Sometimes I get the comments, “I don't know how you do what you do.”, or “Do you ever wish it would just be done so she isn't suffering?” And my answers are always very simple.
I don't know how I wouldn't do it. She is my mom. I love her. And no, I don't wish she would die.
I know that the disease is hard. Despite the fact that Alzheimer's has become an epidemic, people don't really understand what Alzheimer's disease does to a person, except those of us who deal with it every day. People also don't understand what it is like for the caregivers. No matter how you explain it, it is one of those things that, like the old saying goes, “until you walk a mile in their shoes” you don't get it unless you live it.
Despite all of that, despite Mom's lost skills, her inability to go to lunch with me or not being able to play with my children, I will take her just as she is. Because she is still here.
I often think what it will be like once Mom dies, and it deeply saddens me. I really can’t even complete the thought because it will be so devastating when it happens. My mother, with her disease and her decline, has become a large part of me and my existence. Being her caretaker is part of my identity now and when she is gone a part of me will be gone, too.
Each day, each week, the way that we communicate changes. Sometimes I get a huge burst of the “real” mom - she laughs and sings, she reaches out to hold my hand or places her head on my shoulder. Other times I get almost nothing – she mumbles a few words, she won't eat, she is so tired that she won't open her eyes.
When you take a trip to the beach or a hike in the mountains, the elements of nature become a part of you. You soak in the sun, putting color in your cheeks, the cold nips at your ears, the wind blows through your hair, and even the smallest grain of sand helps massage your feet as you walk barefoot along the beach.
Each little part of my mom has become a part of me - the way her face lights up as she hears my voice, the warmth of her now thin and delicate hands in mine, her need to sing every time she hears music, and even the way the adjusts herself in her wheelchair. All of these things make her who she is, but they also shape the woman that I am.
So no, I don't want it to end. I want to keep soaking in everything about her while I can. For one day, very soon, I won't get to see her smile, touch her soft cheeks and sing with her. One day, when I say, “I love you Mom. I'll come back and see you in a few days,” that day won't come.