New Hospice

It's another wake 'n' bake morning.

photo by Agnieszka Kowalczyk

Yup...back in that stoner state of being.  Sigh.  I need to quit so I can actually get high again rather than just maintain.  Thank goodness I no longer feel shame about this ongoing ferris wheel (Riesenrad?)  I get clean when I can, when I don't have to fence with the Grief every day.

Be that as it may, we had a visit from a different hospice yesterday, Heart and Home.  This was recommended by Will's doctor, Dr. Sonia Thakur.  We saw her on Thursday afternoon last week as a follow up to the visit from the paramedics two nights before Thanksgiving.

This nurse turned out to be one of my former students!  She took my Philosophy of Love and Sex class long ago.  She is the intake nurse for H&H.  She has a lovely lilt in her voice that spurred me to ask her about where she was born...Trinidad!  So cool.  Anyway, she did an assessment and said that we would be able to get hospice services so I should be getting a call from a regular visiting nurse today.  IF we are accepted in.  The nurse was guaranteeing but I will wait and see.

Although he got antsy toward the end of the visit, he was calm and patient throughout most of it.  At one point she asked him something like, "Are you upset that you can't do what you used to do?" and  he said something like, "Why be upset about what can't be helped?"  And that's what keeps him content, I think, that acceptance.  

We are so blessed that he isn't terrified and angry, that he doesn't understand how much he's lost.  Le Bon Dieu bless anosognosia.

Winter is Coming

 For the past five years I've wondered if this will be the winter that kills him.  But his old body remains strong even as he spends more and more of the day sleeping.  You know the roller coaster of dementia.  He's had weeks like this before but then has popped back up to a full day awake.  

Daniel Kainz

This is part of the craziness for the carer.  Even though you can find plenty of information about dementia in many different places, no experience is just the same as another. This used to add to my experience of the craziness of this ride.  But my experience in September did something to my mind.  It knocked me finally into acceptance, or so it seems.  Acceptance of my situation, acceptance of my addiction, acceptance of this journey as my journey and it's okay.  

I ran into a neighbor while dog walking last week and she mentioned her anxiety and I said, "We're protected and I don't worry about things I can't control."  I didn't add, "since I almost died" or "since I almost accidentally killed myself."  She said that I was facing life with much more equanimity than she.  But really, for my spouse and I, our personal world is far more important to me than "the fate of the republic."  

This isn't, of course, the person I thought I was in my youth, when I was a red, white, and blue patriot, believing absolutely in the promise of America.  I lost that belief in high school and further cemented the loss through the rest of my schooling as I learned about American imperialism.  So some of my equanimity flows from my understanding of America's sins and my sense that all the conflict and division we've been seeing is a "natural" outcome of the structure of an imperialist nation.  Power seeks more power.

But in the Christianity in which I believe, power should give itself away.  The least should be first and the first least.  The powerful should seek to empower the powerless, rather than treating them as farm animals.  The Word of God makes that clear.  The power of this earth is contrary to the power of the Holy.  Christ as the Word shows us that what God wants us to do is raise up those who are fallen, not kick them.  

Thus, I see the dumpster fire of American politics as "natural" to the fall of a failing empire.  Too many people seeking power to protect the powerful instead of healing and feeding the powerless.

Of course I'm protected from worry by our good finances.  We both have pensions and own our house and property outright.  So I can afford to be relatively worry free, if I don't imagine the incontinent future but even that I know I'll be able to manage.  As my therapist reminds me, I'm resilient.

I did get him to the ophthalmologist a while back to find out if his lack of reading was because his left eye was shutting down and it appears that it's actually due to his dementia.  

I hug him and tell him I love him.  It's hard to do things for him because he doesn't want things done.  He fell again two days ago when I was downstairs.  I heard him hit the floor and when I came upstairs he was on his knees.  I couldn't figure out why he'd fallen and he denied he'd become dizzy. I've gotten rid of our rugs but there was a tiny dog bed (for the little guy) in front of an end table and he may have tripped over that.  

Well, this is a rattly entry.  This is such a long, slow, journey, full of answered and unanswered prayers.

Not Dead Yet

 We had a visit from the Hospice assessment nurse yesterday and according to her, he isn't close to dying.  My accident of last week seems to have revived him.  He hasn't lost weight and he can still dress himself.

I was angry and probably rude to her behind my mask because I'm so stressed and in spite of last weeks proof that lots of people care for me and love me, I'm still walking this fucking path by myself.  And he still loves me and wants to care for me.  After the nurse left I started sobbing with frustration.  He came over to me and put his hand on me to show care and later in the afternoon he said, "There's no reason we can't move from Bend."  He was doing this to cheer me, because he'd heard me yell about how I hate this fucking house.  '

He has no idea how hard moving would be for him and how impossible that would be.  But we were able to talk about cities he could live in -- "a college town."  He loves Denver and Salt Lake City and we talked about that.  Of course he repeated everything he said about four times.  Nevertheless, it was good to hear him sounding aware and remembering the cities.

I really don't know how long I'm going to be able to stay sober from weed. The country has a pandemic and brewing civil war.  My state is on fire.

  I wish I had someone else living in the house with Will and me.  Or I wish I had a lover who could drive my pulsing anxiety and anger from my head.   Sigh.

Well, here's some Idle material to cheer me up