Little Happinesses Again

Lucas Favre on Unsplash

Yesterday he filled out and cashed a check for "cash" at the bank!  I felt so happy that he was able to do that!

We were out shopping for his Christmas present to me.  I had suggested earlier in the day that we would go shopping for my Christmas present he had checked for a credit card in his wallet.  I've cut up all but one of his credit cards and was worried that he would be upset but he wasn't.  He found the one card.  Later, before we actually went out (after he had a nap) he searched for his checkbook.  He couldn't find it but I found the stack of checkbooks and he took a new one out with us. 

When we got to Silverado I went right to the little box of nice, inexpensive studs and found some sparklies that I know I'll like.  I didn't want him to try and write a check there in the store because the gal might have gotten impatient with him and I hadn't brought my "dementia cards" with me.  So I gave him the $24 they cost and told him to have them gift wrap.  Then I walked around to look at other jewelry while keeping an eye on him.

And YAY -- he did it!  He paid the money and asked for the earrings to be gift wrapped.  At one point he got his wallet out and started looking at cards (having forgotten, I suppose, that he gave them cash) and I walked up close to the counter to monitor any errors.  But the clerk got the earrings into a box and into a bag.  Then we went to the bank where he filled out a check and got $70.  Why 70?  I don't know.  He doesn't have a sense of how much things cost anymore.  But I was so excited to see him do this old behavior.

Little Happinesses

Will, 1997

Just as there are little sadnesses, there are small happinesses as well.  These occur when he does something that I'd imagined he was no longer able to do.  We had one of those on Saturday night!  I was so happy.  I'd selected a documentary about Studio 54 for us to watch.  It was from Zeitgeist Films.  Will saw the word "Zeitgeist" on the screen and then he said, "Zeitgeist, Spirit of the Times."  I thought, at the time, that he was remembering the definition of Zeitgeist. 

Well, this morning I discovered that he was reading the definition off the screen.  That just burst my bubble and changed what I am writing about.

There have been other moments in which he remembers something I think he's forgotten.  And sometimes he seems so proud that he remembers -- his face lights up as he offers his memory like a little boy giving the correct answer to a teacher's question.

Yesterday one of the members of the church I joined last year talked to me about Will's approaching death and about how it would be hard for me and that she was there for me if I needed support and that I was loved.  I do my best to try and "rest" in God ("my yoke is easy and my burden is light") but that rest doesn't spare me the daily grief.

I wonder how long I'll grieve if I do survive this marriage.

Seeing Eye to Eye

Will and I can now see eye to eye on his eyes.

Rhcastilhos. And Jmarchn at wiki commons

On Monday morning we went to see the second ophthalmologist at Orion Eye Center, Dr. Laith Kadasi, a very handsome young fellow who worked kindly with Will, in spite of Will's occasional lapses in understanding. We saw him after the assistant had already done a bunch of views, including taking pictures.  The female assistant had trouble getting Will to put his head in the cup and against the headrest -- no matter where she put it he kept moving around and complaining about the bad design.

This is an aspect of his personality that is still recognizably Will -- his assumption that if things aren't working "correctly" that the world outside of him is at fault -- not him.  This is one way that he is like some members of my family of origin -- blaming rather than being accountable.  It's also a part of who he is that has had negative impact on me over the years because I am the opposite.  

Through most of my life my mind has struggled with a negative narcissism -- believing myself responsible for many of the bad things that happen outside of me, especially the sadness or anger of other people.  When I was a child in sixth grade I believed that all the tension I felt in our home was due to me and that if I died everyone would be happier so I started praying to die. I used to feel desperate when my Mom was sad and terrified when she was angry.  After my oldest sister's "explosion" into madness when I was in high school, I divorced myself from my family in my head and fled.  I fell in love with Will just nine months after our family's entrance into the tragic. And shortly after I fell in love I started responding to his facial expressions the same way I did to my Moms -- becoming scared when he looked angry, becoming desperate and unhappy when he was sad.

It took me decades to figure out that Will's emotions belonged to him and mine belonged to me.

But I am still highly reactive to his anger and sorrow.  And he was quite angry when he was at Orion on Monday.  He kept insisting on "NO SURGERY!"  

Fortunately, after the examination, the doctor agreed.  Not because the surgery would not be warranted were Will a younger man. The doc made sure I understood that so I wouldn't be going around telling people the wrong thing.

