Family

 I'm going to be annoyed with family for a little while this morning. 

still from the film of August, Osage County

First, let me say that there are plenty of people who care about me and want to help me in in my current situation.  I don't need my small family, though I do love them.  So I feel sad that the two of them each  made commitments to me and then forgot them, but it's not devastating like it was when their mother told me not to come to help her when her husband died because I was "too emotional."  It took me years to work through that.  I know, I know.  Everyone grieves differently.  Then I found out that she suggested to my nephew that I didn't want to go to their father's celebration of life which wasn't true...I had a trip planned and she told me that it was okay to go...so I did and it turned out to be a terrible trip, so I should have stayed. You see?  Already there's too much drama.  My family, my life, has had way too much drama.  Too much mental illness.  Too much self defense.  Why do I still carry pain over the times I've been ignored?  Because of Mom.  Because of Mom walking out of the house and leaving me with the one who hurt me. Because of Mom leaving me so many times.  So, "when am I" right now as I think of my niece and nephew, both in their 30s?  Why does their "abandonment" disturb me?  After all, it's just karma...I ignored my Auntie Vio, a wonderful person.  So my niece said that she'd read through an interpersonal communication textbook with me and then decided not to.  My nephew said that, for my birthday and/or Christmas promised he'd send me an email once a month to catch up.  And yuppers, you guessed it, neither have come through.  But it's okay.  I understand.  I've had a church assignment for the past three weeks to call three people and I haven't done it because I'm so afraid of cold calling.  But I'll do it today and see if I can up my karma.

As for my sweetheart...for some reason he sat up all day in one of the wingbacks wearing only a shirt, a robe, and underwear.  I kept putting a blanket over his old legs.  He could name me yesterday morning, kinda, calling me "KayKay."  

He can get out but three words of any sentence.

The Good News:  I'm going to Vancouver once I reach widowhood!  I've just been accepted to the Vancouver School of Theology.

My name is "Classical"

 Yesterday we had a visit from our beloved friend Marion.  She is closer to him than anyone else (besides myself) in Bend.  For over a decade, up to the start of the Pandemic, she would come over to the house almost every Friday, first to be instructed in Poetry, and then just to meet and gossip about life.  The meetings started when Marion wanted to learn more about WH Auden and Will offered to teach her.  After they'd read through the Auden canon, they went on to other poets. So her experience of him is as a fellow cranky person and professor.

We had not seen her for awhile (I forget when last she came over).  We were comfortable being unmasked.  At one point it seemed like she wanted to have a linear conversation with him with turn taking based on the same shared subject.  That's not happening now and I sotto voceed a warning.

He is able to sound like he is having a conversation.  His brain latches on to anything it understands in the previous conversational turn -- a word or phrase -- and responds to that.  So what he isn't doing is carrying a picture of the entire conversation in his head.  I'll take notes next time.

He went back to bed after she left and then got up around 5:00.  I asked if he wanted some dinner and he said yes, though he ate very little.  Then, after wandering around a bit, he said, smiling, that it was cold and he was going to bed.  I was smiling back and asked him, "Well, do you know who I am today?"  

He looked at the hoodie I was wearing and said "You are the Classical . . ."

And I stopped him.  I recognized that his tired old brain still knows that language carries clues and that the answers are almost always in the written word.  So he looked at the language on the person in front of him:  "The Classical Theatre of Harlem."  His brain to vocalization process made that the closest thing that made sense to him in response to the question.

 

Assignment: Self Care

 I'm currently enjoying a creative writing workshop with Nicole Meier - Author.  We meet at 9:00 this morning.  That means I have over three hours now to write a response to my short assignment from the other workshop member and Nicole:  to answer the question,  what do I do for self care besides sitting here in my wonderful office looking at the Deschutes River wake up in the morning?

I wonder why so many people need to tell me about self-care?  One of the first things dementia carers learn is the phrase, "You can't pour from an empty cup."  This means we need to pay close attention to our own needs.  So let me tell you, always being one to follow directions (she said with tongue firmly planted in her cheek), I've done what I could during these last five years to make sure that I took care of myself.  

 

This last year, as I became his Power of Attorney, I discovered we had some spare cash.  So I began paying myself handsomely for caring.  The first big purchase was a new car after our old one wouldn't restart twice on my way back from a trip to Portland to sell books.  I got a whole $600 courtesy discount as trade-in when I got a Subaru. I have also purchased a few too many boots and shoes, completely useless after March, 2020.  

