fall family update 2023
It has been three years since the accident….
We have been on hospice for two years….
My 24 week (unpaid) leave from work was scheduled to end on 10/30/2023. After speaking with our nurse and our family we have made a mutual decision for me to officially resign and cut that cord. It is in Brian’s best interest for me to not go back to working from home as he needs 24/7 supervision + constant care.
The work I was doing from home was customer service and the energy of the work was not an ideal energy we want in our death nest.
This is a HUGE deal for me, and as for most of us security + financial stability is desired. But,…. since taking my leave 23 weeks ago I have really stepped back into my soul skin. Being in the death portal + feeling death personally it truly wakes you up to what is important in life. It reminds you that you should not settle for anything less than you deserve. I am in control of where my energy goes + flows + right now that is needed in our family, for Brian.
During this vulernable transitional time I am focusing on a whole set of other skills: slowing down, staying open, getting curious, and realigning myself with what I am really here to do.
What does this mean for our financial security? I am not sure. I am choosing to trust. I FEEL we will be held. But it is also super scary to lean further into the unknown. I am able to stretch our donations until the end of the holiday season. For that, I am forever grateful for our village. You all have provided such security for us.
I only desire to do work that is in alignment with my soul. I am currently working on a book which will be published in Spring 2024. I am updating my online shop as well as have some special pieces at Temple Yoga in Reno, NV.
Later down the road I will be focusing on helping others in the Death Portal as an End of Life Doula and hopes of one day opening a Death Center providing information, care, and a safe space for others to lean into grief + death as well.
Since I first took my leave of absence from work there has been a bit of progression of Brian’s disease. His speech is gone. I no longer hear the yes’s, the no’s, or the I love you’s. He went from being able to sip from a straw to only using a squeezable pouch for liquids. There has been a loss of weight. He is barely getting 1000 calories in his belly a day. There is loss of strength. Its is getting harder for him to help me get him from the bed to the wheel chair. His core strength is decreasing as well making it difficult for him to sit up in bed or the shower without support or bolstering. At times he does get pressure sores on his ears. Pressure sores are caused by super sensitive skin from loss of nutrition. He has stopped smoking joints + vaping. I noticed he was rubbing the vape pen on his teeth and gums instead of inhaling so I replaced that with a rubber straw. It still gives him the satisfaction to chew on. I felt this was a safer option for him and it seems to be working. He does get fixated on the straw or whatever he is holding. His nurse says that the fixation can come from only being able to focus on something small and singular.
The progression of his disease has been very slow + just because it is a slow progression doesn’t mean that it is not happening. I do share a lot of smiles on social media but there are more moments of stillness, sleeping, confusion, + grief that only we see.
I am so grateful for all the moments we have been blessed with. The three years we got after the accident. The two years of being on hospice. One of the nicest things our nurse said to me one time was he wouldn’t still be here if it wasn’t for the love you show him every day. And that hits home. Love is the answer.
So here’s to hoping we create more memories, presence, and trust.
Thank you for seeing us, witnessing out journey, + sending love.
XO, Ray + Brian
