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October is a beautiful month, but as it winds down and the bright colors fade, it can create a completely different picture.

On October 13, 2020, Tuesday last week, we had another Corona Visit (defined briefly, because it is brief, as a 15 minute protected visit. No physical contact, masks, plexiglass.) I posted a photo on FB today of Janis holding a bouquet of bright colored flowers I had ordered to coincide with my visit. Marilyn, the Administrative Assistant took the photo after our visit ended. Janis was having a down day today, late in the afternoon. As gray a day as possible, with showers. She did not interact much at all today, the visits are very quiet. At the end I was reluctant to leave, but there are others awaiting their own Corona visit, sooo…

UPDATE: I received a call a couple days after this visit from Janis’s brother who told me that they had heard on the news about the Virus getting into D’youville. It was late and I tried calling but it was busy. So the next day in the morning I called and the nurse (a recent RN graduate from U of M, who was one of Janis’s CNAs when I was visiting last year. She returned to work there as an RN, that’s the kind of Unit this is!) She assured me that the staff and vendors who contracted the Virus had no direct resident assignments, and the vendors also were not directly in contact. All residents have been tested and all came back negative. Janis’s Unit is clear. She also told me that Janis was having a good day and all her vitals are acceptable. She’s eating well and awake most of the day. I’m keeping this post brief but feel free to contact me via FB or my email if you have other questions.

“TO LAUGH OFTEN AND MUCH; TO WIN THE RESPECT OF INTELLIGENT PEOPLE AND THE AFFECTION OF CHILDREN; TO EARN THE APPRECIATION OF HONEST CRITICS AND ENDURE THE BETRAYAL OF FALSE FRIENDS; TO APPRECIATE BEAUTY, TO FIND THE BEST IN OTHERS; TO LEAVE THE WORLD A BIT BETTER, WHETHER BY A HEALTHY CHILD, A GARDEN PATCH ,OR A REDEEMED SOCIAL CONDITION; TO KNOW EVEN ONE LIFE HAS BREATHED EASIER BECAUSE YOU HAVE LIVED. THIS IS TO HAVE SUCCEEDED.” ~Ralph Waldo Emerson

 

 

This is the subtitle to the book ENTANGLED. I’m going to expand on the title here a little because, as it is currently with an editor I am allowed some time to think about this book without rereading it while it is being edited. It is meant to clarify not only the title of the book but also to edify the content in part to help folks to decide if they want to read such a book.

Of course, as anyone who writes or reads will tell you, you can’t know if you like a book unless you read it. However, I will tell you this much, I could’ve added a few more words to the subtitle, but I didn’t. (Four seems to be a goodish limit, doesn’t it?) The one word I got stuck on but decided Love was a better choice for the subtitle, was the word Compassion. Compassion is a more accurate word for the overall intention of the book expressing the theme that runs through all the years Janis and I were and still are together (together-apart). But, Love won out in the specificity of the narrower meaning. (Love-narrower? Really?) Love is less complicated. Not because love is not complicated, but it is a more popular term and generally understood. And it’s shorter. I’m going to give you something I read recently that gave me pause. I read it a few times and each time it set off more bells and whistles for me. I have often struggled to grasp why I would not accept the term codependency, as the book surely smacks of that. I’m not saying it isn’t real. But, in defense of those who discover that they live life compassionately: It is not weakness, it is, in fact, a strength. I think compassion gets a bad rap. After all, as a minimum defense for a somewhat complex idea, if all folks who love from a place of compassion were to be labeled as codependent, where does that leave the teachings of the profound spiritual leaders of our species? Jesus, Buddha, the Dali Lama, for starters. Don’t misunderstand this, I have worked in the helping professions all my adult life and I’ve met people who are clearly codependent, and I’ve met those I observed as sincerely compassionate. And there is a third category, of stupid-compassion. So…what do we do? These three different categories deserve respect equally as real phenomena. But, how to distinguish between them?