But as fun as it is to purchase new things, consumerism isn't really enough for self care.  I've also hired a caregiver who gives me a "maid's night out" for three hours once a week.  I use this time to have a meal or walk with friends or go to my office and order in something tasty that I wouldn't order at home.

Well, I wouldn't have ordered at home in the past because he might not like it.  Right now I don't know what's happening with him.  He didn't eat dinner again last night.  I gave him a "snack plate" around 4:00 and told him Jen was coming but/and he went back to bed after consuming just a bit of what was on the plate (cut up protein bar, nuts, cookies).  Jen, our carer, comes for two hours on Monday nights to make him dinner while I am downstairs mentoring my EFM class on Zoom.  Last night, like two weeks ago, he didn't get back up when she invited him to dinner.  She made a sandwich and put it in the fridge.

So now I am free to order in Thai or Korean at home because I won't be needing to share my delivered meal.  Yippee!  Oh fuckityfuckfuck.  Sigh. My emotions are like basil and garlic in the process of becoming pesto.

Fortunately, my friends love pesto.  

 

What's Happening These Days

 Well, a couple of weeks ago I thought he was at death's door, that the Reaper would appear at any moment complaining about the way Americans talk.

But this last week, he was awake more, sitting up and looking out the window.  I'm not sure why there has been this difference.  He can still dress and feed himself, can still speak familiar complete sentences.  He actually washed the dishes again and put them away.  So somehow his brain has rewired itself again.  This is the crazy crash/revive journey of vascular dementia.  But he's losing track of his body...more peeing in his pants (though I still haven't had to change the latest sheets -- we'll see today).

I ask him how he is and usually he says something about his sniffles or  his dripping eyes.  When I put eyedrops in (with his permission) he flinches.  Sometimes the pain in his sitter returns (he fell three weeks ago, perhaps accounting for the downturn). 

He seems content.  Last week he knew me.  I don't know how it will be today.  He's still eating relatively little.

A Lot of Blood Under the Bridge

Lest I get too weepy at the loss of my longtime companion, let me share those aspect of himself that were not so admirable.  Perhaps if I keep these in mind, I'll appreciate his sweetness at the end more and feel wounded at his leaving less.

 

A.  Eternal critical view of the world.

He used to quote the pillow owned by Alice Roosevelt Longworth:  "IF YOU CAN’T SAY SOMETHING GOOD ABOUT SOMEONE, SIT RIGHT HERE BY ME." 

Since I have known him (1971) he has been proud of his "high standards."  For 33 years, these standards made him a really tough grader in an era of grade inflation, a choice he later admitted to me he regretted. They also seem to have made him critical of people and places as well, though in those situations, his cantankerousness might have been do to a life-long practice of kvetching.

A great example from five years ago (I remember because it was such an archetypal Will moment that I have replayed it in writing or orally several times).  We were driving down Newport Avenue in the spring with the trees budding.There were some clouds in the sky but overall it was a beautiful day.  So I said, "Look at the trees!  Spring is coming!"  And what did he say?  Yup, you guessed it.  "But I bet it will rain by nightfall."

Early in our relationship he turned his critical eye on me.  The first ten years, before I really grew up, we were as often miserable with each other as we were happy.  He complained about the size of my breasts ("More than a mouthful is wasted," he once said during sex.)  He never told me I was pretty or beautiful and I assumed that was because he couldn't lie and I was neither.  When I wrote poetry or fiction and showed it to him, his first words were always what was wrong.  (I stopped writing.)  After we were married, if I wanted sex more than he did he accused me of thinking he was a machine.  Because of my writing habits he called me Ms. Roughdraft and said I was "glib."

During and after our 7 years of semi-separation, I told him I was no longer willing to live with someone who used sarcasm and criticism on me.  So he stopped.  But he continued to use it on everyone else.

I remember one evening at a party he was going on about how awful a local chorus was to someone who was a MEMBER of that choir.  And then there was the time that he publicly yelled at the president of my college (who was then and is now my friend).

His constant negativity and his inability to manage it wearied me.

B.  Lack of self awareness

I asked him once why he exploded at people and he said he didn't know.  He didn't believe in psychotherapy.  He had trouble sharing his emotions even when he agreed to do so (during marriage counseling, for example.) He had no idea of the impact his behavior had on other people.  When I noted that sometimes he was so understanding and sometimes he was mean, he said, "Well, I'm a Gemini."  And I really think that's as close as he could get to a cognitive explanation of himself to himself.

