FMLA leave from work…
18 months on hospice…. How lucky we have been with the gift of time. However, it feels not enough…
A few weeks ago Brian woke me up having a seizure in bed. It was around 1am + it felt like there was an earth quake. He had 17 seizures in a five hour time span. With any seizure episode I FEEL there is always some sort of progression of his disease that comes with it…. + now I am seeing that change.
Within the past few weeks Brian has been noticeably eating less food + drinking less (at times). He has shown some confusion while swallowing + chewing. At times he will take a bit of food, hold it in his mouth, + forget to chew - or chew, but not swallow.
I see him leaning or falling completely to his right side in bed.. this shows me that some muscles in the belly and back are not activating. I have fall proofed the left side of the bed with my Thai massage mat. I am not super worried that he will fall out of bed, but its just a precaution.
I also have not gotten an “I love you” from him in three days. Last night I got an “I law”… he’s trying… It’s heartbreaking.
With the eating, his nurse said it wouldn’t be a bad idea to start the conversation about taking a leave from work. With my stay at home job I am allowed to take up to 12 weeks of FMLA (Family Medical Leave Absence) from work. This is all unpaid. But, it is job security in case I feel in alignment to continue working there. I got approved officially for FMLA yesterday. This will start on May 15th. I have 2 days left of working from home (for now).
I am happy that the energy of work will no longer be filling our home in the mornings. I am happy that he won’t heart the typing on the computer, the phone calls, + the dings from alerts. This energy can be truly negative + unwanted…. it’s been hard…
I have always imagined taking time off work to care for Brian (more) at this time. The financial burden has been a struggle. I work 40 hours a week and over the past two years we have lived pretty much pay check to pay check. We don’t have a savings. We are not provided government support for be being his full time carer (because we are married). The idea of taking time off was a dream….
But YOU all have made it a reality. Just over a week + our village has really held us. Between our GoFundUs, Venmo donations, shop sales, messages, shares, thoughts…. we made our goal. This goal will allow me to not worry about making ends meet for the time being. We can keep a roof over a heads, the fridge full, the bills paid…. I am so grateFUL for this gift.
On top of working I care for Brian 24/7. I feed him. I dress him. I bathe him. I aid in going to the bathroom. I help him stand + sit up. I brush his teeth. I put lotion on his skin. I soak his feet + cut his fingernails. I comb his beard + tend to his wounds. He needs 100% care + support….
Over the past 2 years in our death nest + I have felt capable… but now I FEEL ABLE….
I feel able to remain present with Brian with a clear mind, unburdened by financial stress…
I feel able to rest, to slow down, to be filled up by the little moments…
For the longest time I have felt down + lonely but not having my village all in one place, but I FEEL you all. You are all here with us. In our hearts, our home, our thoughts… Your energy is fully present.
Thank you for seeing us. For answering our call for help. Please imagine I am giving you the biggest embrace - heart to heart - soul to soul. You have all truly been there from the start of this journey…. thank you thank you thank you….
