UPDATE

 No, this isn't a "bulletin bulletin bulletin".  What is these days?

by Claudia Soraya on Unsplash

 Nope.  

These are some notes written just after a wake and bake about what's been happening, home wise, ya dig?

So.  We are "on hospice."  I have trouble saying, "he is on hospice" as I feel that I am the one who needs them, not him.  I need to have people on my side when the really hard part starts (the part requiring nursing and lifting and the bedside commode and the hospital bed, etc.).  Fuck.

Fuckity fuckity fuck!!!!

I'm not built to be able to show a "brave face" and somehow "hospice" hit me, or I let it hit me, in ways that knowing about his approaching death has hit me a few times before, and I wind up pushing it back but only when I've flung drops of my grief like pitch onto friends and passing strangers.

I have so many projects to finish and I feel distracted and like I can't finish any of them.

I've been here before.  I can dig myself out.

Stoner stream of consciousness.

I walked around our funky classic 90s building in the dark early this morning on first arrival.  I saw a dude working downstairs and didn't want to freak him out by walking past him outside in the light, so I just looked at him and then out at the river and felt the cool breeze against my skin.  Cold breeze.  I think it was 31 degrees F.  As I stood there, a few lines of a someday poem came into my head.

I peak around the corner,
waiting for death as I
once waited for a lover
(plural that over time
times rage and hunger)
it's ETA now evidenced
to governmental gate -
keepers.....

And that's as far as I got!

But to continue with the update.....

He weighs 131 pounds on what was once a 6'2" frame with really big bones.

He doesn't eat very much.  I make sure he has protein snacks at various times to try and keep him more stable on his feet.  Heart and Home got us a walker but he hasn't chosen to use it yet.  I've gotten rid of all the rugs in the house except the old Afghani carpet in my old study (which I don't use anymore because he likes to be around me, I think?  He appreciates my presence.

He is generally content when he is awake, though reading very little, at least when I am in his vicinity.  Does he read when I'm not around?  I don't know.  I sometimes see him sitting in a chair looking at a book when I'm doing yard work outside the front window.

When nurse Kim came on Monday (Kimday, EFMday), she took his blood pressure and (drum roll please) it was pretty much the same as it was when he was taking the lisinopril!  (We -- Dr. Thakur, Nurse Kim, and moi -- have taken him off all life-sustaining medication.)  I keep thinking of General Westmoreland purportedly saying, "The beginning of the end is beginning to come into sight."

 

Wackadoodle

 Him at breakfast, about seeing my computer on top of a box shaped like a book:  "You put that little typewriter on top of that big book, but you didn't put it inside the  book."

Me:  "No, I didn't."

Him:  "Oh my goodness, what would Eleanor Roosevelt say."

Eleanor Roosevelt, First Lady of the United States, with John Curtin, Prime Minister of Australia, at a state luncheon in her honour at Parliament House, Canberra.

 

 

 

 

 -------------------------

Addition 12/16/2020

Him, sitting in a wingback looking out the front window: "I'm looking out the window and I can see the . . . tree in front of our neighbor's house."

Me, in the twin wingback: "That must be pretty."

Him:  "Oh, it is, but if they knew, . . . well they'd try and put a stop to it!  I'm going to take a nap."

 

 

 

 

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

Kake and the terrible, horrible, no-good very bad day

 

Before "brainstorm" meant a bunch of people sitting around throwing ideas at each other, it meant a brain overwhelmed. "by 1861 as a colloquial term for "fit of acute delirious mania; sudden dethronement of reason and will under stress of strong emotion, usually accompanied by manifestations of violence." 

I had such a brainstorm on Friday, though I gave it a more contemporary name -- "emotional hijacking."  I'd forgotten that the term Daniel Goleman used was "amygdala hijacking".    

Friday started off crappy.  The night before I'd chatted with our caregiver about how things were going and we agreed that my spouse has probably entered the dying process....he is eating very little, sleeping much of the day, shuffling.  So I woke up sad.  And then, in answering an email, I got sadder and sadder and was crying out loud in my shared office space.

Then, after I came home I got breakfast for Will then went outside.  I told him I was going outside with the little dog.  I was cleaning up some clippings in the back yard when I heard the back door close and lock behind me.  That's when the fear and the rage it produces started flooding me.  I ran to front door which was also locked.  Then I started beating on the door with my hand which first hit the wood and then hit a glass panel -- oops.