C.  Lack of awareness and concern for others

1. a.  See comments above about the choir.  
2. b.  Throughout our life together I refused to go through shopping lines with him (he was the grocery buyer) because he would regularly make his face and voice angry as he complained to the clerks about high prices.  Because he had no self-awareness, he didn't know how his fierce eyes and face could be scary and offensive.
3. c.  A few times he managed to insult or annoy people with whom I worked, such as the event at the Bend Brewing Co. when, during a promotion celebration event, he started yelling at my big boss, the college president, who was hosting the event.
4. d.  Most importantly:  many times during our first ten years together, I would spill out my heart and soul to him, being deep and vulnerable and then ask him, "What do you think?" and he would say something like, "I think it's about time to plant the tomatoes" or "I should probably start dinner."  This behavior had the impact you might imagine it would have on a twenty-something hungry for love and acceptance. 
5. e.  The long polyandry vs. monogamy debate.  When I first met Will I was full of the concept of "free love" as written about by Mary Wollstonecraft and Lord Bertrand Russell.  He got into our sex life fully and completely just after I seduced him (I was 18 and he was 41).  I told him about who I was and what I believed and he seemed to acquiesce - at least he didn't argue.  The first blow to my belief that he understood me happened shortly after we first got together.  I flew back home over Christmas and had a date with my lover from the previous summer.  I happily told Will about it when I got back to Pocatello and he freaked out.  Eventually, he let me know that he didn't want to hear about it, saying things like, "You don't need my approval for things you do."  Our life went on from there but the argument was never settled, even though it went underground and then erupted again ten year on.  I asked him, some thirty years later, why he hadn't believed me when I told him who I was and he said, "I thought you were going through a phase."  {As for what I now believe, while I am a confessed Christian, I'm not supposed to support ethical polyandry but, well....}
   
6. f.  He could never figure out how to please me sexually. I think this was because he couldn't imagine himself out of his male body, could not imagine or understand female response.  (This gave more fuel to my side of the debate mentioned above.)

 
And there you have it.  The Bad Side of my sweetheart.  The Good Side - funny, warm, intelligent, handsome, sexy, loving - clearly overrode the bad side from 1990 on.  He would tell you, "I'm a Gemini."

L'Histoire de Bertrand

 Did I love him for so many years BECAUSE I misunderstood him?

Herbert Lom and Peter Sellers, New York Times

Or did I understand one part of him then and another part of him now?

Bertrand, Bertrand.  Sigh.  I give your name it's French pronunciation.  But is my accent that of Gigi or Inspector Clouseau? 

Lately a memory of our time in high school has been entering my consciousness sans bidding.  In part that's because our 50th is coming up in September.  Oh, Bertrand won't be there.  Oh no.  He is far too grand.  [Hmmm...that's an interesting phrase, "far too grand."  I'll wager it's from some movie, as so much of my discourse is.] And in part because it offers me a new understanding of who he has always been, the part of him I didn't see -- the typical, member of the American professional class, married no kids.

The memory is of a Saturday night when I got to chill with his "boys" and him, watching him clean some weed in a shoe box.  I remember being around all those guys and feeling like a guy myself, in spite of the fact that I was overly aware of my big boobs underneath what I remember as a heavy sweater. (Do I have this memory mixed up with the senior year Christmas caroling memory?)  I remember being happy and accepted with my identity, albeit invisible.  But what has occurred to me is the other aspect of that memory -- how highly heterosexual, butch, and professional class these guys were.  NOT the faeries.  NOT the drama kids.

And that is part of who he is.  And if I am to treat him with love as I am charged to do, I must accept that part of him is real, too. 

So, all those times when he has chosen to use language to shame me?  All part of his hunger for normality.  Ooooh.  As part of my "therapy" let me list a few things.

1. The time he and Mom both used the same language to criticize the sexual display of a dress I was wearing to a New Year's Eve party.  Generally acting that it's okay to criticize me using patronizing language
   
2. The time we were leaving a movie theatre with some friends of his and I was so excited that I immediately started sharing my opinion and he said, loudly enough so that his friends could hear, "you don't always have to share your opinion."
3. The time he told me that at one of his birthday parties, I acted in an extreme way, even for his friends (he told me this after the fact and after a long history of him pretending to be far more radical than he actually is)
4. The time he told me, after the fact, that I'd acted badly when I stayed with his people for a couple of weeks.  OK.  Here is an issue I have not only with Bertrand.  People expect me to know the rules for behavior without fucking telling me what they are!  I did not know that I was supposed to spend time with his family...only years later did he fucking tell me that I was bad.  And probably in response to some critique I made of him.  He has EGGcellent defense mechanisms.
   