The retina in Will's right eye is indeed torn, but it was torn so long ago that there's a lot of scar tissue around it.  That makes the surgery so complicated it would have to be done in Portland at OHSU.  Well, the complicated nature of the surgery combined with Will's age and obvious disinclination to have surgery resulted in a recommendation of "watch and wait:"  keeping watch on the left eye so he doesn't lose sight in that one and keeping aware of any pain that could result from the shrinking or changed in the right eye.  He still has just a tiny bit of sight in that eye -- but just at the bottom.

Toward the end of the exam Will started talking about "Dr. Timm's mother" as being better than anyone.  I held his arm and said something to stop him from going off on that story -- maybe I said, "They don't know Dr. Tim," and I said something to the assistant, maybe "this is one of his stories."  This story is a fantasy.  It is based on a visit he took to the dentist during which an "older woman" cleaned his teeth (a woman in her 40s maybe).  He created a story that she was our dentist's mother.  Then in the telling she became not cleaner but a doctor herself.  I think this is because his brain was conflating Dr. Timm with an old friend, Dr. Richard Howard whose wife may also have been a doctor and whose mother surely was, as she was the famous Dr. Minnie Howard.

He has long done this -- made up stories.  It was rarely a game that I could play with him because I was usually far too serious and I didn't understand the game, but he's had other people in his life that he could play with.  Sometimes he would do voices when he made up the stories, hence his strange use of a Southern accent with the IRS agent back in 2010.  

So I am now sad about Will's lack of complete sight in his right eye but relieved that I will not have to either talk him into an unwanted surgery OR feel guilty for not talking him into it.

Opthalmologist Visit

photo by V2OSK on Unsplash

I was hoping I'd have more to report at this juncture because on last Friday we got another appointment for this week.  But the doctor's office called on Wednesday morning assuming, rightly, that after our big snowfall I would not want to take my sweetie out -- nor did I want to go ANYwhere that day.  So, only the one visit so far.

Turns out Will's eyes are more messed up than the Costco optometrist had seen.  He has a semi-detached retina in one eye and the other eye is also full of cataracts.

The visit didn't go as badly as it could have but he did use his harsh voice with both the nurse and the doctor and almost went off into one of his long stories about the past.  He also had trouble following directions, tilting his head when he was told to just move his eyes.  I had to hold onto his head at one point.  It was very stressful for both of us, I'm sure.  He showed his stress by using his angry voice when he told the young woman assistant that he was yelling at her because she was yelling at him (she was speaking loudly because he is so hard of hearing and had been saying, "what?").  Granted, she did have a rather grating vocal quality but that wasn't her fault -- just nature.  He also was fierce with the doctor and acted insulted a couple of times.  I sat there occasionally putting my hand on his arm and trying to get him to calm down. 

The doctor said that she wanted her colleague who has more experiences with retinas to look at him and she also suggested we go to Portland.  We'll see.  I can't imagine him at OHSU.  But I also can't imagine me taking care of a blind person.  But then, I could never imagine me taking care of anyone so miracles do happen.

Off to the Opthamologist

Still from L'Age d'Or

Well, I'm not looking forward to taking him to the ophthamologist today.  I told him we had an appointment and reminded him that he said he wanted to see out of his right eye and he immediately said, "I don't want surgery."  As a former film teacher he probably thinks of it as the scene from Luis Bunuel's L'Age d'Or (1930). 

I called them yesterday and warned them that he won't want to be there and that he doesn't like doctors (except for Dr. Thakur, his concierge physician).  I also told them I'm his Power of Attorney.  I've filled out all the "new patient papers" myself and signed for him.  I'll need to take the POA in along with those papers.

I am not looking forward to this appointment.  I don't want him to be afraid.  Today is just the examination.  His doctor is recommending that he have the surgery because he's extremely hard of hearing and right now he's blind in one eye and very cut off and it will make his life better to have the surgery.  But if he doesn't want to go somewhere there's absolutely no way I can push him out the door.  So we'll see what happens.

I've been sad much of this week and my tinnitus has been more annoying.  The acupuncture didn't work for me so I'll be trying some online activities next (head thumping) and also trying to manage my chi deficiency with herbs.  As Roseanne Roseannadanna used to say, "It's always something.  If it ain't one thing, it's another."

The Devil Finds Work

Is the Devil in the details?  Does the Devil find work for an idle mind?  Is grief devilish?