Here is a starting point:

“Compassion is a threat to the ego. We might think it is warm and soothing, but actually, it is very raw. (Italics, mine.) When we set out to support others, when we go so far as to stand in their shoes, when we aspire to never close down on them, we quickly find ourselves in the uncomfortable territory of “Life not on my terms”. ~Pema Chodron*

I am not going to portray myself as a compassionate person in all circumstances. but, I do aspire to be compassionate, life is hard enough and we need more compassion and I will add, more commitment, in our relationships. But the theme of this book is about those two ‘c’-words–compassion and commitment. And maybe a few others that didn’t make it.

Even setting aside the current political divide and racial issues (don’t get me started), just the general overview of life can’t help providing us with hurt and harm in the course of our days. We can think of hundreds of painful examples. But, that’s another topic altogether. Life is full of suffering at every level from a toothache, death of a beloved goldfish, fear (for example of various creatures, you know, spiders, snakes, bluebirds, or thoughts of losing someone we love, or other people-scary people, think Ted Bundy or Hannibal Lecter) and so on. . . . The extremes are the really scary ones like racism, or prejudice in other varieties, severe health issues, etc. And the bogey man of them all–death.

So compassion is the answer. ‘”All you need is compassion”, somehow doesn’t capture the imagination as Lennon and McCartney probably decided. Compassion means “Life not on my terms.” Sacrifice, patience, (Robert Louis Stevenson said, “Patience is the only true heroism.”), tolerance, commitment, compromise, sacrifice.

Marriage is a contract; love is not. when things are getting tough in any relationship, and maybe especially in marriage–certainly a long term commitment– it’s up to the one with the advantage to step up. Understanding is paramount, and taking a moment to consider what the other is maybe dealing with or any disadvantages they are carrying around in their life, requires compassion, even if it is a little risky. Or raw.

Whether we realize it or not, every choice we make in the course of our day involves some degree of risk, making a choice about which auto mechanic to trust, trying a new recipe–or more serious risks, allowing our child to walk to school alone, letting your child go out on a date (a biggy for those of us with daughters), or whether to disconnect life support for a loved one, flying cross country, or staying with an assaultive partner. (That last one is intended to cover stupid-compassion. Right?) You get it. Choices in all degrees include some risk. Stupid-compassion involves ignoring danger or loss because of fear. That’s a book, folks. But stupid compassion is, well, stupid.

Codependency is about fear or about stupid-compassion. Take your pick. Pure compassion is neither of these two positions. It is about a bond and a friendship. Respect for the other’s condition in this life. A commitment, for better or worse. And it is about love and compassion.

*Pema Chodron, fm Living Beautifully, Shambhala publications.

Mother, Night, and Water, Robert W. Chapman, available at Amazon.com/books

HOW WELL WE HAVE LIVED.
HOW WELL WE HAVE LOVED.
HOW WELL WE HAVE LEARNED TO LET GO.

~buddha

When I started work at Child Protective Services at the State of Maine’s Child Welfare, Dept. of Human Services in 1984, I asked one of the veteran workers who was retiring, if she had any advice. She waited a few seconds and then said, “Yes. Pay attention to the perfect parents. Look closer.” At first, I thought she was referring to ‘perfect parents’ as good role models, but as the conversation developed it was apparent that she meant to be suspicious of those parents who presented themselves as model, perfect parents.

I won’t pretend to be a perfect parent. Parenting is the business of people-making and we all want to be good parents, not just because of the undeniable truth of our love, there is another aspect to parenting, we also want to raise children to grow into responsible and happy adults. It’s an amazing thing to watch our children grow and develop their own unique personalities. But, while we are busy with our lives and our parenting is evolving without us always being cognizant of our parenting – we sometimes make mistakes. Still, resilient children survive the mistakes for the most part.

There is no such thing. No perfect parents.