5. He has a few times criticized my drug use - he who has in the past gifted me with drugs.  Sigh.
6. He has used the occasion of one of my previous lovers' deaths three fucking times to communicate with me and remind me of my past.  "Did you see this?"  
7. Present by its absence:  any response in the past to my desire to spend time with him outside either of our dwelling places.  I don't need that anymore but I sure did for awhile, while I was still too connected.
   
8. Present by its absence:  any interest in what I taught for 30 years that did not dovetail with his own interests.
   

  But all these behaviors become clear and forgivable when I realize that he has always been haute bourgeois in ways that I am not.  He has conservative, work-focused, perfection-focused values that I do not.  My mother was wild.  She was a tamed pirate, a person raised in a violent country who knew how to shoot and ride then brought to heel by marriage and her culture.  She gave me permission to be wild in ways she approved which were not always approved by society.  I was granted permission to be different from the others.  And though that difference cost me in friendships and self esteem, the understanding that difference was okay allowed and allows me a freedom that Bertrand may not have.  

And Will...ah, Will... because of his brain, I believe, Will was always different.  He grew up physically and mentally different from the rest of his family.  He understood himself as "eccentric" and that's how he understood me as well, perhaps.  Will used to say, "We have this treasure in an earthen vessel," quoting St. Paul.   Will is a wild thing, a different animal than Bertrand.  Will's brain works a bit askew.

Ah... and now let me own my own errors.  I haven't loved Bertrand as a full person.  I never checked in to his fullness.  And I occasionally rhetorically poked him to get a defensive response.  That is very unloving. 

It is my fault that I could not accept and just laugh off his criticisms as thoughts by any person.  Nope.  I took them far too much to heart.  I took them as rejections of who I am, rejections to which I gave validity because I had been so attached for so long. 

From Enduring Mind Counseling

Why haven't I wanted to give Bertrand room to be his full self?  I'm thinking it's because of my "ambivalent attachment style" which has, in the past, resulted in enmeshment with first my mother, then Bertrand, then Will and one or two others.  I struggle with my relationships because for at least fifty years, my boundaries were either brick walls (with most people) or jello (with those whom I "loved").  One of us, I don't know who, once said that the reason we never had sex with each other wasn't the prohibition against incest but the prohibition against masturbation.  We were so close.  We were enmeshed for a long time, or at least I felt enmeshed with him, thinking similar thoughts, laughing at the same things.

I have had trouble letting that go, letting our growing difference be anything other than rejection.  But it isn't.   

Bertrand est Bertrand et je suis moi.

Wonderful Friends

from the Wine Guys

 I am finally getting pastoral care from my church and my friends have rallied around, showing that they are here to walk with me till the end (even though they might get FUCKING BORED because it's so FUCKING BORING to be waiting for the Reaper.

Anyway, I was thinking about when I launched my book Sentenced to Venice two years ago.  I want to get back to working with it soon.  Promotion, you know.  The promotion that was sadly terminated by COVID.  No big deal.  I'll never make back the money I spent on publishing and promotion.  (And am STILL spending.  I bought a fucking page of next year's WSCA program.  It's happening in Portland, 2022.)  Anyhoo...that night at Dudley's when I was reading, people from my three primary support groups were there...the COCC group, the Trinity group, and the Skyhooks, my old poetry group. 

In the last couple of weeks I've received postcards and letters (requested in a despairing post on Facebook on February 8) and flowers.  So even though I need to walk the daily walk in the house on my own, I'm loved outside of the house. I now have more regular friendship connections.

You know, the thing about me is, I love to have rules and structure in part because I have a brain that works that way and in part because there was a certain amount of chaos in my mind and heart when I was growing up.  If I know the rules I can decide to abide by them or break them.  It's clear.  

But what are the rules for friendship?  They vary from place to place, time to time.  But at the core, I think, is a negotiated acceptance of behaviors and in some instances an unspoken agreement to help in times of trouble.  Like people and flowers, friendships have a life cycle which I didn't know about until recently.  I have felt guilty and angry for lost friendships rather than accepting that it's natural that disconnection happens.  

What I don't like is having people get angry with me for not following rules I didn't know about.  I also have learned to get out of "bait and switch" relationships -- friendships in which I am told I'm wonderful until I believe it and then I'm told I suck.  