My view

The weeks that I was busy promoting my book and preparing for my various ministry activities I didn't have time for grief.  Now this week seems slow and devilish.  I felt sad all day yesterday in spite of the 100 mg of sertraline (generic zoloft).  Maybe because instead of coming here to my office above the river, I went to Les Schwab to have my tires put on.

But I'm now looking out on the dark Deschutes slowly turning silver and seeing the car headlights slip down Reed Market Road as the red lights slide up.  There's something about this view in the morning and the sight of these cars on the hill that touches the place in my brain that vibrates with nostalgia.  The cars in the semi-dark of approaching dawn remind me of travel, of all the places I've been, of all the places Will and I have been together. 

Will these memories make me sadder?  Lead me to hunger for numbing through food or drugs?  Is that devilish?

I miss my husband as he was.

Numbing

I'm sure I used to have a button like this one when I was in college.  I would have gotten rid of it, however, after I was busted for trying to carry marijuana onto a plane in 1972, the very fist year of required security screening of passengers.

I wound up spending all the following year's school money on paying off the lawyer who got the charge reduced from a felony to a misdemeanor.  Since then my relationship with the "weed with roots in hell" has been an off and on thing.  I was never high on the job, whether I worked at McDonalds, as I did in 1979, or at the University of Utah.  But I did enjoy a weekend high or the occasional one week blowout to shake the dark stuff of reality out of my head OR to deal better with it.

 A typical one week blowout during my working years occurred in 1980 when I was staying with a friend's folks near Santa Cruz, California.  I remember one night eating pasta at the bar of a restaurant near their house and watching Ronald Reagan accept the GOP nomination for president.  As I listened to him in my altered state of consciousness (which increased my ability to recognize powerful rhetoric, and I said, "Well, he's going to be the next president of the United States."  And it didn't bother me.

Sadly, my occasional use turned into a problem with the "perfect storm" of Will's failing brain, my retirement, and legalization in Oregon.  Occasional use turned into every day then, over time, a couple of times a day, then all day.  This didn't happen all at once.  I started a business and took some web classes.  I got free training in dementia care through Oregon Care Partners.

But I kept falling into the addiction cycle of relapse and recovery. I recently listened to a wonderful book by Leslie Jamison that explains this cycle:  The Recovering:Intoxication and Its Aftermath. 

I have, since the first time I got high in 1971, used weed because I liked the experience of the high -- the insights it gave me into the power dynamics of the world, the release it gave me from always having to care, and the simple experience of enhanced physical pleasure.  But beginning in 2014 I was using it to escape my reality, the everyday complicated grief of the long goodbye of dementia.  I allowed myself to be triggered into smoking or vaping every time Will told the same story three times or put dishes away in the wrong place;  every time the slow dissolution and approach of death appeared in front of me.  In spite of the warnings of my therapist, I was numbing myself, not "being present to my grief."
I used to hate that concept.

I'm in recovery again but, sadly, I've noticed that I am drinking too much -- and for me that means having two drinks a day.  I have one with dinner and one before going to bed. The one I have before bed is one of those "drinking alone" things -- not a good sign.  I'm not happy about this.  I know I "should" be distracting myself with something else that's fun but so far it's been difficult.
Not to put too fine a point on it, but I'm not all that good at living with the grief from day to day.  There's only so much heartache I want to carry.

by Dan Meyers on Unsplash

Fortunately, I am working again, facilitating a ministry course for my church.  And I'm writing this blog.   And promoting my new poetry book.  I'm keeping busy.  I hope all these activities help me better resist the sometimes overwhelming temptation to numb myself into happiness.

Depression, Dementia, and a Buddhist Thought

Back to the book Caring for a Loved One with Dementia by Marguerite Manteau-Roa.

In her chapter on "Clearing the Mind" she asks us to watch out for depression both in ourselves and our loved one.  I myself have a biological disposition in that direction and so for decades have taken SSRIs in the winter months.  I'm on them all year now because the grief that is part of dementia care hangs around my biology and weights it toward melancholy and despair.

The author offers a shorthand depression screening (p. 106) and asks the carer to make regular self-checks on our cognitive state.  She also suggests that we tell a good friend about the warning signs of depression so that we have someone looking out for us.

She offers "Six Ways to Prevent Depression:"

1. Get enough sleep, exercise, and eat well.
2. Socialize; do not isolate yourself.
3. Force yourself to be active, even if you don't feel like it
4. Put some structure into your days.
5. Recognize negative thoughts and try to cultivate healthier thoughts instead.
6. Be on the lookout for warning signs and get professional help early.  (p. 110)

I'm hip to five of these methods but I dislike #5 -- I'm not sure that "positive thinking" is all that helpful for dealing with the mix of complicated and anticipatory grief that is part of dementia caregiving.  But more on that in a future post.

