His choice…

To me, these pills represented …. more time.

… but, what if more time… is not what he wants.

This week Brian made the choice to no longer take his medication. Ever since I have known him he had not wanted to take it. If you know Brian personally, you know that he can be stubborn + once he makes his mind up about something — it is locked in.

Before he made this decision he was taking a really long time to take his pills. He would hold them in his hand for 30-45 minutes. I would ask if he needed help or if it was painful to swallow. He would look up at me a bit confused and say “I don’t know.” A few days before he made the decision to not take them he would hold them and say “no”, shaking his head. I would sit with him patiently hoping he would take his pills, but he’d put the pills back down. I was persistent saying that these pills are really important to take. They help aid in slowing down the progression of his disease + prevent him from having seizures. I would tell him that his seizure last year was really scary + that these pills to me represented …. more time.

I was really hoping that me describing them as MORE TIME would convince him… but as of Tuesday of this past week it has been a firm no on the medicine. I really had to sit with this. I had to sit with him not wanting to take his pills + really soak it in that this is HIS CHOICE. The decision to stop taking medication is his choice. This is his end of life journey. I needed to honor this decision. I need to respect his decision. This is his journey, I am just walking alongside him….

Wednesday we had his nurse come by. We let her know about his decision + we all discussed what would most likely happen if he did stop taking his meds. He was alert, listened, + acknowledged the risks. Our nurse consulted with the physician + they did recommend doing a taper off of the seizure medication. She let us know that seizures are not painful, they may decrease his quality of life, + the main concern was if he was standing while having a seizure. Brian was still very adamant about not taking any more meds. Our nurse was supportive, letting Brian know that this is his choice, + honored that. I am super thankful that she is not pushy, she knows that this is his journey + she has always been on his side + his advocate.

He had missed 6 doses + by Friday morning he began to have a seizure. He had about 5-7 seizures that morning. Each time I asked if he wanted to take his medicine + the answer was no. He is the strongest man I know. Following the seizures he began to vomit throughout the day. And as of right now, he is resting. Sleep is medicine +.I hope he gets as much sleep as he needs this weekend.

So what does this mean moving forward, no idea. I am not sure if our time together will burn our faster. It is unclear if this will decrease his quality of life. Will he walk less, move less, speak less? Will seizures become a constant? Will we make it to 35 + celebrate our birthdays together in September? I fucking hope so. I have always wished for more time — I feel we deserve more time.

But, what if more time… is not what he wants. Sitting with that now….. honoring. Breathing into this. This is his choice….