Caregivers have a tough job. It can be thankless and ridden with guilt. It is a job where you have to constantly create balance. A balance between the job of taking care of someone, that someone being a person that you love, and living the rest of your life, your life outside of Alzheimer's.
In the past, I felt horrible anxiety about being a caretaker for Mom all the time. In the earlier stages of Alzheimer's, I worried about her getting lost or hurt. I worried about someone taking advantage of her. I worried about messing up something in her life, a life that I was now responsible for. Would I mess up her bills? Was I truly aware of the toll the disease was taking on her? Had she progressed further in the disease than I realized?
Looking back, I can answer these questions. Yes, she usually was further along in the disease than I realized at the time. Yes, I messed up her bills more than once. Taking care of my own household's bills as well as Mom's was sometimes too much, so I made mistakes. Fortunately, no one took advantage of her that I’m aware of. And yes, she did get lost sometimes, but she never was hurt, thank goodness.
During the earlier stages of her disease, I was constantly worried that I was not visiting Mom enough. When she was living alone or in assisted living, she was still aware enough to know when I was visiting. Often I took her shopping at Target or out to have a simple lunch. Sometimes we walked around the grounds of the assisted living facility, other times we would sit and talk or look through pictures. I treasured these times, but I can still remember the pressure I put on myself to go see her. The anxiety that I had if I hadn't been there in a few days. It was immense. Balancing my life as a wife and mother of two as well as being a caretaker to my Mom was, at times, more than I thought I could take. I cried a lot, mostly when no one was around. I felt like no one understood. It sometimes made me physically ill.
Soon came the stage when she didn't know when I had last been there. So that helped alleviate the anxiety, right? No. At the beginning of this stage, she would cry to the nurses in assisted living saying that she missed me and wondered why I hadn't come to see her. When my sister Morgan would call her, Mom would tell her she hadn't seen me in six months even though I had been to see her the day before. So I felt even more pressure. I was visiting and Mom didn't even remember. Worst of all was that she thought I had abandoned her. Mom was so sad because she thought I was mad at her or I didn't care about her anymore.
Now we are in the severe stages of Alzheimer's disease. I try and visit once or twice a week, but Mom has no idea when I was last there. Some would say that she doesn't even know me anymore, but I beg to differ. She may not have known that I was there two days ago, but most of the time when I go to visit Mom, she is able to let me know, in her own way, that she knows me. I give her my standard greeting of, “Hi Mom! It's me, Molly, your daughter.” Most days her face lights up and she says, “Hey hon!” She no longer knows my name or the meaning behind the word daughter, but I believe she knows that I am someone who loves her. The “hon” that I get is enough. It tells me she knows that I am not a random visitor or a nurse. She feels a loving connection to me.
I am not sure what would happen if I never went to see her again. Just writing those words breaks my heart, as I could never do that, but I know that is how some people handle the loss of the person they once knew. Would she forget me altogether? That is a question that is meant to be left unanswered. I like seeing Mom. I love the way she lays her head on my shoulder when I put my arm around her. I
The other day I was thinking about the two weeks that I missed seeing Mom. How in the past I would have made myself sick with guilt because it had been so long since I saw her. This time I didn't feel this way. I guess there were other things that were more pressing at the time. Some might say that I could have found a way and they are probably right. But sometimes in life you have to let some things go to keep yourself well. Unfortunately, this time, visiting my mom was what I had to let go of. Luckily, when I did go see her, she remembered me. Her face lit up and I got a big smile and a “Hey hon!” And when I had to go, as I hugged her and told her that I loved her and that I had to go, she told me not to go far. This was her way of telling me to come back soon. And I will.
Think what you might, but that small break from my mom was something I needed. A brief step away so that I can return to being the best caretaker and daughter that I can be for her. No guilt this time, but refreshed instead. Because sometimes a break is just what we need. And that is ok.