My wonderful friends don't do that.  If they have criticism they say it straight out and don't wait for a moment when my defenses are down.  They love me in spite of (or perhaps because of) my occasional bursts of passion and my craziness.  

And maybe that's because I love and accept them.  One of my Mom's helpful sayings was "To have a friend you must be one."  As a recovering narcissist, I have to make a practice of keeping up and caring.  Oh, the feeling of caring is always there, but my practices are often lax.

The upshot is, I am very blessed or lucky, depending on whether or not my friend is a believer or not, to have people praying for me, bringing me food, sending me flowers.  I wish I could gift all dementia carers with my ability to reach out and ask for help.

Theological Reflection for Grad School

 I've decided I want to go to grad school when I graduate to widowhood.  I had to write a "theological reflection" for the grad school to which I'm applying. 

IS DEMENTIA EVIL?

A theological reflection by Karen “Kake” Huck

Submitted as part of the application for the MATS at VST

February 17, 2021

 

            A question often asked in the Facebook forums for family dementia-carers is, “Why would God allow this evil?”  In the spousal-carers forum to which I belong, people tell familiar stories about a once sweet beloved who is becoming an angry stranger, the once brilliant sweetheart turning into a staring ghost.  If we were to judge evil by its effects, then the claim that dementia is a great evil makes affective sense – it feels right.  I will briefly argue here that dementia is far from being an evil but might instead be a spiritual invitation to social change.

            But first it’s necessary to define the terms dementia, evil, and as President Clinton once notably said, “what the meaning of the word 'is' is.”[1]  Taking the last question first, what I mean by “is” is an indication of an equivalency or hierarchical relationship between the material existence and experience of dementia and the nature of evil.  If the “is” is understood as indicating a hierarchical relationship, then dementia would, of course, be considered an example of “natural” evil.

            I should say “dementias:” for there are, by some accounts, between 80 and 100 different types of dementia.[2]  And even within specific types, such as Alzheimer’s or Vascular Dementia, every patient is different.  In spite of this diversity of experiences, the World Health Organization notes that the syndrome involves “deterioration of memory, thinking, behaviour and the ability to perform everyday activities.”[3]  Some dementias, especially Lewy-Body. include hallucinations.  All dementias are fatal.  The losses and changes that occur either suddenly or infinitely slowly with dementia may create intense suffering for both the person with dementia and the carer.  Because a person with dementia may develop anosognosia – the brain’s inability to know that it is sick – sooner or later they may forget that they are different than they once were.  Thus, carers often feel the losses of dementia more sharply than those whose brains are dying as they are forced to take over all the tasks their partner used to perform, including finances, household care, or even child-rearing.  Carers meet these existential changes often while experiencing a loss of friends and family due to the shame and continuing fear and stigmatization of dementia.[4]  What caregivers wind up experiencing during the months or years of “the Long Goodbye” is labeled “dementia grief,” a mix of ambiguous and anticipatory grief that may include the usual trappings of guilt, rage, and despair.[5]  Consider that there are an estimated 50 million people with dementia world-wide and that most caregiving is performed within the family home, usually by daughters or spouses.[6]  The experience of dementia care is a universal and often gendered issue of unnecessary and excessive suffering.

            This suffering could be labeled as a “natural evil.”  According to theologian David F. Ford, ‘natural evil’ means the “pain, suffering, and death which come through diseases, natural disasters and other harmful sources.”[7]  Natural evil challenges theodicy because it’s difficult to accept that God is omnipotent and omniscient while at the same time omnibenevolent.  Skeptics like Michael Shermer find it impossible to combine the supposed goodness of God with the suffering that is part of the structure of the natural world.[8]  The very structure of creation, with its fearsome battles for survival and evolutionary thrust, is considered by God in the Tanak as “good.”[9]  What kind of a good God would create such a world? It is not my intention here to review the millennia of argumentation about theodicy. Instead I will look at my own experience as a dementia carer and try to extrapolate from it.

            My years as a dementia carer have broken my heart while healing my relationship with the rest of creation.  Because dementia care requires the ability to let go of what one thinks of as “normal life,” it may force the carer to develop the ability to be present to whatever reality is unfolding from moment to moment.  I have grown in compassion as well as in my ability to adapt to many challenges, including that of experiencing my own identity drifting  around just as my spouse’s does.  Dementia carers are forced to accept that the world they inhabit is unstable, unpredictable, and undependable.  Because of this, I have been forced to reach out to a greater community and to a more personal God.  And in turn, my community has wanted to reach back to me and in doing so they gain a greater understanding of the losses of dementia.