AND blood started spurting from my wrist with great gusto and I knew I did NOT want to die.  (It's been a good 24 years since my last suicidal ideation.)  I immediately put pressure on the spurting spot and ran across the street screaming "Help me!  Help me!  Call 911."  And in seconds, three sets of our neighbors were out helping me.  One, who works rescue on the mountain in the winter, got my hand wrapped in a towel and got me holding my hand above my head.  Another called 911.  Another went across the street to be with my spouse and try and explain to him what was happening.

By this time, I was terrified.  Mr. Rescue Guy kept telling me to stay calm, that I was going to be okay.  He also called the Bend Senior Care Management person who is in charge of Will if I get sick or die.  She couldn't find carers at the  beginning of the four day weekend so she came herself and called in a church friend who got me on a prayer list.  Another friend from my former workplace also came over and then our regular carer came at 4:30 - 7:00, her usual times.

The firemen who came to get me in their red truck didn't use the siren on the way to the hospital because I wasn't in dire straits, so they said.  They rolled smoothly to St. Charles.

I spent 7 hours in the emergency area at St. Charles and then at 5:00 finally was rolled into surgery.  I believe the cause of my long wait they were a bit short-staffed while being super busy.  As I waited, I had my medical history taken about three times. And because I have a history of depression, a couple of folks questioned the accidental nature of the injury.  I told them that the injury wasn't created consciously but that I couldn't speak for my subconscious (waving my hand at the back of my head, as though the unconscious lived there!)

 The regular emergency room doc took a look at the wound while I felt my very hot blood spilling over my own hand. (I was surprised by how hot it was.) He said that the cut required a vascular surgeon.  So, more waiting.  I tried watching a movie on my phone but the battery was almost dead by 3:00. So my 7 hours were a mix of fear and boredom.  While I was prepared to go home when I thought surgery was going to be at 3:00 pm, I was told that I would need someone to stay with me to care for me and I didn't want to try to arrange that.  Nor did I want to try and sleep in our 80 degree house after a 99 degree day. 

Funny bits: 

1. The nurse who reminded the surgeon to mark the correct arm...even though I had a huge bloody bandage on it and the other arm was fine.  Dr.
   
2. I made what could be considered a sexually harrassing joke...I thought it was funny but the nurse who was getting me ready for the operating room didn't crack a smile.  While she was helping me get my underwear off I said, "And I didn't even buy you dinner."
3. The hospital food service had NO dairy free cheese and LOTS of dairy involved options to eat.  Pretty funny for a hospital, to be unable to serve all dietary needs.
   

By 7:30 or 8:00 pm I was in an upstairs room.  I ordered dinner (not very good and didn't follow my request for toast) and was ready to sleep by 10:00.   

All the nurses were very nice and the doctor was amazing.  I wound up with a small bandage and the opportunity to stay overnight in a cool room.  Because I can't sleep without some talking in my ear, I had the TV tuned to C-Span books and fell asleep to former presidents chatting about their books.  (George, George, Bill, Barack).

I was up at 4:00 on Saturday morning for blood pressure, etc. and couldn't get back to sleep.   I watched tv till 6:00 then ordered breakfast -- the omelette was actually pretty good, except it could have used some fake cheese.  After that, I kept annoying the nurses with "I want to go home" and "When is the doctor coming to see me?"  Finally, everything was in place for my wheelchair ride down the elevator and out to my friend's car.  I got home by 10:00 am to find that my kind neighbors had put cardboard over the hole in the front door and cleaned up all

Even though I felt like an idiot for allowing myself to be subject to an emotional hijacking, over and over people assured me that being overwhelmed emotionally was to be expected on occasion in my role as caregiver.  

But next time I'm going to lay down on the ground, take deep breaths, and count to 10, 20, or 100 before I respond to the angry demands of my alligator brain.

 

 

Betrayal?

 Am I betraying my sweetheart to write about him here?

Photo by Aaron Burden on Unsplash

I ask myself this about every topic and every memory I share. Once, long, long ago during my first burst of writing fiction, I asked him if he minded if I wrote about him.  He said, "Yes" and so I didn't but found other intense relationships to address with pen and ink.

Later I wrote a bad novel with Will as one of the characters.  Not a lead character, no, but the loving husband of a rapacious gay man who was center to the tale.  My spouse read it and had little comment on it.  (The outside world gave about 35 rejections, one of which, by a leading gay NY editor, was actually rather "positive.)  

