Bob King Diaries; o3.o4.2o18
Bob had “too many” visitors last week.
Home Health PT, OT, RN.

Sunday morning call:
Bob: Hello, Apple’s cell!
Me: Heya, Pops! How’s the morning?
Bob: Oh, the usual. Time keeps passing.
Me: Are you accepting visitors today?
Bob: No.
Me: Not even me?
Bob: Oh, you’re not a visitor.
You’re an… intruder.
Me: Oh, I see.
Well, I have some chocolate for you that I got on sale at Safeway. I was going to bring it by.
Bob: Well, that’s another matter!

The time for polite silence is over.

Question:
Nurse Apple, why did you leave your last ‘New’ job?
Answer:
One flippant remark made by the Medical Director of that company about *How Gun Safety Issues in private homes were communicated to Home Health Clinical staff*

That was the tipping point, anyway.
I was still within my 3 month training period with a primarily amazing Home Health organization.
I was giddy with excitement when I was first hired by this innovative, forward-thinking, community-oriented Health Care organization.

99% of the employees were dedicated, passionate, reasonable people. The goals of the company were in direct alignment with my personal and professional goals as a nurse who cares deeply about homebound people with chronic illnesses or disabilities.

People who know me, know various combinations of things about me. But for the sake of a concise answer to the question at hand, I will summarize a few relevant points.

1) I was raised by my grandfather, a WWII army veteran.
He took me along when he taught gun safety courses in a rural community he lived in during his retirement years.

2) My husband grew up with a father and an uncle who were cattle ranchers in the rural SE areas of Georgia and Northern Florida.

3) I *LOVE* my veterans. Most people know this about me.
I *LOVE* serving veterans through my volunteer and nursing work.

4) I *LOVE* to eat animal flesh. I value and appreciate every morsel of beef, lamb, elk, that I am privileged enough to have honorably hunted and killed for my selfish dining pleasure.

5) I do not shy away from “delicate” or “sensitive” social issues. I feel that if we do not discuss and share our fears/concerns/thoughts about issues such as mental illness and gun safety, we cannot move forward and function as a healthy society.

6) I dig seat belts.
I appreciate Ralph Nader.
(Random, I know, but please hear me out…)

7) I have a 17 year old son who has attended public schools in Portland, Oregon since 2005.
He is my only child, he is my world.

8) I vote.

9) I pay taxes. Nurses are well-paid. I pay *lots* of money in taxes. #Happily

10) My son will be a freshman at MSU in Bozeman, Montana in the fall.
The dorms at MSU have gun lockers available for students living on campus who want to have guns available for sporting and/or hunting use.

11) This one might be less well known:
I enjoy archery, and gun target practice.
But both my son and I have been struggling with some depression over the last couple of years, so my husband and I have *DECIDED TO NOT HAVE GUNS IN OUR HOME AT THIS TIME*

Now, back to the pivotal moment that cemented my decision to leave a new-to-me nursing job that I loved:

The setting was a meeting about how, and if, to proceed with the Home Health care of an individual who was known to be struggling with both debilitating physical, and mental illness.

A Nurse Practitioner (also a newer employee with the company), had called an emergency Ethics Committee meeting to develop a strategy for how we, as a Home Healthcare Team, were going to approach this individual’s care.
It came up *as a side-note* that it had previously been noted that there “might” be guns in the home, and that “perhaps” we should have a Two-Caregiver Buddy System protocol set up for visits to this particular home.

A bit of context:
The general approach to Home Health Teamwork, is that visits are made by individual solo members of the team (Nurse, Social Worker, Physician or Nurse Practitioner, Chaplain) in order to maximize the time and attention that each patient/family receives from the Home Health Team.

I learned, approximately 2 hours before I was scheduled to go meet this patient in their home for the first time, about this “possibility” of guns on the premises.

I requested that we backtrack the conversation a bit, as I was new to the situation, and this issue had not come up yet in my orientation or training.

I wanted more information about what I was heading into, and wanted to discuss the company’s policy for sending employees into homes with guns.

I was silenced.

“Apple,” the Medical Director said, “we have the Second Amendment in this country. We have no way of really knowing which private homes we serve may have guns.”

“We cannot sterilize every home we go into.”

