Being a caregiver for an Alzheimer's patient is tough. Even tougher when that person is someone who you love. Few people, unless they are a caregiver, truly understand what it means, what it takes. Others don't see the constant paperwork you have to deal with. They don't see the tears because you hide them – you don't want to cry in front of strangers. They have no idea of the patience it takes. And the strength. It takes so much strength to get through each day.
I have written about it over and over, all of it, but especially about the pain. The pain of seeing my Mom wither before my eyes. The loss of who she was and watching her turn into who she is now. The pain of never knowing what I am going to experience when I go visit. Will she know me? Will she let me visit with her? Will she be sad, confused, frustrated, and cry or will she be happy and want to walk and dance with me? It is a game of chess in which Alzheimer's disease is always one move ahead.
I have come to deal with my new normal as well as anyone could. But one day I received a phone call that changed my life again. A friend wanted to talk. But I noticed that the voice on her message wasn't her normal cheerful, bubbly voice. I called her and after some small talk, she finally got down to business. She described what had been going on with her mom lately. Everything, and I mean everything, sounded familiar. It took me back seven or eight years in my own life. Every one of her stories sounded like an experience I had with my mom, and my heart broke.
I did my best to be as supportive as possible. I told her what I knew. I suggested steps to take, and described what my sister and I had done for our mother. I commiserated, and I told her to call me whenever she needed me before I hung up the phone. And then I cried. I cried for my friend. I cried for her mom. I cried for her family. I know what they face - the struggles, the decisions, the heartbreak. No one wants that for anyone, and especially for a close friend.
In my head, I was now ok with, had come to grips with, where I was with my mom's disease. I had accepted it and the life we had, but somehow I still thought that it shouldn't happen to others. The immensity of the disease rattled me once again. My friend's mother was now suffering from the disease. Not a grandparent, which seemed to be the norm. I was accustomed to hearing about parents, including my own dad, taking trips, going to concerts, watching the grandkids, but not suffering from Alzheimer's.
My journey with my friends and Alzheimer's was not over. I had another friend out west whose mother-in-law was suffering from Alzheimer's. Her mother-in-law had been diagnosed a while after my mom had. My friend and I had sent many texts back in forth. We shared good days and bad, asked questions and offered support. And then it happened. Her mother-in-law passed away. Before my mom.
How could all this be happening? The reality of the situation, my situation, my friends situations, took a toll. I wasn't ready for my friend's parents to die. I wasn't ready for their parents to be diagnosed with dementia and Alzheimer's and I certainly was not and am not ready for my parents to die. I am not sure, no matter the circumstances, that anyone is really ready for a loved one to die. Sometimes we come to accept that it is inevitable, but I was not at that point. I still am not.
I cannot imagine my life without my parents. I don't want to imagine life without them, but unfortunately it is becoming more a reality each day, especially with my mom.
To be continued...