The Perfect (Brain) Storm (part one)

There are two bodies of work that I want to present at the beginning of this post, and if I can figure out how, I will attach a couple of links for those interested in looking into this a little more.

The first is a huge body of research by Vincent Felitti, MD, with the Kaiser Permanente Medical Care Program in San Diego:  Turning Gold into Lead, The Relationship of Adverse Childhood Experiences to Adult Health (ACE Study). I met Dr. Felitti at a training workshop several years ago. Later, following the publication of my book, A Certain Fall*, he invited us both to a workshop in Bangor, Maine. I introduced him to Janis. We spoke for a few minutes about her history and the ACE Study.

The second is a recent book by Robert M. Sopolsky,  professor of biology and neurology at Stanford University.  BEHAVE, The Biology of Humans at Our Best and Worst. A book that covers, as the title states, biology, the nervous system and the impact of child abuse on the brain and physical health of humans. This book, though a little challenging (kinda technical and immensely detailed in places) is a humbling and sobering look at what happens to the brain and bodies of children suffering abuse. And coupled with Dr. Felitti’s work, and my own thirty plus years in child welfare, jolted me, when I understood what I had intuited all these years with Janis: she suffered The Perfect (Brain) Storm.

As I continue to work on Entangled, I sometimes get lost in the 50+ years of our lives together. Adding to that, the theme of the book is not just a biographical text, but a text that describes how Janis fought back against the darkness, the fog of depression that covered all  her days, the courage, the determination it took to get through her daily life. And in the end to leave her home, her two cats, her trips to the sea collecting sea glass, her family, and enter a locked unit to wait…

So why write about this? Really. It’s depressing. Why? Because Janis wanted to help others. She held a deep compassion and empathy for victims (including all wildlife and domestic animals. I’m still wading through all the mailings, magazines, and materials she subscribed to. Anyone need a free wildlife calendar? Or maybe some cute kitten stickers, address labels? Wrong address a problem?) She and I hoped that by sharing about her life it may help, even just a little, to build an awareness of the significance of early childhood abuse and the disastrous effect it has on our society. I’m convinced that if we can find a way to end or at least diminish the prevalence of child abuse in our culture, hell, all cultures world wide, it will make life a little sweeter for all our children, but as Felitti and Sopolsky attest, it may solve most of society’s problems: physical and mental health, addictions, violence, etc.

These posts will promote both of the above texts and point out some of the findings they have generated. It is an education worth pursuing.

Okay. Now how do I link you to some data sites?  Hmmm. If all else fails, check my Facebook page for a link to any sites that carries information on the ACE Study.

* A Certain Fall, published in 2005 is now out of print, I will be revising and updating this book for a new edition. There may be some old, early editions available as used books via Amazon.

http://www.robertwchapman.com / FB: Maine Novels by Robert Chapman


 

 

 

 

 

 

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Entangled

I’m slowly making progress on this work. I still have only a loose idea of the structure the text will take. I am subtitling it A Compendium Of Us. For now, anyway. I will attempt to work more on this Blog as I work on the book. This entry is taken from the Introduction.

Entangle.
I was surprised when I looked up the definition to find mostly negative sounding definitions for this word. For example (hard copies, of course) Merriam Webster Dictionary: tangle, confuse. I went to Roget’s 21st Century Thesaurus 2nd edition: bewilder, burden, complicate, puzzle, interweave (less negative), intertwine (better). When searching for a word that somehow grasped the nature of our relationship for a title, I selected entangled, because I understood this word as a mostly positive term. I view our life, my life with Janis, together as something like braiding or weaving, ancient-sounding terms that seem, strong, gentle, loving, and sharing. I understand this is a romantic portrayal, and I am aware that it also has its shortcomings. I also considered symbiosis as a title. However, it sounded too perfect, a botanical-sounding term (“mutually beneficial”) that left little room for the imperfections (not always mutually beneficial) that occur in any long-term relationship. So,in my definition entanglement embodies mostly positive elements, with the understanding that there is always room for human missteps.

