No Escape Exit
Thursday, February 7, 2013 9:05 AM
So, if I were ever trapped in a burning building I find comfort in knowing I can look for the exit sign and know that I can get out. Almost all buildings have not only an exit but an emergency exit along with a posted escape route. You see these in schools, businesses, county complexes, restaurants, everywhere. They are required. There must be an escape exit in the event of an emergency. These must be well lit and visible so that they can be easily found and safety can be accessed.
Imagine though that you were somewhere without this option. No lighted exit signs, no exit routes telling the way. Even in the comfort of your own home I believe in the back of your mind you have a pre-determined route you would escape if in danger. Imagine though that you are somewhere completely unfamiliar with no obvious exits. Even if it was a comfortable and inviting environment, wouldn’t you feel a bit uneasy? Would you panic? Would you remain calm? Would you feel trapped? Would you reason that every place has an exit? Would your heart race? Would you fill you time and your mind with other, more pleasant thoughts? How would you respond?
Well, I find myself in a place such as this each, and everyday of my life, as I care for my mother who has Alzheimer‘s disease. I have to decide each day if I am going to panic or remain calm. If I am going to be irritated or patient. I have to choose to fill my time and thoughts with positives so that my heart doesn’t break all day long. I have to remind myself when I am feeling trapped and I can’t find and exit that I am also 110% sure that is how my mom feels too. With dementia being the major symptom of Alzheimer’s she doesn’t know where she is, what day it is, or really who is with her. She can’t communicate how she feels either, but I can sense or know how she is feeling by her body language and through her soul. I have to remind myself why I am here without an escape exit. For her.
The Alzheimer’s Association has asked me to be an Ambassador to Steven Horsford to further the fight against Alzheimer’s disease. I am busy as it is trying to raise 4 kids, be a good wife, and take care of my mom. I have help each day though which frees up some of my time. I find myself spending time on advocacy anyhow, so I had to say yes. I wasn’t going to. I feel honored. I feel scared. I feel like I have no idea what I am doing. However, I said yes to the position, because it comes down to the fact that I feel like that is what I am suppose to be doing. For her.
However, I spent this morning, through a lot of tears and heartache, coming to the realization that I went from denial in 2007-08 straight to escapism since my mom was diagnosed. You see, with Alzheimer’s, there is not escape exit. No way to even attempt to get out. I have poured my time, efforts, thoughts, money, resources, skills, and really all of me into doing something, anything to not face that reality. Don’t get me wrong. I still go through all the motions and I full well know what I am facing. I understand that Alzheimer’s will kill my mom. I see that with such a healthy, young body that I will most definitely see her to the end of this horrid disease. I pray continually all day long. Conversations with God. I pray for a miracle. I pray for a cure. I pray that she continues smiling all her days at least once each day. I pray, sometimes, that something will come silently and painlessly take her in the night (a lot of guilt comes when that one enters my mind). I pray for strength. I pray for doctors, researchers, those living with this disease and their caregivers. I pray that I use my “escape exits” just enough to make a difference but not so much that I am lost.
I say those prayers because I see with each passing day that her brain is shutting down ever so slightly a little more and a little more each day. One day she won’t be able to walk as well until she eventually stops walking all together. Eating and drinking have already become issues as far as getting her to remember to eat and drink. But one day her brain won’t remember how to swallow and/or breathe and she will be gone. Will this happen quickly and painlessly. NO. I understand that she is slipping away a little more each day and that in the end I must face all that she will go through. I must be the one to endure what is to come and I have to be strong. I understand I can do nothing to help her slow or stop this disease. I full well understand that there is little I can do for her besides be her voice and be strong. So, I find any escape exit I can at any moment I can and I always take it.
Even though I can’t stop or slow this disease, I can care for my mom. I can love my mom. I can show her dignity and respect for the rest of her days. I can be the one, and I am the one, who provides all her basic needs and brings a smile to her face every day at least once. If I am not the one doing the actual tasks I make sure someone is here to do them. I buy all her food, prepare her meals, make sure she is eating, help her dress and undress, help her brush her teeth, shower, wash and comb her hair, clean her up when she has an accident in her pants (every time she goes), listens to her yell at me for doing so, avoid her hands when she wants to hit me. I am the one.
Yet, I find my self diving into all these extra tasks also. Making a video then showing the video. Talks. Presentations. Now an ambassadorship. What next? Am I doing good? Well, I believe so, but it dawned on me today that these are all escape exits for me. I try to escape mentally, emotionally, and sometimes physically as often as I can. Do you have any idea how hard it is to sit idly by and watch your mom just slowly fade away? So, I don’t. I do something. Will it help her? No. Will it help someone else? Maybe. Will it help me? I don’t know. Maybe if I am honest with myself and everyone else.
So, here it is. I understand there is no escape exit from Alzheimer’s so when you see me doing presentations, getting petitions signed, out with my husband, walking, creating websites and blogs, working out extra hard at the gym, at my kids events, posting on Facebook, attending support meetings, putting my family out there for the world to see in a video, jump roping, participating in conference calls, or sitting at the local Sweet Corner coffee shop practically in my pajamas, hair barely combed, no make up on, and typing away on my computer just know that I found the escape exit for that day. I can’t sit idly by and watch my mom slowly die. I must do something. So, I am.