Stunned, I managed to reply that I had grown up with guns, and that that was not my concern.

What I wanted to know was how my new employer addressed the issue of gun safety for their employees.

Another person in the meeting, a member of the administrative staff, not part of the clinical team, picked up my line of questioning:

“What is our policy for disseminating this type of information to clinical staff?” she asked.

This person, also, was silenced.

We were informed that this was not the purpose of the meeting we were having at that time. There was apparently “another committee” that was working on formalizing the organization’s policy on safety issues.

I should clarify that there were other concerns I had about the organization I had been newly hired into.
But all of those concerns were related to a pattern I was beginning to see of serious problems with communication.

That one dismissive comment, in that one specific meeting, was the tipping point for me. I was offered another position the next day, and I jumped on it.

I basically fled that job like my hair was on fire.
Not because I am uncomfortable with Veterans, or people with mental illness, or the possibility that I, as a Home Health Nurse, might be entering into homes with guns.

It was the refusal of a person in power, to pause and communicate about people’s concerns. My concerns.

I was fortunate. This is not lost on me.
I’m an experienced nurse. I can work anywhere.

I felt unsafe, and unheard, and unprotected.
I left.
And my heart aches for people who are not given that choice.

Thank you for reading this.
With love, Nurse Apple

Like clockwork.
Nurse Apple books a trip to remote Idaho to see her best gal from Nursing School.
There are 2 precious weeks left b4 Crabby CrabApple starts her (next) new job.
She hasn’t seen Nurse Angie, aka Malheur County Public Health Goddess, for… for far too long.
They book rooms at Frozen Dog Digs Bed & Breakfast in Emmett, Idaho.
Like clockwork, Apple’s phone rings.
Bob has had another dizzy spell. Nay, lost consciousness, taken a wee fall.
Bob knows. Bob does not like it when his daughter leaves town.
Bob always knows.

I find myself reminded of why I had to pull out of the fray of Social Media after the election last year.
Without too much replay, but to provide context… I was witness to people I care about, along with complete strangers, tear one another apart over the topic of:
Vegan vs Non-Vegan.
Everything from the ethics of eating eggs from your own backyard hens, to wolves in National Parks, to breastfeeding, to Economy-Ecology-Ethics.
I stepped out for a half day to think, and then in a moment of insomnia, came back with my final reply:

A week away from Bob: Preparations & Communications

Papa Bob tends to not do so well when I leave town.
Last November, I drove HH up to Canada to experience “American Thanksgiving at UBC.” It was our first college campus visit: a chance for American high school students to visit The University of British Columbia while UBC students are in class, and American kiddos are on break.
The timing worked well for our family; Mr. Blitch has been obligated to work the days before and after Thanksgiving for the last 20 years.
I had recently settled Bob into a new Adult Care Home in Portland, and had a free window to travel with HH.

However, Bob was not feeling as settled as I had imagined. Per report from his primary caregiver, Bob had become confused during the 3rd night of my absence. He decided to shower at around 4 in the morning. He slipped and fell. Miraculously, he did not seriously injure himself, and his caregiver was able to wait a few hours to call me with the unhappy update.
It happened again recently when I was in Seattle for several days for my INELDA (International End of Life Doula Association) training. Bob had what we have affectionately started calling “one of those episodes” and fallen in the dining room after breakfast. Again, not an emergency, but enough to trigger my guilt for not being there for him.
Currently, I am in Pennsylvania with HH, visiting Swarthmore and Haverford Colleges.
And throwing in a visit to Bryn Mawr ~ where, as my mother describes, I was “hatched.”
Bob seems to understand the reason for the college campus visits, but the interest in visiting my birthplace has thrown him. In our conversations prior to my departure, Bob confused my birthplace (where I did not grow up) with Northern California, where I attended Jr. High and High School.
I prepped Bob as best I could for my time away.
I bought him some new socks, as he had become convinced that some of his older socks had “gone missing” (read: in Bob’s mind, stolen by other residents).
Sadly, I observed that not only did he not try on the new socks, but had also worn the same pair of old, grey, socks for at least the last 5 days that I was still in Portland with him.
I brought a bag of Hershey’s Miniatures Mix three days before I left. They were gone within 48 hours.
I restocked: Halloween Reese’s Peanut Butter Cups, HERSHEY’S® KISSES, some plain milk chocolate bars from Trader Joe’s, and some honey roasted peanuts. All of these items were purchased On Sale. It would be a tremendous sin to pay full price. Even for these essential staples.

