The Band

It's been a difficult few days.
There is no doubt that my mother's dementia is progressing. The doctor is now calling it ischemic microvascular disease with a "possible touch of Alzheimer's". Last year the neurologist called it vascular dementia. With either one, all we can do is wait.
I was with my parents this morning when the doctor told them there is no further improvements to be made. My mother cannot walk safely on her own, she cannot feed herself due to trembling hands. She has a condition called "echolalia" where she answers any question by repeating the question back to you, word for word, tone for tone. When she grasps something in her right hand, she oftentimes cannot let go -- this is called the "palmar grasp reflex". These are both early indications of growth in the forward developmental stages of a child, and are both indications of advanced deterioration of the nervous system in an elderly adult. My mother has now been referred to hospice - a good sign, since we will all need help with the coming transitions.
And then I came home tonight to a house full of music. The band was here rehearsing. The music is complex, beautiful, intricate, compelling to dance. The tunes can be light with words of dread, or deep, dark tunes with a hopeful message. Balkan music.

My musician takes care of me when I am home and worn out from caring. He makes me dinner, listens to my stories, and plays music that brings me back to life.

Party guy

The band had a gig last night and he struggled to get up this morning.

I was married before, to a guy who was the center of the party by drinking and snorting himself into the ground and sharing with whoever was willing. The next day was always awful as he fought off the hangover and was only capable of horizontal living that day.

He is the center of the party alright, but music is the subject, and his accordion makes people want to dance and shout and hold the hands of total strangers as they dance in perfect unison that somehow, mysteriously, creates a feeling of transcendance and connection in the room. It is warm, fun, adults playing together. And just for that time everyone is back in a village where they know everyone and the connections are deep.

Big Agnes

My profile says that I am close to 54 years old. Now, when I was in my early 40's an older friend told me that they weren't comfortable backpacking anymore because sleeping on the ground had gotten too difficult. I was skeptical, but then as I approached my 50's I found myself spending $$s getting more and more thermarests until I was carrying 3 of them on any overnight.

Then I met a woman who was backpacking at 58 and she introduced me to Big Agnes sleeping bags -- back to air mattresses, only this time they are attached to the sleeping bag so... you can't find yourself laying next to the mattress in the morning and, at 50, unable to get off the ground.

My mother has dementia. She stays with me sometimes when my dad needs a break. I cannot sleep in the same room with her because of the noises she makes at night. I cannot sleep too far from her because she wakes up screaming for my father sometimes during the night and needs soothing. I sleep on the floor a room away in my Big Agnes sleeping bag. And my sweet musician grabs his bag from Big Agnes as well, zips us together, and sleeps on the floor next to me.

Return of the musicians

Mom and I travelled back to Seattle yesterday by plane and my musician came home later in the evening. I sleep near Mom to be nearby when she cries out from her sleep, anxious and frightened about my father's whereabouts. She tells me she is afraid he won't come back whenever he is gone. She would truly be lost without him.

My father traveled two days by car with my sister to come back. 88 years old, he slowly climbed the stairs into the house this evening at 7:55. She had fallen asleep in her wheelchair by the door waiting for him. He kissed her and smiled at her and then went to get the cat out of the car too.

Then our musicians sat by each other at the piano and played and sang until Dad nearly fell off the chair asleep. There is another story there, but that is for another time.

Far Away

I am with my parents in the southern California desert and he is in Portland with his father and stepmom.
I am here for the sunshine and hot springs, but also because my mother has dementia and my parents need to go home from their snowbirding a month early because my father is (finally) having trouble caring for her on his own.
He is seeing his father and stepmom's new house for the first time and says it is lovely, but stepmom's allergies are not improved. I know his father and he will play music late into the night tonight -- they always do.
4 days without hearing his music... where is that rainbow?

Morning commute

Sometimes his music speaks louder than words.

We commute together to our places of work. For the most part we drive to his work and I take a bus from there to my workplace downtown. When he is ready in the morning and I am not, the tension starts to rise (any couple that has ever gone anywhere on a timeline together know this feeling). and then...

he plays the piano. Sometimes something soft and soothing, other times with a beat inspiring a fast pace. This week it was "Over the Rainbow". I had to tell him that I felt like we'd made it over the rainbow and are safely together on the other side.