The part of this chapter I like the best is it's insistence on recognizing reality.

"Sooner or later your mindful journey through dementia care you will be faced with the wall of the reality of life's impermanence." (p. 122)  Then she offers this Buddhist contemplation that we can think on to help us accept what so many people in dominant America culture try to refuse.

Buddhist Contemplation

by Benjamin Belazs on Unsplash

I am of the nature to grow old.
I cannot escape growing old.
I am of the nature to become ill.
I cannot escape becoming ill.
I am of the nature to die.
I cannot escape death.
Everyone and everything I love are of the nature to change.
There is no way to escape being separated from them.
There is no avoiding mistakes.
I am doing the best I can and I hold myself with compassion.

Little Sadnesses

photo: Priscilla du Preez on Unsplash

Each day has a little sadness, un peu de chagrin.  Reminders of what is lost.  Reminders of what we'll never do together again.

I've told you about the loss of travel -- and now that I'm promoting my new book, Sentenced to Venice, I'm aware of that loss every day -- of all the beautiful moments we experienced together, of our perfect fit as traveling friends, him making the schedule as I figured out how to get to the museums, restaurants, and hotels.

On Monday evenings I facilitate an Education for Ministry class at Trinity Episcopal Church.  Each week when I return home and say, "I've been in class," he asks me, "What class are you taking."

I say that these are "little sadnesses" because I have accepted our current situation -- "it is what it is."  Thus, I can be happy and feel blessed for its positive aspects -- that he is sweet and in a good mood most of the time and not difficult to care for as yet.  There was a time in the recent past when every one of these little knocks would spin me into getting high and I became addicted to weed.  I'm now in recovery though I still miss it.

But every so often these small sadnesses accumulate into a great grief for all the losses and I have a good, long cry.

Nicci Gerrard and The Last Ocean

If you read just one book about dementia, it should be this one.  For you dementia carers out there, I think this is the best book to give your friends, relatives, and strangers walking down the street a clear picture of your experience.  Originally published in the UK under the title, What Dementia Teaches Us About Love, The Last Ocean is a brilliant mix of memoir and reportage.  Gerrard's writing is poetic and her research thorough and thoughtful. 

The chapters of the book focus on different aspects of her personal journey with her father's dementia as well as a more general experience of the trajectory of dementia.  The book moves from "Facing Up" and "Getting older, through issues related to "Shame" and "Connecting through the Arts" to "Saying Goodbye" and "Death."

Herewith are some sections I marked in the copy I purchased as soon as I read The New York Times interview with Nicci Gerrard:

About researcher Dr. Ezekiel Emanuel, "As a doctor, Emanuel has seen too many people holding on to life at all costs, until it is a ragged, tattered, excruciating thing." (p. 38)

"To be human is to be dependent; this isn't a weakness but a necessary condition of being alive . . Decline is part of who we are; we are always impermanent, always growing towards our end, and old age is part of what gives life its necessary boundary and shape. . . If life is an adventure, old age perhaps demands the most courage and endurance."  (pp. 40-1)

The chapter on being a carer was especially meaningful to me:
"A woman who has been a wife for fifty years (or of course the man who has been a husband), . . . finds herself taking on the tasks that used to be his, making decisions he used to make, taking over the finances, covering up for his slips. . . . she tries not to become impatient when he repeats himself -- or shows her impatience and then feels guilty. . . . She tries not to mind that what she does, day in and day out, is unseen, unvalued:  nobody to see her or tell her she is doing a good job.  She tries not to resent the fact that she is giving up things for a person who doesn't understand her self-relinquishment." (p. 116)

"The writer and professor of nursing Sally Gadow believes that caring is the process of entering another's vulnerability and brokenness and 'breaking oneself.'" (p. 119)

"For surely the endeavour -- the never-quite-possible endeavour -- for a carer is to tread the quicksand strip of middle ground between the abandonment of the self in the name of love and duty and the unyielding protection of the self in the name of survival. . . . To have courage, stamina, compassion, empathy, to be in it for the long haul and yet not to be wrecked to the point of self-extinction." (p. 122)

"Dementia is a particularly long farewell to the self. . . . There's an anticipated, ambiguous grief; a premature mourning of the self, or of the beloved other. . . .To mourn someone who is still alive brings a particular, complicated pain." (pp.207-8)

Optometrist Visit

Photo by Anne Nygård on Unsplash

As I've said before, Will dislikes doctors.  Therefore, I didn't tell him about the trip to see Costco's optometrist until the morning of the visit.  (He wouldn't have remembered me telling him anyway.)