Parenting is an imperfect business. We all make mistakes; have regrets; wish we had done a better job; that we were always kind; gentle; loving, and…well, perfect. Or at least reflect on our parenting and learn from that experience. I’ve thought about how much I learned from being a parent. Not just learned about a child’s development, but about my own development, I learned from my children how to become a better human being – parenting is not transactional, it is a pay-ahead kind of thing, and hopefully I was able to do a better job at parenting and to become a better person, as I learned from them. I loved being a parent of young children and having the opportunity to help shape their little world into something special. I was not perfect at this, life is messy and mistakes happen. But, overall I think I did pretty well. I love my kids and love being a dad.

But after nearly four decades of exposure to families and children in my work, I had to consider some brutal facts. Parenting is on a continuum. I met parents who were cruel and vicious, dangerous parents; and I met mostly good parents who were trying to raise their children the best they could, but struggled with the day to day life they were given, and I met parents who were good and balanced in their love and discipline toward their children. I’ve never met perfect parents.

The parents at the higher-end of the abusive continuum often ended up on a caseload at CPS and in some cases lost custody of their children because of an inability or unwillingness to be safe parents, some went to prison for causing serious injury, or death. There are statutes in Maine’s laws (in most all State’s laws. Did you know that animal abuse laws were in place before child abuse laws? In fact, the law to protect animals was a model in developing child abuse laws), that limit the rights of parents. These are laws designed to protect children from serious harm. Physical and/or mental harm.

There is a staggering body of research, hard medical science, that reveals the harm to a child’s developing brain, not just from physical/sexual abuse or injury, but from the psychological abuse that may or may not be accompanied by physical abuse. I’m not going to go into detail, it’s too much for this blog to cover. I will, at the end refer readers to sources where they can pick up some information and begin studying this unpleasant reality .

Child abuse is also on a continuum. There are plenty of nightmare stories, and yes, even here, in our communities, in our neighborhoods. And then there are also stories of parents who learned to change their circumstances and behavior through education and counseling. But Maine’s laws draw the line somewhere along this continuum because of parents being ‘unable or unwilling’ to safely parent their children.

I know this is a controversial subject in some circles, but the studies of the human brain from an abusive childhood are indisputable. As Robert Sapolsky, a biological neurologist at Stanford University states, “Childhood matters.” I describe it like this: If you hit your child to teach them, consider what would happen if you hit your neighbor because he was blowing leaves into your driveway – you’d be charged and stand in court for assault. After all, did you hit your child to teach them to walk? To teach them to talk? To teach them to read? (The law, in fact, allows for parents to hit their children – it’s a matter of degree. So in other words, children are not protected from assault as are adults). Children are natural learners, some preschoolers learn to speak two or more languages without being hit. If you hit your spouse because they burned the toast you’d have a situation on your hands.

So, who’s to blame? How does child abuse stubbornly continue to be a social and medical concern? Who’s to blame?

Excepting extreme conditions such as mental health issues in a parent, most people don’t wake up in the morning planning on becoming an abusive parent someday. But, regardless of understanding any conditions in the abuser, an abused child will suffer lifetime injury in varying degrees. And, there may be mitigating factors in their lives or in their genetic makeup. Something, or someone that enters their world and provides enough love or protection to compensate for the abuse. Other things, for example, how much abuse; how frequent; how serious the assault was; how young the child was when it occurred; any threats to the child or their family; and how long it continued without protection, are also factors.

Most authorities on this topic agree that child abuse is primarily a learned behavior. Of course, not all abused children grow up to be abusive, but most abusive adults were victims of abuse as a child. So…who’s to blame? _______________

Start your search for answers with:

1. Behave, Robert M. Sapolsky, Penquin Press, 2017.

2. ACE’s study: https://www.cdc.gov/Violenceprevention/Childabuseandneglect/Acestudy

~Journal/Diary entries are one part of a compendium that includes other text material. Diary sections of the book are not edited or proofed but are entered as-is from the original; usually written contemporaneously, or later on the same day. ~


