Friday, September 19, 2014

Hero.

As some of you know, I have been helping with caring for my Grandma for the past several months. My Grandma was diagnosed with ALS (also called Lou Gehrig's Disease) almost four years ago. ALS is a fast-progressing, and ultimately terminal illness that attacks the nerves in the brain and spinal cord. When the nerve endings begin to die off, the muscles in the affected person's body begin to atrophy until they eventually become completely paralyzed. In the early stages of the disease, a person affected by ALS experiences muscle weakness, especially in the arms, legs, and throat. The muscle weakness in the throat causes difficulty swallowing, speaking, eating, and even breathing.

ALS is an awful, ugly disease.

My Grandma has been on a feeding tube for almost three years now because she can't swallow anymore. She has been faithfully feeding herself five times a day, a process that takes about a half hour each time. Without the ability to swallow, she is also unable to speak, so she uses an iPad with text-to-speech technology to communicate with others. She receives Botox injections in her salivary glands every three to six months to help with excess saliva, but she still needs a tissue box and some wash cloths close by at all times to wipe up any excess saliva. She also has a suction tube that gets rid of the mucus that would normally just coat the inside of her throat if she still had the ability to swallow. Instead, it gets caught in the back of her throat, cutting off her airway until she can manage to clear her throat, which is, no doubt, a painful and scary process. She uses a nebulizer four times a day to help keep her lungs open and clear so she can breathe more easily. She also uses two types of eye drops and countless other medications, vitamins, and supplements to help slow the progression of symptoms.

Several weeks ago, I had to take my Grandma to the emergency room because she was feeling increasingly weak and we weren't sure what was causing it. After an exhausting 36 hour hospital stay, they determined that there was no infection or any new illness, but that it was just a progression of the ALS. Since that time, she has spent most of her days in bed. She really only gets up for necessities: feedings, nebulizer treatments, and bathroom breaks.

Another symptom of ALS is depression, which has just recently been affecting my Grandma. She was living mostly independently, other than visits from home health aides in the morning and evening to help her when she has the least amount of energy, visits from me three (0r more) times a week in the afternoon to help her around the house and with running errands, and sporadic visits from her children and grandchildren. The loneliness she must feel lying in bed all day, unable to sleep because of the activating medications she is on and the need to constantly get up to use her suction, go to the bathroom, or feed herself and take her medications, is unimaginable. 

She was recently moved to a nursing home (the same one where her husband, my Grandpa, is receiving care). The nursing staff there quickly determined that it was time to transition her into hospice care. We don't know how long she has left, as it is always difficult to tell with ALS; it could be days or it could be weeks. All we know is that she is very anxious when she is awake for fear of choking, and she is very tired most of the time.

To say her life over the past four years since her initial diagnosis has been incredibly difficult would be an understatement. I can't even imagine what it's like to live with an illness like that. However, her strength and courage shine through every single day. And I am so blessed by her words of wisdom and witty grins and comments in the face of an unending battle. I think we've been good for each other. I have been able to help her stay mostly independent for as long as possible and she has helped bring me back to life. I've learned from her that life isn't always easy, but there are always things we can be grateful for. She has taught me that family is meant to be there through thick and thin, when we are sick and when we are healthy, when we are filled with joy and when we are inexplicably sad.

My Grandma faces an illness, which will eventually take her home to Jesus, with unfathomable strength and dignity. She rarely complains and is grateful for each new day she is given, even though each day is filled with pain. And because of this, my Grandma is my hero.