a year later …fall 2024
I am sitting on the floor besides the couch that Brian is laying on. He had a seizure this morning and will most likely sleep through the day, resting. It is a super moon today and I find that he typically experiences seizures around a full or new moon.
Last month we celebrated our 37th birthdays. In Feb. 2020 his doctors gave him weeks to months. It’s a miracle of love that we were able to journey through four more trips around the sun together. This year, for the first time ever, I decided to plan a picnic birthday gathering with our closest friends that live in Reno. I don’t typically like to plan anything these days as we are day to day kind of people. We never know when his seizures will happen or how we will feel but our birthday week ran smoothly. It was really nice.
As I think about where we were a year ago I think of him eating more, smiling more, sitting up mostly on his own. I remember his eyes lighting up more when with others. We were getting out more because he was enjoying it more. Now, I feel he is content on staying home or close to home. The moment I move him into the sun his eyes gently closes and he falls asleep. It brings me so much joy knowing how safe and comfortable he is.
We moved into our third year on hospice. We are lucky to have the same loving nurse we had at the start. She comes twice a week. I asked her a few weeks ago if she noticed any changes in his alertness. We aren’t sure what he takes in mentally. I imagine he mostly understands what I say to him. His nurse asked if he still looks for me when I leave the room, and I said yes. She said that’s a good sign. And then I realized that there will most likely come a day when he does stop looking for me when I leave the room. I visualize him with his eyes open…. in more of a vegetative state….. we aren’t there yet but I feel it will be a reality later on…. maybe…
We now have an oxygen machine in our bedroom. There is a worry of his oxygen being low. I use a fingertip pulse oximeter to measure his oxygen levels. We want his oxygen to be in the 90s, like an A. Sometimes it will drop below that and that is when the oxygen machine comes in handy and make him more comfortable.
Brians swallowing is one thing I stress about daily. There is nothing more than I want than for him to swallow, be hydrated, and be nourished. He is strictly on a spoon fed, blended, and liquid diet. We use a thickening agent to thicken up the liquids to help him swallow. Sometimes he forgets that there is food or drink in his mouth and inhale, this is aspirating. Aspiration can lead to the liquid going into his lungs and this can cause phenmonia - that may lead to death —- this freaks me out the most. So far (knock on wood) he has been ok.
His seizures come 1-2 times a month. They have been mostly mild. This year Brian experienced new 7 Tonic seizures. Tonic seizure were very scary for us. I am not a fan. I literally thought he was dying. This year, so far, he has had a total of 24 seizures.
Brian is completely non verbal now. His last I love you was over a year ago. I no longer hear the uh huh, yeahs, I dont knows. There are times where he begins to moan, actioning trying to communicate… it breaks my heart. I know he communicates in new other ways now, but still, I so very much miss his voice.
Eleanor, our cat, died this year. She had cancer and left us way too early. She sends us signs all the time and it gives me the feeling that she is still here watching over us. She loved Brian so much and they shared a special connection that makes me tear up just thinking about it. She taught us how to die and how to stay connected to spirit after a death. I will forever be grateful for her, my teacher.
A year ago I left work, and haven’t worked since. I just am not able to.I am Brians everything right now. I can’t put my energy anywhere else or desire to. I am so thankful to be able to stay him with him, be in his presence, and be his carer. I wish nothing more right now.
Last December we moved into an apartment with my mom. It has been so nice to have more space and living with my mom has given me a chance to receive a bit of respite time for self care. We spent the Summer soaking in the sun by the pool. We have a patio we take naps on and relax. It’s a lovely welcomed change. I love our home. Our space here is comforting and calming.
Moving into the fall / winter I am feeling content with being indoors more. I am ready to start our hermit and hibernating phase. I feel called to disconnect more moving into the darkness of winter. To retreat in.
If you are called to support us through the holidays below are a few options. We are forever grateful for you, our village. We feel your support and are so grateful to be seen and to be witnessed.
Shop Mālās in person at Home Yoga Studio in Temecula, CA
Shop thespiritofray.com
Venmo Donations @Ray-ilyse
Paypal thespiritofray@gmail.com
GoFundMe
Call, email, text, or FaceTime. Check in. We love it.
XO, Rachael + Brian