Coping Strategies

Bob tends to change the subject when he’s feeling uncomfortable.
He asks me if I have my “device” with me. Can I look something up for him?
Me: Sure thing, Dad. What’s up?
Bob: Look up “City. On the edge… of Forever…”
Me, pleasantly surprised:
        Oh! This! Yes, we loved this episode! Remember you had it recorded on a VCR tape. It had Joan Collins in it!
Bob, satisfied: Ah, yes. I was trying to remember her name.

Check-in Phone Calls

I reminded Bob that coordinating phone calls might be a bit challenging with the 3 hour time difference. In theory, he understood this.
The day of departure, Mr. Blitch drove us to the PDX at 0430. Needless to say, a long day of flying, rental car pick up, and driving for the first time on the Pennsylvania Turnpike.
I tried to ring Bob up in the evening: bedtime in PA for the exhausted travelers, after dinner hour for Bob in Portland.
He did not pick up. Not alarming, as he may have been in the bathroom, or elsewhere,  unable to answer the call.
I fell asleep, assuming it would be acceptable to call the next day.
Next day: Afternoon in Pennsylvania, late afternoon in Oregon.
Bob picks up on the first ring.
Bob: I thought you were going to call me to let me know you had arrived safely!
Me: Oh, Papa, I did. I called once, but didn’t reach you. I’m sorry if you were worried.
You know, you have my number– you can always call me too!
Bob: (long pause) … I’m not sure that I can…
Two days later (October 13th):
Me: (Newsy chatter about Swarthmore, Haverford, and Allentown) then,
Dad, how’s your day going?
Bob: Oh, about the same as yours. 60 minutes in each hour.
Me: Funny guy! Hilarious as always.
Bob: So… you’re coming home on the 11th, then?
Me: (gulp) Um, actually we’ll fly in late on Monday evening. Today’s Friday, so we have the full weekend and part of Monday, then we’ll head home. I’ll see you in person on Tuesday.
Bob: Well, wonderful! I’ll look forward to that.

 

 

Bob’s grandson, Harrison, has returned from a summer of immersion & volunteering in Panama.
Bob’s daughter decided to take Harrison and Harrison’s sweetheart, Ivy, to Bob’s for a visit.

Called Bob on the way there to make sure he was awake and accepting visitors:
Bob:  “Hello, Kristin’s cell phone!”
Bob’s daughter: “Hi dad! I’m on the way over there with visitors and chocolate. How does that sound?”
Bob:  “… Well, chocolate sounds good.”

King Size candy bar for Bob King.

 

 

Sleeping On The Job

Bob’s Sidekick stopped by the Adult Care Home where Bob lives to visit him after his breakfast. Postprandial somnolence had already set in, and Bob was back in bed, snoring away contentedly.
Rather than wake him, she headed downtown for a visit with his tax and financial advisors.
Give a nurse a week off, and she’ll likely decide to tend to all the tasks that she had intended to take care of in the previous couple years, but for which she never found the time. Banking and tax turned into errands and lunch.
She headed back much later that afternoon to try and catch Bob in a wakeful state.
He was relaxing in his recliner when she came in. An episode of Star Trek (The Original Series) was on. She happily flopped down onto the foot of Bob’s neatly-made bed.

The Original Star Trek aired for only three seasons (1966-1969).
Bob’s Sidekick made her first appearance in his life late in 1969; and the show, rivaled only by M*A*S*H, was a staple in the King family home throughout the ’70s.

Not quite sure how it is possible, but cable TV treated them to an episode that neither Bob, nor his Sidekick had ever seen.

 

And apparently, the voices of DeForest Kelley, Leonard Nimoy, and William Shatner, evoke soothing and soporific memories for both Bob, and his sidekick. They watched the rest of the episode that had been on when she walked in. Ten minutes into the next episode, they were booth snoozing.
Calm. Peaceful.
Being present for one another.
For one summer afternoon, all is right in their world.