Why did we go?  Because our concierge doctor had performed a quickie vision test using her cell phone and said that his vision was quite poor and it might help if we went.  (Dr. Thakur is part of Integrity Wellness and is a wonderful, kind, friendly, not-at-all-doctory physician.) 

So he got dressed (wearing the long sleeved shirt he's been wearing for several days) and put on his tweed sport's jacket instead of one of the cardigans he always wears.  Then we went to Costco's optical department where I checked him in with the doctor's receptionist.  I filled out the form, knowing he wouldn't be able to do it very quickly.  I asked him some questions about his family's health and he remembered a bit.  Then I briefly explained the privacy rules -- mostly because he would be signing he form that agreed that he'd understood them.  (Oh, so many prevarications when managing dementia.)  When I returned the form I told the receptionist that he had dementia and she said she'd tell the doctor.

Then she suggested we look over the frame options while waiting for the "independent optometrist," Dr. Jones. 

Will told me, "I'd like to use my old frames."  I explained to him that it would probably take a week or two to get the lenses in his new glasses.  He had already told me about his desire to use his old frames on our drive over.  I had already explained to him that he couldn't be blind for a week and that that we could buy two sets of lenses but that he'd probably have to wait for a week to have the lenses installed in the old frames.  So there I was explaining again, all the while remembering that he couldn't "do" logic anymore and wondering why I was explaining.  Force of habit?  Respect?

So I said, "Would you like to look at frames?"  He just sat there staring.  Now, that wouldn't necessarily be part of his dementia as often in the past he would shut down and go silent when he didn't want to do something.  I explained again about the two lenses and the time.  Then I asked, "May I bring you sample frames?"  He gave a short nod.

So I brought over frames that looked as much as possible like his old wire one.  His old ones have cable hooks that go around his ears and of course none of the Costco frames did.  He kept shaking his head until I found one pair which didn't cause him to shake his head immediately.  I put that one aside. 

Then he went in for his examination and I waited outside, looking at frames.  When he came out, the doctor called me over and told me that one of his lenses was actually currently too strong.  Then he told me somewhat surprising news -- that one of Will's eyes was almost completely occluded by cataracts.  He said he would be happy to give a referral to an ophthalmologist, but that "it might not be the right thing at his age.  You can think about it."

We then took a number and waited for the lens-crafters to serve us.  The gal who did looked at his old frames and said that Costco couldn't replace the lenses in them because they'd be torn up by Costco's lab equipment which processed "around ten thousand glasses a day."  She also noticed a rough place on the edge of the frame that was cutting his skin and suggested I put a dot of clear nail polish on it.  She recommended we take the old frames to one of the places where the lenses are hand ground.  Then she looked at the frame I'd chosen and noticed that it was too large for his head.  She found another one that was round and the same size as his old glasses.

He sat patiently while she fitted the new frames that he didn't want.  He complained that they were made cheaply.  I tried to assure him that the titanium was strong.  (Complaining about the cheapness of something is an old habit.)  Then as she did other works he kept pulling his wallet out of his pocket, trying to find a way to pay (I've cut up his credit cards so he wouldn't have found them anyway.)  He'd done the card removal previously as we waited for the doctor -- pulling his wallet from his pocket twice, each time taking out his medicare card and holding it.  Each time he did, I explained that the service wasn't covered by medicare.  (Which is one reason we were at Costco!)

As for the occluded eye:  I've put the question to spousal dementia carer Facebook group to which I belong.  Some folks say yes, have the surgery and some say "no," don't have it.  I will now contact Dr. Thakur and ask for her advice.  He was reading last night and I asked him if he could read okay and he said, "yes," but then, he has a history of telling "therapeutic lies" himself to save me and himself from "more trouble." 

