If you are in the ALS know, you know it’s ALS Awareness Month. If you are in the Military Caregiver know, May is Military Caregiver Month. So, as a the caregiver to a veteran with ALS apparently May is THE month!
This morning I was able to get a few minutes to myself. I went outside to enjoy coffee and greet the morning. As I took in the silence, my mind kept wandering to the word SIMPLE. This word had my thoughts bouncing all over the place. This is something that happens these days as it often feels like my mind is a pinball machine with the ball my thoughts and the bumpers and flappers the subjects.
When thinking about the word SIMPLE I went to both how life use to be so simple and how supposedly simple things have created complicated outcomes.
A simple weakness in a finger turned out to be ALS.
A simple request for a non-invasive ventilator turned into a congressional request.
A simple cold turned into pnumonia and ultmately the need for a trach.
A simple request to the VA for a hospital bed appropriate for Tom turned into a request that I had to elevate to local VA management and include both our Congressman and our Senator in the request.
A simple UTI turned into sepsis.
A simple trach change turned into 3 days in ICU.
I find it hard to remember when things seemed simple, but I know it happend. I guess if I think hard enough I could come up with examples but that would require me to quiet the thoughts and focus…something my pinball machine mind doesn’t allow these days.
I was also thinking that with simple things turning into complicated events, complicated events are overcome simply by the love I have for my family.
I am simply a military caregiver to my husband with ALS but I hope through awarenss you have learned there is no such thing as simple when it comes to [military] caregiving and ALS.
All my love,
The He’s update: He was released yesterday from the ICU after getting his trach upsized. He is adjusting to his new normal of partial paralysis, trach and unable to speak and eat. He is focusing on his hobby of photography which has led him to upload his artwork to the website Fine Art America . You should check it out and check back often. The amazing part is he is editing the photo’s using only his eyes. Soon he will be taking pictures again using only his eyes. I can’t wait to see the world through Tom’s eyes.