Once, after a poetry reading during which I'd read a revealing, published poem, I asked Will how he felt about my sharing such work.  He said, "It's all part of the literary life."

Our relationship has been filled with perceived betrayals on both sides.  But it's also been filled with a love that could contain and drown the pain of our differences.  We forgave each other over and over, though usually with actions rather than words (he was far better at this than I).

And now we are in the last, long, strange, part of our journey together.  If he understood and "felt" what was happening to him, he would be very sad.  Or he could still be as angry and frightened as he was at the start.  As it is, he seems relatively cheerful or he's asleep.  

And I think my fear of betraying him is a sign of that evil, lingering, unconscious hope that he will be my husband again and be angry and hurt that I'm writing this. 

My husband is gone.

My sweetheart is still with me.  

"I think you'll like him"

 I was thinking about when I first saw him.  I could call it love at first sight.  That's because he was my physical "type" and he was vouched for.  What happened was that my aunt Huldah Bell pointed him out to me in the darkening theater in the basement of the Fine Arts Building at Idaho State University.  We were there on a Sunday night to see a foreign film as part of the "Cinema 6" program of which Will was a leader.  That nighty it was Bergman's Virgin Spring -- definitely NOT a romance.  Before the movie started she pointed to an hirsute fellow across the isle from us -- he had long hair, a beard, glasses, and looked skinny.  He stood up tall.  Definitely my type.  A shaggy ectomorph.  Not unlike the handsome star of the film.  After pointing to him she said, "That's Will Huck, a friend of mine.  He's weird.  I think you'll like him.

I told my sweetheart about my memory just now and said that I'd always loved him and liked him.  He asked, "How is Huldah Bell?" 

I said, "She's dead."

"When did she die?"

"In 2002 or 3."

"I must have forgotten.  How could I forget that?"

"It's not important," I said.  "You remember the important things -- like that you love your dogs and your wife.  The rest isn't important."

Numbing

I wish I had the proper metaphor for the complicated grief of being a dementia carer.  Is it like having a tooth pulled for five years?  Like having one's leg cut off a millimeter at a time?

I feel some shame for my current relapse into weed addiction.  I was straight all through May and then fell again.  I will need to sober up again soon in order to do my proper work as a facilitator in an ongoing church program.  I sort of look forward to getting clear again, although I know the first

two weeks will be very hard.  And then I will be able to "feel my feelings" again.

Great.  Just fucking great.  

I think about my former therapist and his way of asking if I was numbing myself, his tone telling me that it was exactly what I should not be doing.  Why is it that it's okay to numb some physical pain but not emotional pain?  

My current therapist understands why I'm numbing.  She's not supportive of my choice but she doesn't shame me.

Plucked

Photo by Javardh on Unsplash

Hope is a bitch.

Yeah, I know, it's also one of the great "things" (NIRV) that "abide" (NRSV).

But here's what I mean.  And if you're a fellow dementia carer you've had this experience.  After a couple of almost nonverbal days we'll have a conversation and it will seem like he is "back."  That is the bitchy part of hope, to throw that feeling of hope into my brain, that feeling that he's still there.  That sense of connection.  And then..well, he'll say something like, "Oh, you wrote a book?  What book is it?"    And while I've understood for two years that his short term memory is shot, still, after all the brou-ha-ha about the book in my life, such reminders can be painful.   The man I knew is gone and isn't coming back and this ancient child is what is left of him.  And I want to punch hope, that thing with feathers, in the nose.

Faith and love, however, are supportive, however, not a pain in the ass.  I still feel such love for him when he smiles, or does some household task, or hug him.  The soul in him I love (and that my "out of the everywhere into the here" soul chose before my birth, or so I have been told) and have loved since I first met him.  We've had many struggles but he had faith in my inner goodness, even during the years I was acting the "bad girl."  And his faith in me paid off...he has a loving caregiver and a home to stay in during this last strange inner journey. (Unlike my beloved Aunt Huldah Bell, who had to depend upon loving friends and family who didn't live with her.) And I have faith that the Great Mystery (a.k.a. "God") has been guiding my old sweetheart and me on our walk through the valley of the shadow.

I think I'd rather be without feathers.