It Isn't A Stairway (to Hell)

by Heidi Sandstrom

When I first started reading about dementia back in 2013, I wanted to understand the prognosis.  Various websites told me that vascular dementia followed a progression of stair steps.  For example, this note at Dementia Care Central: "Symptoms of vascular dementia may have a sudden onset if they are related to a stroke or mini-stroke. People with this type of VaD, sometimes called multi-infarct dementia, have a so-called “stepwise” progression of their symptoms, meaning that their symptoms stay the same for a while and then suddenly get worse."
And this from the Mayo Clinic:  "Sometimes a characteristic pattern of vascular dementia symptoms follows a series of strokes or ministrokes. Changes in your thought processes occur in noticeable steps downward from your previous level of function, unlike the gradual, steady decline that typically occurs in Alzheimer's disease dementia."

Well, it ain't necessarily so.
I discovered that decline is not always completely declined.  Sometimes the person with vascular dementia takes a step up -- the brain finds a work around.  This can be disconcerting.  He may be able to do something one day that he wasn't able to do the day before.
I found in my caregiver's forum that I'm not the only one with this experience -- that people talk about their spouses going from stage 4 back to stage 3.
For example, three days ago Will didn't read anything all day.  He just sat and watched the world out the window.  Then, last night, I came home from the church movie I host and found that he was reading away and he continued reading until after 9:00 pm.
There's also the experience of the person with dementia being "on stage:"  being able to rise to occasions and perform more normatively in front of others, like doctors.  This can create issues for people who are trying to get a diagnosis in order to make their shared lives function more smoothly. 
Dementia care central is correct, however, in saying that the unpredictable "stepwise" progression, whether or not it continuous or shifty, "can be a challenge for caregivers."

By Priscilla du Preez

The dementia journey can be more like a roller coaster than a walk down the stairs.

His Emotions

"Me, me, me," I hear you cry.  What about his grief?  Isn't he the one with the horrifying condition?"

Blessedly, he no longer seems terribly troubled by his losses, though in the early stages he often expressed his sorrow through explosive verbal rages.  But these behaviors weren't odd for him as for most of our lives together he could be explosive and angry in public and private.  Most often with me, however, he would express his anger with a scowl and silence, appropriate for a member of the Silent Generation.

When we first got together I couldn't predict his future behaviors.  I fell in love with him one night in December, 1971, when he cried in front of me.  There was a force in me that wanted to salve his sadness.  I later learned that this openness was an anomaly though I was already bound to him with a connection far deeper than conscious awareness.

Early in the dementia he fought with its effects, protecting his ego as he has all the life that I've known him, with his fierce countenance and an angry voice.  And before I understood the damage the transient ischemic attacks were making in his brain, I got angry in return.  I yelled when I returned home from a day out after the washing machine flooded its room.  I argued with him when he constantly criticized the world and people around him and when he found the negative side of everything.  I criticized him when he was mean to people in public.

But once my previous mental health therapist observed that Will probably had dementia I began to get training and learned about the condition.

But first, a pause to explain what I mean by "condition."  Dementia isn't a single disease.  It's an encompassing term for a whole passel of diseases that result in a loss of executive function.  I've heard and read from a variety of sources that there are between 50 and 100 different types of dementia.  What Will has is Vascular Dementia -- the brain slowly dying from tiny arterial explosions. The best trainings I received were free through Oregon Care Partners.  I was blessed to be able to spend a morning and afternoon at a Teepa Snow presentation in Salem. From her I learned the "positive approach to care", which focuses on the importance of entering the world of person with the condition - to be with them wherever they are and to value what they can still offer to the world.  Here you see a photo of Teepa explaining how the person with dementia's vision is gradually reduced.

Teepa's teachings were echoed by some of the books and articles I read.  The most important concept is acting with compassion - providing a living space of comfort and safety and, if possible, significance.  There are still activities that Will can perform that help out around the house.  He now does the washing up.  He has always enjoyed doing the laundry and now, with my cues, he still does it, though usually he is more likely to hang up the clothes after I've put them through the wash cycle.  We still walk the dogs together in the afternoon.

So he still gets sad sometimes, I think, but he rarely admits to it when I ask him if he is.  He seems to be in a good mood most of the time even though he still dislikes Bend and Oregon and doesn't miss an opportunity to articulate his belief that almost anyplace in the world is better.  With the exception of encouraging him to do chores on occasion and walk outside with me, I don't make him do things he doesn't want to do.  I let him sit or nap if that's what he wants to do.  

I feel blessed that he has become sweeter as the condition has progressed, rather than getting angrier and meaner.  It's made my life as a carer and his life as an aged boychild more tolerable.  

And I also feel blessed that this journey has taught me to be less self-involved and narcissistic and more compassionate.  I have found that caring for Will has made me more caring for other beings in the world.