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.