Good Days/Bad Days

Yes, it's a roller coaster.

photo by blueberry Maki on Unsplash

The first two days of this week he slept and slept -- almost all day on Monday and Tuesday both.  Why?  Because he was dying?  No.  Probably because it was overcast.  Then on Wednesday he had two appointments -- the last visit of the Home Health nurse and foot care at the Feet Retreat.  He disliked the former but really enjoyed the latter.   He was up most of the day.  Because it was sunny?  Probably.  Sadly, the nurse's visit showed that he had lost weight.  Then yesterday, Thursday, he ate a big dinner:  cooked carrots, mashed potatoes, and a high-stacked ham sandwich.  So that's part of the whole caregiver thing -- getting ready for the end, being happy it's not, thinking he's going, thinking he's staying.

"Up and down, up and down... goblin lead them up and down."  Dementia is a goblin, but not a sweet one like Puck.  That's my first cultural reference.  And here's the second:  "Hello, I must be going."

My big news is that I hired a caregiver for three hours every Thursday night so I can get out of the fucking house and have dinner by myself somewhere.  The first week of June I will actually be going to an actual RESTAURANT!  But most of the time I'll probably be picking up food and going to my office.  Or even picnicking!  This change will give me something to look forward to that involves both eating and spending money -- two of my favorite activities, currently.

MELTDOWN!

Yesterday I crashed, loudly and publicly. Crying turned to weeping, weeping turned to sobbing in private which turned to wailing in public in the parking lot at Birdy's veterinarian.  At one moment I was crouching on the floor of my living room, fists clenched, chest heaving, gut tight as the grief and sorrow ripped through me.  It was a terrible, horrible, very bad day.  Until the end.

Winston and I on May 5

 It started when I went to my office and couldn't get logged in to the network no matter what I tried.  Or perhaps it started last Thursday when I abandoned the herb again.  Or perhaps it started when a really great day last week was followed by four days of observable decline.

    The great day?  We watched two plays on television:  Frankenstein from the National Theatre with Benedict Cumberbatch as the Monster followed by the Newman-Taylor-Ives version of Cat on a Hot Tin Roof on TCM and then he ate a big dinner and we actually had conversations.  The next day was overcast and he spent most of it in bed, same the following day.  He was also moving much more slowly. The happiness of the good day threw into stark contrast the sadness of the following days.  He is moving so much more slowly.  He forgot to make himself breakfast the past two days (I made it for him -- cereal and a banana).  He sometimes stares at me blankly when I talk to him.  Conversations are a challenge.

     The great day was the same day I went off weed.  My doc has prescribed gabapentin to get me through the withdrawal period and while it's incredibly helpful in dealing with the physical symptoms, it's not as good on the anxiety.  And if I'm honest, there were other physical issues that were part of the meltdown -- I hadn't had breakfast yet, hadn't taken my antidepressant, and was full of coffee.

     And then there was a clusterfuck of little disappointments starting with not being able to log into my office wifi.  And I actually started crying in my office.  The crying turned to sobbing.  The sobbing turned to actual wailing as I felt the built-up sorrow sweeping through me.  Then grief hijacked my brain.

     When I got home from the Haven, I took a picture of my sad face and posted it as my Facebook profile picture.  I was actually concerned about aesthetics when I used Photo Booth to snap a picture of myself and the little dog several times, making sure to let natural light from catch the trail of my tears.  That was my call for help, a call that was answered by many friends on Facebook who sent me virtual hugs and asked what they could do to help me.  Unfortunately, a few thought that the sad picture was an indication of my big dog Birdy's death!  Weird.  So I had to end that and posted a picture of the three of us -- Birdy, Winston, and me -- at the end of the day.

    So -- a rough day ended as well as can be expected in these times.

I'll leave you with Macbeth's famous understatement.

Back In My Office!

I haven't written on this blog since March because of the lockdown.

A dementia-carer meme from early in the lockdown

 I was discouraged from going into The Haven, my coworking space, because of the extremity of the first closures.  Now they have practices in place for proper pandemic etiquette and I'm so happy to have my restful view again.

I am more than fortunate in my dementia care and am always thanking God for the following:

• my spouse is sweet, loving, and childlike, exposing the boy he was before he became the sweet albiet cranky, critical man he became.
• I can still leave him alone in the house and he will be okay.
• I'm now in charge of all the money and have been able to use some of it to contribute to the needs of others, including members of my coworking space who weren't able to pay for their space themselves.
• I have an awesome community of support that includes friends from my former job, friends from my distant past, and friends from church. 
• I have been developing a deeper relationship with my wonderful niece.

My spouse has declined during this time.  Coincidental?  Due to his reading about the virus?  Due to our not being able to bring people into the house or go out shopping together?  We are now on Home Health through Partners In Care so a nurse comes once a week to check up on him.  The assessment nurse noted that since he could speak in complete sentences and walk across the room without tripping, he wasn't ready for hospice.  (Dr. Sonia would have preferred Hospice for some reason -- more support for me, perhaps.)  He is very thin and got his first pressure sore last month.

I am missing being inside my church with my church friends.  Trinity has been having services online but as much as I enjoy the online world, with its sights and sounds, I'm too much of a mammal to be content without the smell and touch of my wonderful friends.  I miss hugs.  Wait, let me put that into the proper form:

I MISS HUGS!   I MISS HUGS! 
  
Whew.  I needed to say that.

 And adding to my grief is the grief of our church community due to the totally unexpected death of the retired priest who had been Trinity Episcopal's pastor for 14 years before moving to a greater position and then retiring back in Bend.  

Well, I'm in the second day of recovery from maryjane addiction.  Yes, it's the eternal addiction/relapse cycle.  Sigh.  I love the herb but sadly, my control of my usage changed when I retired from teaching and became a dementia carer.  So... for the past three years or so I've been riding the cycle.  This month, hopefully, is sobriety month.  Maybe next month too.  We'll see.  😼