2022 - a year in review
I posted a story yesterday about what grief looked like yesterday. A bit of confusion on B’s part when I asked him to touch my nose. He pinched my cheek. I said “no baby, can you touch my nose?’” He pinched my cheek again.
I have been noticing him a bit more confused lately. Not really fully understanding me. He does understand some things, others not.
I got a few responses like maybe that was intentional, maybe he meant to do that… and yes, maybe. But, I am with him everyday. I see the bits of progression. The loss of movement. The loss of speech. The confusion. The lack of appetite. The little things.
No one else really sees this daily, besides our lovely hospice nurse : my mom : his grandma….
So I decided to share what progression has looked like this year.
Brian has not taken a shower in a year or been in a bathtub. We wash in the bed. Something I am so grateful I learned to do while working in spas and in my Death Doula training.
Last December he was still walking and using a cane on his own. He was hungry + really enjoyed hamburgers. His mom would call him the Hamburgler. lol. McDonalds was something he really enjoyed. Not being able to taste much I feel he liked this because it was familiar. You can imagine what that tastes like just by looking at it.
The last time Brian said my name was May 19th. I asked what my name was and he looked confused. He couldn’t think of my name. I said, can you say Rachael… and he said it ever so gently and slowly. Just like he was sounding it out…
Brian stopped wanting to take his medicine in July. Since then he has seizures every so often. Around this time he stopped standing on his own, walking on his own, and using the bathroom + toilet.
On August 11th we went to visit his grandma for a bit. On our way home I said that I really enjoyed our drive today and visiting his grandma. He looked super confused. Like he didnt remember what we just did….
In September we gained each others trust with the wheelchair. I think he was not sure if I was able to assist him into it. would say baby I got you, just like you got me. Once we figured out the transport + trust we were able to get outside, go for walks, it was so lovely. Nature is truly healing.
It got cold in Reno really fast. Our walks came to an end but we are still going for drives.
For the past few weeks Brian has been eating less and less. I am sure he is intaking less than 1000 calories. He has lost some weight, I can tell in his body + his face. His strength helping him stand up has been much heavier, almost like dead weight if that makes sense.
He is still able to feed himself, but does prefer if I feed him. He has been enjoying juice, milk, spaghetti os, jerky + cookies. Our nurse said that sweets is one of the last tastes to go….
In my journal last year around this time I was thinking that last Christmas would have been our last Christmas together. And I am so grateful that that was not reality. I am so excited to celebrate + spoil him this year. Presents are already under the tree and we have been enjoying holiday movies in the evenings.
Just because progression is slow moving does not mean it is not happening. Just because you do not see it, does not mean it is not happening. This disease is real. Its heartbreaking. Its unfair. Its reality. It is his journey + my journey along side him.
My word, OUR word, for the new year is home. Being home with him. Being in presence with him. Giving our home + family my energy. We are each others home. We are walking each other home.