 

The Bob & Kristin Show

There were high hopes for the summer. Bob’s grandson is spending all of July, and half of August, volunteering on the Azuero Peninsula in southern Panama. The plan was for Bob’s favorite sidekick (read: Home Health Nurse ~ Chauffeur ~ Affairs Manager ~ Bill Payer ~ Chocolate & Peanut Snack Fetcher ~ Personal Assistant) to be able to devote more time to Bob’s ever increasing needs on top of her Full Time Actual Nursing gig while her teenage son is away.

But alas, as any nurse or caregiver can attest, plans are often an absurd form of folly.

Bob’s dementia is advancing. Or rather, his retreat into places and times unknown within himself is becoming more evident.
And yet, there is one connection he is clinging to; one person he still invites into his mysterious and quiet world.

And when his sidekick least expects it ~ his humor flashes back and he is present in time with her. For at least a moment.

Kristin:  “Bob & Kristin in the doctor’s office, once again…”
Bob:        “Yeah, ‘How I spent my summer!'”

As his nurse, she observes the physical and behavioral changes: unsteady gait, glazed eyes, decreased appetite and subsequent weight loss. Some changes are obvious, some more subtle.

As his daughter, it’s the complete abandonment of all the activities he enjoyed over the decades that she notices: daily walks, music, books, card games, crossword puzzles… All things once loved, and now? Hard to tell. He cannot articulate why, exactly, he no longer wants or does these things.

There is no longer any planning.
That is to say, no planning beyond the basic ADLs (Activities of Daily Living).
Continuing to live life, in whatever form each new day brings.
Being present.
Being companions into the unknown future.

 

Part II:
Further thoughts on Portland, Oregon’s most recent Health Care Rally…

Why was I there? Who was I there for? What did I hope to accomplish?

(photo cred: reddit.com)

I was there at the Health Care rally holding some people in my heart. 
Knowing each of them guided my development as a nurse, and as a human being. 

“RJ”
A veteran of the Persian Gulf War.
RJ was living in Idaho when I met him. The VA Administration was responsible for RJ’s healthcare. He needed treatment for cancer, and the type of treatment he needed required a temporary move to Portland, Oregon.

One of my goals as his Cancer Care Nurse Coordinator was to inform and educate him about the treatments he would be receiving. Another goal, was to encourage him to tap into his inner strengths, and stay as active as possible in the downtime between daily treatments.

RJ had never been to Portland before. I asked him what he might enjoy seeing and doing while he was here. He thought for a minute, then he told me that he would love to see a Portland Blazers game.
It took a few phone calls, but I managed to get someone on the phone from the Blazer’s Communications & Public Engagement office.
I explained that I had a visiting Veteran in town for several months who really wanted to see a game. I asked if they hook me up with a couple tickets.
A couple? How about four? That was the gracious reply.

I was thrilled, and tremendously grateful.

The tickets were for a home game against the Houston Rockets. A winter game, on a snowy February evening.
RJ had many, many, loving family and friends. That particular month, they were all located in Idaho, and his home state, Ohio. None were able to travel to Portland to take him to the game.
I’m really not a sports fan, not at all. I wanted RJ to have an amazing time, and to attend the game with people who would genuinely enjoy it with him.
I asked my husband, Mr. Blitch, to round up two other basketball fans to go.

I was the driver. We picked RJ up at the VA Hospital; the four men, who had never met each other, all went to the game.
The tickets were at the will call window, along with a Blazer’s hat and shirt that had been left specially for RJ by the Blazers’ management.

He finished treatment in the early spring. He was able to return to his home in Idaho for a while. He had to fly back frequently for follow-up appointments with his Portland Oncologists.

The last time I saw RJ, he was wearing his Blazers shirt from the game.
It was my honor to know him.

Franklin Pierre King
My beloved Uncle Frank. Born March 18, 1932, died March 31, 2015.
Eldest of 3 children born to George Pierre and Helen Bebout King during the The Great Depression. They grew up desperately poor. He didn’t talk to me much about his childhood until the last nights of his life.
Frank served in a US Army Unit during the Korean War. He retired in 1995, after 30+ years of work as a Right of Way agent for the State of Oregon.