Theatrical

A friend sent me a link to a play offered by Senior Theatre Resource Center. The play, Love in 4/4 Time, by Gary Young, focuses on two couples as they deal with partners who have dementia.  I decided to purchase my own copy so that I could share this
paragraph:

Photo by Lennon Cheng on Unsplash

CAROL: (beat) That was the moment I fell in love with him—and embraced his spontaneity. (beat) Thirty-five years ago. (beat) That story sustained our marriage. (Ted stands, turns on stool with back to audience) Now, he doesn’t remember it. (beat) Alzheimer’s has… has robbed us of his spontaneity. (beat) Now, he calls me “Sis.” (beat) Ted’s sister died at eleven, he was nine at the time…I used to visit Ted every day, without fail, around lunchtime…now, three or four times a week…(beat) it is “The Long Good-Bye,” to quote Nancy Reagan. (beat) I still long for him, miss him…need him…but when I look into his eyes, I can see his memory of me fading…I feel like I’m fading away too…his doctor said, “Ted is dying because his brain is dying. (beat) Eventually, Ted’s brain will not remember how to breathe.” (beat) You know, it’s not death that weighs on me…it’s the never-ending dying… I have two prayers: one says, “Please not today, please - let us have one more day together.” The other says: “Please…let it be today, let us be through with this. Please, please, please.” (beat) In a sense, Ted’s left me behind…and who’s to say that I won’t “go” first? Would he miss me…would he even know that I died? Died, loving him. (beat) So, what now? What’s next? (Carol, shrugs her shoulders in resignation.)

That's how every day is.

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.  😼



 

Good Knight Death

I met my sweetheart at the movies.  At the movie The Virgin Spring to be exact -- and before I ever knew Will and loved him, we were both admiring the genius of the actor Max von Sydow, whose body, I would later discover, was very similar to Will's.  Then, as Will and I grew to love each other, into our love was folded a love for the work of Ingmar Bergman.
Thus I felt sad on Monday when I told him that Max von Sydow had died and he couldn't remember who that was.  I made a little meme referencing The Seventh Seal (1957)

Unintended Consequences of Prayer

CDC - COVID 19

I am currently taking a course in Christian (Anglican) theology so I am turning a theological eye upon almost everything (as a student is wont to do).  So I look at COVID-19 and wonder about its relationship to The Great Mystery.  On one side of Christian theology are those who believe that disease is of the devil and not what I will call God.  There are others who believe that disease is a biological/chemical process with a history and causes.

I am of the belief that The Great Mystery is (in part) a great force, the great creative force within the universe, both Life and the source of life, conscious as its created creatures are conscious. 

Now I'm not so sure about supplicatory prayer -- not sure how it works though I believe that it does sometimes work, though not in any predictable way.  Nevertheless, I know that there are many, many people praying for an end to or salvation from dementia, which is in epidemic proportions around the world in those places where people live into old age.

So here's my thought:  COVID-19 might be an answer to all those prayers for a cure for dementia.

A Note of Happiness

There are events and moments when I receive signs that my sweetheart's brain is still operating -- when his executive functioning still functions.  At these moments I send up thank you prayers to God.  For example -- when the new deck was finished I had one of the workers write out a handwritten note that he had received my check.  I folded this and put it on a stack where I keep money notes that I need to be aware of.  Well, my spouse found the note and wrote himself a note and then gave me a check for half of the amount he found on the receipt.  This wasn't for the full amount of the deck but that didn't matter to me.  What mattered was that his brain was working well enough to do of the following:

1. Remember that we have had an arrangement in the past where we each pay half of the household expenses (and the deck is a big household expense).
2. Calculate what half of the bill was.
3. Write me a check.
4. Give me the check.

It didn't matter, of course, that it wasn't for the full amount (I have access to all of our shared funds).  What mattered was that he still remembers stuff about how we live together.

Meme

It's OK I'm not OK

"Death in the Sickroom" Edvard Munch (National Gallery, Oslo)