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Journal Entries from “ENTANGLED”

[Journal entries are nearly all written contemporaneously  during visits while Janis sleeps, or shortly after leaving her. I confess that I am reluctant to include the really unpleasantness of some visits. For example, when she has been encopretic, and needs to be cleaned up and changed, or requires a shower. Her behavior is extreme and distressful. And though I’ve tried to deal with this myself, it requires 2 people to safely attend to her.  And the emotional level is unbearable. I now let staff handle this. I leave the area so that I can’t hear her. Nevertheless, I will attempt to be as candid as I can while respecting Janis’s dignity, for the sake of presenting an honest presentation of dementia. Of course, when the book is edited some entries may not gain entry. As I have said before in other places, with the writing and publication in 2005, of A Certain Fall, and the training modules that we conducted, Janis made it clear that she wanted her experiences with trauma to be of help to others where possible. So I work on Entangled with that in mind.]

For you Janis. I love you.

 

5/19/2017 Friday

Yesterday, my self-imposed day off, it was 95F. and humid, and nearly that in the apartment. I installed the AC and ran it all day. Today it is 80F. I am at the unit with Janis now. The power went out here just a minute ago. I got up and checked doors (fire doors release when power goes off). Staff were hustling but did not seemed overly concerned. I went to the Nurse’s Desk. They were checking, but no answers yet. All seems okay. We will wait for a few minutes.

When I found (power just came back on) Janis this a.m. she was curled up on someone else’s bed. Not unusual. I went to her room and dropped off my stuff. When I returned to the room she was napping in, she was standing, back-to-me, staring at the room and appearing a little confused. I touched her shoulder, she turned and burst into a smile, she hugged me and mumbled something incoherent. We kissed. She called me by name,”Bobby.” First time in a long while that she has used my name. Later, we went to lunch back in her room instead of the Dining Room. This is private time for us, although we sometimes eat in the Dining Room with the others when Janis is inclined. After lunch, (roast chicken with gravy, mashed potatoes, string beans, yogurt, pie, and drinks) she looked up at a photo on her wall that came from our living room at home. It was something she had put together in a frame. A picture of me and her at about the ages of 9 or 10 on either side of a photo of our three children, Stacia, Bo, and Maya. I always liked this framed capture of our children between their 2 parents as children. Janis had a real talent for creating something special out of ordinary objects.  I took the photo down and handed it to her. She tried to express herself: “This is (moving her hand across the photo)…this is, all of it…Everything!” She was matter-of-fact, not emotional. She seemed to want to convey to me that this was important to her. Later on, as she started to doze off, I leaned close to her and mouthed (“I love you.”), “I love you too,” she whispered. A small smile. This was more talking than she had made recently: a random moment where the neurons fired someplace in the correct order.

 

6/10/2017 Saturday. Hot and Sunny.

Janis had a major yelling, screaming, fighting battle, while being cleaned and changed. I could hear her down the hallway. I cringe when this happens. I had tried to attend to this myself in the past, thinking it would be easier for her. But, it doesn’t matter who takes care of her at these times, she is in a full blown panic (PTSD) attack. She is assigned two very good female CNA’s now, (it takes 2 people).

I met Janis as she walked out of her room. Crying her heart out. I grabbed her and she clung to me. “I don’t…I don’t…my husband…” She weeps, then, “I can’t do this. I can’t do this.” A refrain since she was placed. It leaves me weak in the knees. I held her to my chest, stroking her hair and speaking directly into her left ear (no hearing in right ear and questionable hearing in her left), I speak loudly into her left ear, “You’re okay. I’m here. I will always be here. I won’t forget you. I won’t lose you.” Later, after she had calmed, I held her and we slow-danced easy and with familiarity, while I sang You Are My Sunshine directly into her left ear. She Beamed! Her whole mood changed. And later, we watched an old B+W Mickey Rooney and Judy Garland film and she laughed at least a half dozen times, loved the choreographed dance scenes. A little more verbal. Ate a full lunch today.Walked the hall a little for the exercise. She tires easily. Her gait has changed dramatically. She has trouble with stairs. Her steps are child-like and weak. She went to bed in her room. I stayed and held her hand until she was asleep. I left.

6/15/2017 Thursday

There’s a Team Mtg later today. I visited Janis before the meeting. She is very sleepy lately. Sleeps much of our visits away. But I hold her hand. Today, I crawled up onto her bed beside her to rest. I’ve been very tired all week this week. I spooned with her, and I fell asleep. I awoke holding her close. We had slept for at least a half hour. We had cuddled and slept together for the first time in 2 1/2 years.