Frank loved to dance. Ballroom, waltz, swing. Anything involving music and feet moving across a dance floor.
When my son, HH, was a freshman in High School, Frank had a little talk with him about dancing.
You don’t ever leave a lady standing by herself against a wall in need of a dance partner, he told HH.

Frank died from complications of bladder cancer. He died 9 days after my Aunt Donna died. Donna had lung cancer.

Both of their deaths, especially being so near in time to one another, were tremendously difficult on our family. As an Oncology nurse with a background in Hospice care, it was not my duty, but my sweet honor to participate in the End Of Life care for both of them.

And, I must note: due to retired government employees benefits, and Hospice services covered by Medicare, both Aunt Donna and Uncle Frank had access to excellent Oncology and Hospice care.

Esther Matthews Applegate
My maternal grandmother. Born October 10, 1910, in Calgary, Canada.
Esther had poliomyelitis (polio) as a child. Fortunately she and her family had access to Health Care. She survived. And despite suffering debilitating paralysis, with the aid physical therapy, she was able to walk again, and live a full life.

Esther was diagnosed with thyroid cancer in her 50s, colon cancer when she was in her 70s. She had multiple layers of health insurance and retirement benefits, from her role as a US Army wife during WWII and the Korean War, and from her own work. She was a retired language teacher, fluent in French and Spanish.

Colon cancer treatment included surgery to permanently remove her colon, followed by Radiation Therapy. She suffered a stroke when she was in her early 80s, and lived until 1999. She died on my elder brother’s birthday. She was not quite 89 years of age.

And again, she had full and unhindered access to Health Care, at every stage and phase of her life.  Both as a Canadian citizen, and here in the US.

 

 

 

Part I

I recently went to a Healthcare rally here in Portland. The “It’s NOT over – PDX Healthcare rally” with Oregon Senators Ron Wyden, Jeff Merkley, and Oregon State Representative Suzanne Bonamici.

I had several people ask me why I was going, and, … what did I hope to accomplish there?

Where to begin?

1) I’m a Quaker. This is what Quakers do; we engage. We are involved with our community, the processes of government.

2) I grew up in Berkeley. Berkeley in the 70s and 80s. It was a thing. We were active. We were involved.

3) I was there for my dad.
For every aspect of his care, for my role as his healthcare advocate.
Because it took 3 flipping months to get a wheelchair for a retired US Forest Service government employee, with the sweetest insurance plan an American could have via Federal Employees Health Benefits Program. An 83 year old veteran of the U.S. Army.
For the love of all that is good and holy.
Not acceptable.

4) I was there for one of my dearest friends, Michael.
Over a decade ago, Michael’s wife was diagnosed with a rare form of cancer.
They have, like many of my cancer patients, become excruciatingly and intimately familiar with the American health care system.
They have explored every treatment option available for her here in Portland, and have travelled as far as England for further treatment.
Michael, like me, has a Quaker background. He carries a copy of the Constitution of the US in his pocket. He could dance circles around many of our country’s elected legislators on the issues of Human Rights, Tax Law, and Health Care Reform.

5) I was there for a favorite little buddy of mine, Bryson.
Bryson was born in 2013, by all appearances happy and healthy. But due to the fact that he made his arrival two weeks earlier than anticipated, he received a mandatory MRI. This test unexpectedly revealed a rare malformation in his brain (Vein of Galen Malformation).
This malformation, in turn, caused cardiac failure and pulmonary issues.
Bryson was given a 7% chance to live. He was rushed into brain surgery when he was only 4 days old. His first three months of life were extremely difficult — he received two more brain surgeries, suffering a stroke during the second.
He’s a tremendously strong little person, and has consistently amazed and astounded his family, friends, and medical providers. But he does continue to experience Cerebral Palsy, seizures, and other vision & neurological issues, which require frequent and expensive medical monitoring and rehabilitation therapy.

6) I was there for the many people I care about who have had, or are currently having,  treatment for cancer. Some my family, some my friends, and many of them, my patients over the years.
A cancer diagnosis is a nightmare in and of itself. To add devastating financial burden onto the overflowing plates of patients and their families is simply unconscionable.
Fuck this noise. 
Advocate NOW. Advocate loudly, passionately, fiercely. 
It matters.