One of the members of the Facebook group focused on Caring for a Spouse with Dementia recommended Megan Devine's book, It's OK That You're Not OK and I posted a link to this blog (I've been given special permission to post a link) because I'd already started writing about it.  Today I have a bunch of quotes from the book, beginning with a sad thought about friendship:  "And -- it's one of the cruelest aspects of intense loss:  at a time when you most need love and support, some friends either behave horribly or they disappear altogether . . . People say the weirdest, most dismissive and bizarre things" (p. 81)
Many of the folks in the Facebook group complain about this: the absence or pseudo-helpfulness of friends.  A carer might comment that a friend has walked up to the person with dementia and said, "Do you remember me?"  and then watched as the person with dementia struggled to remember.  Some carers use this sort of event as an opportunity to educate the friend.  Other carers will say that this person should no longer be considered a friend.  Then an argument might ensue about whose responsibility it is to educate people who are not walking our walk -- is it the carers or the outsiders?
The issues around friendship and grief are compounded by social media envy.  Sometimes the fun that our friends are having gets under our skin.  Members of the Facebook group have commented about how painful it is to see friends traveling or having parties when the life of a carer is so constrained.
I myself have an old friend who tells me about all the trips he takes to Europe and New York, the plays he sees, etc., yet refuses to share enough details so that I can join in with him vicariously.  I once asked him to describe the wonderful meal he once had in Catalonia and he told me, "I'm not a food blogger."  I wanted to tell him, "What if you thought about this not as food blogging but as responding to a request from an old friend who is currently trapped?"  But I didn't.  What I've wanted to hear him write is, "I'm so sorry you're going through this.  It must be really, really, hard."  On the positive side, he's done what he could with birthday/Christmas presents to give me support with gift certificates to food prep services.  It's hard for folks outside of intense grief to know what life inside it is all about.

Here are a few more good quotes from Megan.

"It's easier to create sets of rules that let us have the illusion of control than it is to accept that, even when we do everything 'right,' horrible things can happen."  (p. 45)
"The most efficient and effective way to be 'safe' in this world is to stop denying that hard and impossible things happen.  Telling the truth allows us to connect, to fully enter the experience of another and feel with them.  Real safety is in entering each other's pain, recognizing ourselves inside of it." (p. 55)
"We can never change the reality of pain.  But we can reduce so much suffering when we allow each other to speak what is true, without putting a gag order on our hearts. . . .We can stop hiding what it is to be human.  We can craft a world where you can say, 'This hurts,' and have those words simply received, without judgment or defense." (p. 61)
"We have to find ways to show our grief to others, in ways that honor the truth of our own experience.  We have to be willing to stop diminishing our own pain so that others can be comfortable around us." (p. 62)

Where Did I Get This Jacket?

        Sad moment. 

Shopping street Passeig de Gràcia by Tokyographer on Flickr CC

        One of our favorite travel stories has long been one from back in the mid-90s when he traveled to Barcelona with a school-sponsored group but without me.  There were a few other adults accompanying the students.  One day he went out with the older couple and stopped into a leather store.  There he decided to purchase a beautiful black jacket of very soft, supple leather.  It cost $400.  The female member of the heterosexual married couple then chided him for purchasing such an expensive item without asking his wife for permission.
        Oi vey.  When he got home and told me that story (after giving me the black leather purse he'd purchased in the same store), we laughed and laughed.  The assumption of the wife that we were the same kind of married people as they got to both of us.  We have never had to check in with each other on personal purchases.  We laughed about this many times.
        Well yesterday when we took the dogs out for their afternoon walk, he put on his beautiful, soft leather jacket.  We'd recently moved it from the far side of the entryway closet to the center.  It looked so much better over his giant old black sweater than the turquoise jacket he's been wearing.  I told him how good it looked. 
        And then he asked, "Where did I get this jacket?"
       

It's OK that You're Not OK

My therapist recommended this book by Megan Devine.  It's about "Meeting grief and loss in a culture that doesn't understand."  Ms. Devine lost her young husband to drowning completely unexpectedly. She writes from her own awful experience and that of others who have attended her grief and writing classes. The focus of her book is on accepting grief as a part of existence and not trying to make it "go away."  It has good information about living with grief and being with the grief of others.  For my next collection of posts, I'll be responding to some of the "tasks" Ms. Devine gives to her readers next to the heading, "try this."  The first one of these is about the "positive" comments that friends of the grief-stricken may offer.

"The Second Half of the Sentence
For each of these familiar comforting statements add the phrase 'so stop feeling so bad.'
At least you had her for as long as you did [so stop feeling so bad].
He died doing something he loved [so stop feeling so bad].
You can always have another child [so stop feeling so bad]."