8/17/18 Friday
I walked this a.m. at Bowdoin. Last night I drank two beers. I wasn’t thinking. (I guess that was the point.) It was stupid…what if I had been called in again? Here’s what happened yesterday, Thursday, 8/16/18:
I spent a lot of time watching Janis sleep, slogging through her day in a haze of infection, temperature, antibiotics, and the cocktail of her ‘regular’ medications. About 1 pm or so she was sound asleep on her bed. I sat reading a magazine, (I think it was one of her roommate’s lifetime subscriptions from her deceased husband who was an Army officer, Military Officer’s Journal, or something like that. She never looks at them, but they keep coming.) Several times I saw Janis wake up and I would get up to kiss her. At one point I looked up and she looked strange. I went to her and found her eyes rolled up into her head, her arms shaking. I ran to the hallway and grabbed Susan (CNA) she called out to the RN and came in and saw Janis in this condition. Her doctor was on duty and came in, but by then Janis was out of that seizure. The doctor spent much time explaining to me that she believed what Janis has is not Alzheimer’s, but Lewy bodies dementia.
Later that night I was struck by this entire past two weeks and this new diagnosis. It felt like another hit. And it certainly was, for Janis. I was grateful that Janis was likely unaware of what was happening to her. Waves of remorse and guilt for not seeing it for what it was and what she must have been going through during those years. The doctor’s notes describe her as in advanced stages of dementia.

(Just some things I jotted down out of sequence, some of these quotes, spoken at different times, from Janis that I didn’t want to lose. Some go back a couple years, but I want to get this into the notes: She said, “You’re a good man.” “I love you.” “I know you didn’t want to do this.” and later, “I loved him so.” (those pesky pronouns that get screwed up with dementia.)

8/15/18 Wednesday
Late last night (Tuesday) as I was getting ready for dinner and then to bed early, the PA from Janis’s Unit called me to tell me Janis was ‘unresponsive’.
I dressed and left within 10 minutes of the call. I contacted Bo and told him, but I also told him to call his sisters and tell them not to come in until they hear from me after I get to mom’s unit and see her. Cathi and Sonia showed up shortly after I arrived. Janis had opened her eyes, she smiled, we kissed, she fell asleep again. But the nurse, (J.) was encouraged. We were waiting for the doctor’s call. Her temperature was back up to 102. The doctor had called in to prescribe antibiotics. (They had ordered a urine testing for UTI earlier.) So today, Wednesday, she is groggy, sleepy, incoherent, but her temp is down.

8/12/18 Sunday Stayed home today.
I stayed in bed this a.m. for an hour on my laptop reading articles on Alzheimer’s Disease, and dementia. It was very striking to re-read the stages of AD. I have resisted being able to accept the diagnosis for some time. Knowing full well she has dementia. (Go figure.) But gradually and with sadness, I am more able to see the stages of her dementia, and familiar memories of what I denied/ignored. It makes me feel a kind of (entry incomplete.)

8/11/18 Saturday
Janis and I went to her room. I was very weary and tired. So, was she (still very sleepy)? Her bed was still unmade (unusual, but substitute CNA’s for vacationing staff). I climbed onto her bed, (I can’t lift her) a rubber covered mattress. I left her in her wheelchair and pulled her up alongside me. I jacked the head of the bed up to a near sitting position and we held hands. We both dozed off. When I woke, she was looking at me. I smiled. She made a little smile. I mouthed for her in case she still could read lips(!?), “I stole your bed.” I doubt she understood, but she patted my hand several times. An affectionate gesture. I got up and kissed her. Later when I got up to get her lunch, she took hold of my pants by the pocket and tugged at me. I leaned down and we kissed again. Then, went to get her some drinks. I cut her nails and brushed her teeth. Went outside to the Garden. Lots of water and fluids today. A long visit. 5 hours. Janis was tired but relaxed and in a good mood most of the time.

8/8/2018 Saturday Hot and humid.
Janis is sick today. The temp was 102 when I arrived at 8 a.m. It’s about 10 a.m. now; her temp, with Tylenol and a shit load of fluids, is now down to 99.8. I texted the kids. The doctor will be in to see her this a.m. I fed her breakfast, she ate pretty well, about 75%. I kept cold washcloths on her forehead. She sleeps now as I write this.

Note: Part 3 to LOVE IN THE TIME OF CORONA~coming.