Notes from the Team Mtg. : No changes in her meds recently. She has been off  the anti-psychotic med for sometime now and doing okay. Her kidney is still at stage 3. No significant change. Thyroid okay. She weighs 134, gained 1 lb from last month. Mood has been better. Doing better at her regular shower periods. But still panics when soiled and cleaned. Her morning washing and dressing has been less contentious. Good appetite, esp at breakfast. Lost a lot of verbal interaction. Almost non-verbal. Her gait has deteriorated to a very slow pace. Sleeps a lot.

~      ~      ~

[The book I am attempting is titled ENTANGLED. It is a compendium, subtitled: ‘All That Was Us’. I am struggling to find a format that makes some sense. It will include some journal entries, some biographical material, some thoughts and essays on related topics, some poetry, excerpts from Janis’s journals and diaries, and some of her miscellaneous notes. The cover, I hope, will be a painting of hers that I consider one of her best. It’s titled SIX LEAVES, and its simple beauty is its charm…much like the artist herself. ENTANGLED will be self published through Create Space at Amazon. ]

website: http://www.robertwchapman.com

 

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TIME.

 Time.

In the Memory Care Unit that Janis is in, I have met numerous residents and have learned something about their previous lives. Always, I’m interested in what they did for work. There is so much to be said for what careers or jobs these people spent their time on. It gives me pause to think of the time that we spend in this life. It becomes more apparent to me that we are what we have done. Not just in our work, but also in our daily lives. Time is the real currency. And the rules say we can’t earn it back by working overtime later on. We only get this one moment to live, just once, and then it is gone. Sort of like having a pocket full of change in life’s arcade. Spend it, because the rules say you cannot save it. And remember, that what you spend it on, says something about who you are.

So what will you spend your change on today?

A wise, but brooding and serious man once said, “Do not waste this life.” I suspect he lived in ancient times and likely was a monk.

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November 3, 2016 · 7:12 pm

“UNTITLED”

do you remember

our first kiss?

me walking you home

holding hands beneath shy stars?

do you remember this?

 

do you remember

our small farm in winter

blanketed in deep snow?

in spring? in summer?

peepers in the pond

crickets in the fields?

 

do you remember

bright autumns

carousel of colors

burning leaves

laughter of our children?

do you remember this?

 

do you remember

our first kiss?

the touch of my hand?

the color of my eyes?

do you remember this?

 

strolling  an ocean beach

seeking peace and treasures

gifts from the sea?

do you remember me?

 

~9/3/2016

 

 

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Visiting Janis

I have had some very good visits lately with Janis.

Here’s the thing: Everything about this disease is rich in trickery, deception, confusion. For instance. I have had some very good visits lately with Janis. This means, the visits went well. Very little angst, crying, pleadings to go home, less toileting problems, etc. I find this easy. Quieter. Less stressful. More opportunities to hug, kiss, hold hands…

But what does this really mean?  Of course we all experience good days and bad. She is entitled to have bad days as well as some really good days, without me reading too much into it. But the real truth is, I see decline. I see her slip a little further away. So when I’m alone I face the truth. The easy visits mean less Janis.

Nevertheless, if I accept this it is a way to use these easier visits to provide her with more affection, closeness, and a patient acceptance, that calms her as well as me. The simple act of just holding her is a powerful, tender comfort for us both. This is important because she is still very tuned into my demeanor. In the middle of one recent teary episode (both of us), she recovered long enough to put a hand on my face and said, “Are you okay?” She does this now and then when I lose it, and it helps me to pull together, so I tell her, “Yes. I’m okay. You helped me. Thank you.” We kiss. She smiles.  It amazes me how the emotion brings us together, just when it seems to be slipping away. (I speculate that for her it has something to do with adrenaline during the stress of emotional upset. But that’s me always trying to read more into what I’m seeing.) It doesn’t last long, but in the moment it is extremely touching for her to be so concerned for my well-being. And I accept it for what it is. And I’m grateful for it.

The most important lessons I have learned over the past two years is that denial is powerful, acceptance takes time…lots of time, and acceptance is not abrupt, it’s not a light switch. It’s about letting go. It’s a gradual process that I’m still working on. I’m not letting go of Janis, I’m letting go of our lives together. There was supposed to be so much more. When visiting her and she’s sleeping, I find myself watching the unit and the other residents whom I’ve come to know by name and personality. I speak with them. I assist them in small ways. I watch staff interact with residents with genuine compassion. I laugh with residents when they are having a moment of levity. I have come to know and respect the compassionate staff: the nurses, CNA’s, the physicians and practitioners, the Aides, the housekeepers, the dining staff. I’ve met other spouses and family who visit with their folks. (We chat, but keep it brief. We know what our purpose is and who gets our time.) But, especially the residents. I have mourned when some have passed on…I miss them…they all have become a part of Janis’s world and mine. How much our lives have changed.

