiration for my mother. She is taking care of her husband, a husband who often turns his frustrations on her, and she is doing it with grace, dignity and a smile on her face. My mom who has done so much research and work to develop the best treatment plans for my father (with doctors' supervision, of course). My mom who used to painstakingly insert glaring mistakes into my dad's old writings every night, so he could edit his own work the next day and so, feel a sense of contribution. My mom who, laughs loudly to try and fill the emptiness in the air. When I break down to my mom in helplessness (which is, I might add, unfair, as she shouldn't shoulder my grief), she reminds me to focus on my relationship with my husband. She tells me of how she promised to be with my father in good times and bad times and while they had a lot of good times, she is now going through the bad time. It is painful to know that my mom's life will be so much easier when my father's awareness reaches a lower point. My father losing his awareness, will give my mother some freedom... That is brutal fact to acknowledge.
I don't do research on Alzheimer's. I know too much already. It is a heartbreaking disease. I know every person affected is a different face of the disease. I also know that the journey we are on will continue to be a very long and difficult one. When I dare to think of future obstacles, I feel sick to my stomach. I don't want to focus on that, I would rather focus on the good moments we still have now, even if they are less frequent. I take lots of pictures of the good times and message them to the family in Holland. These pictures are like an Instagram feed... full of food, smiles and scenery. In the pictures at least, we are happy.
Last week I took my dad to a local food truck festival, even tweeting about it excitedly in advance. Foolish. It was too hot, too crowded and it didn't work out at all. I want to forget that. But I don't want to forget the moment that day when my dad asked me if we needed to stop and help the rough looking (yes, I judged that in one glance, my father did not...) guy struggling to fix his bike tire. That's my dad; helpful, polite and patient. He is always ready to help, even when we need so much help ourselves.
I don't really know why I am letting the flood gates on this open up on my blog... I talked about it a bit when he
went missing last year, but for the rest, I try to keep the complicated aspects of my personal life out of the blog. It's easier that way. But lately I can't seem to write. Well, I can but it takes me forever and the joy is gone. I feel it every time I post. It's hard to write funny, light posts when your heart is heavy. I don't think anyone reads this blog and thinks my days consist of dress-up and cat snuggles, but lately writing about that stuff has felt false. I just needed to get some of this out of my head.
I've always prayed for a cure to Alzheimer's. A cure to help my family and all those other families who often suffer in silence. Lately though, I've just been praying for strength.