            On a much vaster scale, the worldwide experience of people with dementia can challenge everyone to love the Other more deeply.  The movement toward the destigmatization of dementias is growing, though as the World Alzheimer’s Report notes it lags behind the Disabilities Movement by thirty years.[10]  The city of Bruges even advertises itself as “the most dementia-friendly city in the world.”[11]  Even though motivations for this growing movement differ, all display love for the Other as a principle, for no one is quite as “other” as the person with dementia, the familiar and sometimes beloved become strange, the recognizable dropping into the uncanny valley. The existence of dementia worldwide is inviting all those affected by it into spiritual transformation, invited almost everyone, as I have been invited, into an intense experience of compassion and agapic love.  And it is Love that is our salvation.

 

           

           

 

 

---

[1] “Clinton's Grand Jury Testimony Part 4,” "from the Starr Referral" (Washington Post), accessed February 17, 2021, https://www.washingtonpost.com/wp-srv/politics/special/clinton/stories/bctest092198_4.htm.

[2] Snow, Teepa. “Teepa's Gems.” Oregon Care Partners. Lecture presented at the Teepa Snow Dementia Carer Training, July 7, 2017.

[3] "Dementia." World Health Organization, World Health Organization, 21 Sept. 2020, www.who.int/news-room/fact-sheets/detail/dementia. Accessed 17 Feb. 2021. "What is Dementia." Alzheimer's Disease and Healthy Aging, Centers for Disease Control and Prevention, 5 Apr. 2019, www.cdc.gov/aging/dementia/index.html. Accessed 17 Feb. 2021.

 

[4] Riva, M., Caratozzolo, S., Zanetti, M., Vicini Chilovi, B., Padovani, A. & Rozzini, L. (2012). Knowledge and attitudes about Alzheimer’s disease in the lay public: Influence of caregiving experience and other socio-demographic factors in an Italian sample. Aging Clinical and Experimental Research, 24, 509–516. doi:10.3275/8366

 

[5] Blandin, Kesstan, and Renee Pepin. "Dementia Grief: A Theoretical Model of a Unique Grief Experience." Demtia (London), vol. 16, no. 1, Jan. 2017. PMC, doi:10.1177/1471301215581081. Accessed 17 Feb. 2021.

[6] Mather, Mark, and Paola Scommegna. "The Demography of Dementia and Dementia Caregiving." PRB, Population Reference Brueau, 28 May 2020, www.prb.org/the-demography-of-dementia-and-dementia-caregiving/. Accessed 17 Feb. 2021.

[7] Ford, David F. Theology: A Very Short Introduction. 3rd ed., Oxford University Press, 2020, p. 70.

 

[8] Schermer, Michael. "Is the Reality of Evil Good Evidence Against the Christian God? Notes from a Debate on the Problem of Evil." Skeptic, vol. 24, no. 2, 2019, pp. 42-48,

 

[9] Genesis 1:24-25

[10] "World Alzheimer Report 2020." Alzheimer's Disease International, Alzheimer's Disease International, 21 Sept. 2020, www.alzint.org/resource/world-alzheimer-report-2020/.

[11] "What makes Bruges, Belgium the world’s most dementia-friendly city?" NBC News, NBC, 25 May 2019.

 

"Up and Down . . .

Up and down
I will lead them up and down
I am feared in field and town
Goblin lead them up and down."

    Puck runs around the stage as he says this, leading on all the characters in A Midsummer Night's Dream.  Dementia is like Puck but not so delightful.

    Last week I thought he was dying soon.  He stopped eating solid food except for cookies and bananas.  On Friday he ate only a cookie, a banana, and a half glass of juice.  I was crying much of the day.  And then, Saturday, heee's baaaaack.  He ate a bowl of cereal.  On Sunday he ate a full bowl of popcorn and some fish, sweet potato and spinach my friend LAL-F picked up for me at Zydeco.  Yesterday started well with a full breakfast and he snacked throughout the day but then he didn't eat dinner.  Last Thursday I took him out for a drive and he was very lively with Jennifer.  

I love him so much and still see him in this ancient wreck shuffling around the house.  My grief therapist asked me last week if I'd rehearsed in my head what I would do on the day he died.  I said, "yes...clean his body...stay with him awhile until I'm ready to call Hospice."  

So much crying.  So much laughing.

Here's an irony -- if I hadn't been with him to love him, he may have died some time ago already.  So, in some ways, I myself may be responsible for my own suffering because of my loving him.

stolen from Reddit User u/zBenet