At times, when I’m more able to be philosophical about all this and less emotional, I understand that life is about letting go. Letting go of things like a breath, a day, a pet, letting go of ideas, plans, letting go of property/things, and letting go of the people we love.

I am working (part time) more this summer, the busiest season of the year at the museum. And I babysit my grandchildren twice a week. This has forced me to let go of some of the time I have used visiting Janis. (This is good for me. Children have a way of bringing us right into the moment and keeping us there.) But, not by much because I need the visits. It’s hard to let go. I have shaved an hour off from some of my visits. Down to 3 hours per visit. And I have tried to go to three visits a week which is especially difficult to adjust to, because it usually means that I’m gone 2 consecutive days per week. I find that is about the limit. I did take a small break this summer, one to my daughter’s in Virginia for 2 days and another on a 2 day camping trip with my son. By the second day, I begin to get antsy, I need my Janis-fix. But visits are very important. I am extremely conscious of time these days. It is finite. One thing about getting older is that truth about finite time becomes reality, and I have no idea how much time Janis and I have left for each other.

 “The only constant in life is change.” Buddha

 

 

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A man walks into a bar,”My wife has Alzheimer’s. . .”

The joke ends there. There’s nothing funny about Alzheimer’s.  This blog was started mostly to write about writing and literature and maybe a few life events that can’t escape being blogged. But it never was to be about my wife having Alzheimer’s. There are moments when I smile and maybe even find a moment of humor. Janis and I have shared that now and then even these days. Usually, however, if there is any humor to be found in a visit to her now, it has to do with reminiscence. I will watch her doing something all too familiar, but in a child-like manner,  and I will laugh quietly, followed quickly by a tear or two. She will look at my face and say, “Are you okay?”. This is hard to cover up. Though I try. Because she is so easily drawn into my emotional state. And that can change the entire mood of a visit. Under these grim circumstances, just imagine how it feels to have her be concerned for me. I, after all, get to go home. She will stay locked up.

I think that as I begin writing on Entangled, I may be able to incorporate elements of both into this blog. Now, however, my life is about dementia. I have three great adult kids, and three grandchildren, and they are very much a part of my life. But the hard truth is that when Janis came down with this disease, it took over both our lives. Of course, she is the one with the illness, but in so many ways Alzheimer’s impacts on the entire family. And so everyday, even good days (a relative term ‘good’), are infected with this cruel sickness. When I see her in tears because she can’t express herself, or is just confused by her surroundings, or trying to grasp what I am saying to her, e.g.”You look beautiful today” and she struggles with the meaning of these words or any simple phrase, the more I try to explain the more she becomes upset. Her Alzheimer’s is of a type that is dominated by aphasia, So, I’ve stopped trying to help her understand and instead I re-direct. She’s a young child after all. These tearful moments hit me hard, and so, yes, this disease hurts. Her and me. I can’t be sure what’s going on with her. But, I sure do know what is going on with me. So sometimes it’s easier to describe what I see, hear, smell, or feel. That becomes about me, but it is really about her, through me.

As I start to write on Entangled this symbiosis may become more clear, hopefully it will help me to understand how our lives became so tangled over the half century we have been together. In the process I hope it will be of some help to others. But mostly it is just me writing and that’s what I do. I want to understand how two kids from two different backgrounds, and quite different childhoods meet, become friends, grow up, fall in love, marry, raise three kids, have all the ups-and-downs of that, and start to grow old together only to be stopped in our tracks and thrown into reverse.

Entangled is still in the brewing stage. As always this takes much time to get settled. I risk being too sentimental (because I am), and I always feel doubt at this stage about how I am going to start. Getting a start that keeps me going is important. Finding a fresh start. An interesting start. But mostly a beginning that will permit development. My sense is that this book will be short. And it may become something other than a straight forward memoir. I have numerous notebooks I’ve kept since Janis was diagnosed. They are extremely personal. But that’s the point I suppose, in keeping journals.

Today. I was massaging her feet (edema). She dozed. I looked up and she was peeking through sleepy eyes. She said, “I like looking at you.”

 

~

 

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