If you cringe or feel angry when friends and family try to comfort you, it's because you hear the second half of that sentence, even when they don't say it out loud. . . . To feel truly comforted by someone, you need to feel heard in your pain.  You need the reality of your loss reflected back to you -- not diminished, not diluted."  (p. 21)

Dementia carers carry a mix of anticipatory grief (because dementias are usually a terminal diagnosis) and complicated grief (the demented one is both here and not here).  Sometimes well-meaning friends respond to our statements about the losses of our loved one by saying something like, "I'm forgetful myself" or "I'd like to forget my bills, too [so don't feel so bad]."

What this sounds like to us is, "I'm forgetful myself [so stop feeling so bad]."  "I'd like to forget my bills, too [so don't feel so bad].

Ms. Devine also offers workshops from her grief website.

Senile Penile Delinquent

Oy vey.

I did not tell him that he had a doctor's appointment until this morning, although it was listed on two wall calendars.  I knew that if he had more than one day there would be worries and upset.  So I told him this morning when he wandered out in his nightshirt to say good morning to me and the dogs.

After he got up the second time and got dressed (very nicely -- blue and green striped shirt under a pink sweater) he came and sat down next to me at the breakfast bar where I was writing checks for our estimated taxes.  This was odd and I was sure I knew what he was going to say and he said it.

Sandy Millar on Unsplash

"I have an idea -- let's cancel the doctor's appointment.  I know why I bled.  It was because I masturbated too hard."

I calmly said, "No, I'm not going to do that.  I know you hate doctors.  I know that you feel afraid.  But Dr. Thakur wanted you to see a urologist and I want to follow her directions.  I care about you and love you."

Well, he wasn't happy, but we got out to the Summit Group Urology shortly after noon.  I remembered to bring my POA paperwork and I did my best to fill out all the medical history forms, what I could remember of them.

And, as I thought would happen, he was loud with everyone.  With the physician's assistant, at one point he told her he couldn't hear her and then when she spoke up he raised his voice and said back to her what she had said.  When Doctor Baker came in he managed to insult her by saying that doctors just wanted to perform procedures in order to make money.  I was mouthing "sorry, sorry" at her as he was talking.

Mana5280 on Unsplash

Sadly, I don't think she had a lot of experience with folks with dementia as she tried to use logic with him saying that because of his phimosis she couldn't see if he had a lesion that had produced the blood on the sheets (our purpose for being there).  She said that if she didn't perform either circumcision or a dorsal slit she wasn't able to tell us why he had bled.  (I tried to make a joke here asking if they had a mohel on staff.)  He was very loud about not wanting to go under the knife.  She tried to scare/reason with him by saying that she would rather see him in her office before an emergency that might really put him in the emergency room.  He once again said something like the trouble with doctors is that they want to perform these new procedures and she said it was hardly a new procedure and that she had performed it many times.  (Once again -- reasoning.  It just don't work.)  As a person sensitive to nonverbal cues, I could observe/feel her irritation rising to meet his (she was pretty steely) though she kept her voice calm and said that she respected his decision. She was also kind when she helped him pull up his undies.

And that was that.  We paid nothing.

I was actually most upset when I found out that his weight is down to 130 but as my friend Stacey reminded me last night, losing interest in food is one of the steps of the body getting ready for death.  It's a natural process.

A Dementia Murder/Suicide

From December 29, 2019 New York Times story by Corina Knoll

It is very hard for many dementia carers to reach out to friends.  It's certainly been a challenge for me.  It seems sometimes like just keeping myself from falling into utter despair so that I can continue caregiving is all I can do.  But I keep at it, reminding people how much I need them when I have the energy to do so.  As I noted in a previous post, I have addiction issues around MaryJane and I fall into the recovery/relapse.  When I get high, I don't mind people forgetting me.  But I also fail to reach out when I'm high.
The result of not reaching out can be found in this story in the New York Times about Richard and Alma Shaver.  They were married for 60 years.  She got Alzheimer's and in spite of all the advice and offers of help from their children and friends, he refused to allow people into their lives:

When his wife was diagnosed with Alzheimer’s disease a few years ago, Mr. Shaver avoided discussing it and grew evasive about the future. He dismissed offers of help and suggestions that he hire a home health aide. His daughter Karen McDonald wanted to buy him a home near her. He declined."  (Corina Knoll, Dec. 29, 2019)

Then, at age 79, Richard shot his beloved wife and himself.

If dementia has any theological purpose (if anything has any theological purpose), it's the production of compassion and community around the demented.  

Word of Wisdom to caregivers:  reach out, reach out, reach out.