Over the past few days, I’ve been delighted to let myself get lost in Wendy Lustbader’s new book, Life Gets Better.  I first encountered Wendy and her books at caregiver conferences about twenty years ago.  When I met one of my favorite elders, a Quaker lady named Billy Vincent, we bonded quickly once we knew we both had Wendy’s book Counting on Kindness, Dilemmas of Dependency on our bookshelves.  I inherited Billy’s copy and I share it with other Circle of Life caregivers. I re-read it just last month.  Billy and her family allowed me the privilege of being a caregiver for her sweet husband Tad during his years at home with Alzheimer’s.  Within a few days of meeting Billy, I said to her, “I feel like I’ve known you all my life.”  Billy said, “That’s what Tad says too!”

My elder care life and Wendy’s books have always been on the same shelf in my brain.

Wendy talks and writes about older folks in ways that resonate with me, echoing my own experiences and attitudes. It is rare to find someone who understands and can articulate the precious knowledge that old people are people first and that aging is not a disease but in fact can be a wonderful part of life.  Now, with Life Gets Better, I have advanced into new territory.

This is going to sound silly coming from a grandmother of six, but in the course of reading Life Gets Better, containing stories about elders, many about people in their fifties, I suddenly thought, “Wait, this is me, this is my age group.  I must be an elder!”  Did I finally become an elder when I wasn’t looking?

Since my early childhood, when my favorite people in the world were my Great Aunts, Alice and Jean, I have wanted to be an old lady, like the two of them.  They had a fun life, and the best laughs.  Their old age was far more appealing to me than my grinding childhood.  Having surrounded myself with old people for the past thirty years, I’ve felt like the perpetual young person. My attitude toward age has never been oriented toward the usual goal of being “ageless,” because how then would  I ever achieve that blessed state of being like my great-aunts?

Life Gets Better includes lots of stories about how and why elders are so much happier and fulfilled than the young can ever understand.  In the Epilogue, I found one of those Wendy lines that resonates so deeply with my life.  “I became old when I was young.”  Exactly!  Awareness about aging has certainly changed and improved my experience of my continuing life.  My lack of fear about aging however did keep me from recognizing that somewhere in the past ten years or so (as I approach sixty), I crossed into sacred territory, becoming the age-full being I always wanted to be. (I know, the ninety-somethings still scoff at my new found elderhood, but I will catch up, hopefully, eventually.)

Thanks, Wendy for sharing your life and work.  Anyone who doesn’t know about Wendy Lustbader and her books should go find them, right now, before any of us get much older! (www.lustbader.com)

Over the past twenty-four hours, I have been hearing on the local radio news broadcasts that Robert D. “Bobby” Johnson, a 72 year old man with early stage dementia, has been missing in downtown Bellingham since Saturday, January 21.

I don’t know Bobby, but I am “holding him in the Light,” as the Quakers say.

I’m hoping he’s been restored to his family by now.  How frightening for all of them.
If Bobby is still missing, I want to know how to help in the search.  This afternoon, radio announcers called for people in a certain neighborhood to search their yards and out buildings.  I’m listening now to every newsbreak, hoping he showed up in someone’s garage.

For Photo and newspaper report: http://www.bellinghamherald.com/2012/01/26/2368141/police-looking-for-72-year-old.html#storylink=misearch#storylink=cpy

About twenty years ago, I got a call as a caregiver from my supervisor at the agency where I was employed.  There was an emergency need for someone to go spend the night with a lady, “Anne,” at an Assisted Living facility.  Anne had Alzheimer’s, and had been sent to a doctor’s appointment on a paratransit bus.  At the end of her appointment, she went downstairs to the lobby to wait for her ride home.  Before the bus arrived, she wandered off, on a Friday afternoon.  Police and family searched for her, and located her, dug into a pile of dirt at a construction site, on Sunday afternoon.  The family was exhausted and the Assisted Living would not allow her to remain in their facility without supervision.  I went for the night.

Ann’s only memory and concern about the weekend was that she did not enjoy being checked out for hypothermia at the local hospital, citing a strong prejudice against “the nuns” working there.  We have a Catholic hospital in our town, but the nurses have not been nuns for quite awhile.  Ann’s son was especially exhausted from the search.  He told me he was furious with the local police because they told him to go home, that it was unsafe for him to be in the downtown alleys at 2 a.m.  Their insensitivity to the potential of danger to his mother really stuck in his craw.

Meeting Ann and her family stuck with me, and became the seed for the novel I am almost finished writing.  After living with this story so close to my heart for so long, I can’t help being a bit obsessed about Bobby.  What are the police doing? What is the family doing?  What is the media doing?  In my novel, I despair over the lack of help from the media in Seattle hunting for my fictional “Annie.”  As a writer, I’ve worried that I am overdoing that.  But now reality bears me out.  In this day of tweets and facebooks and instant media, why are we a week late in organizing a good community search?

For children, we have Amber Alerts.  A child would not be lost a week before we asked people to start looking.  In Texas, they have “Silver Alerts.”  Something to work toward?

You don’t have to be a politician or bigwig CEO to make important decisions. We little people have to make crucial choices too.

Friday night: Washington State has been snowed in for a week.

I was unable to get out to my clients. My caregiving wages aren’t impressive, and I worked zero hours this week. In some ways, I don’t mind. I saved money not buying gasoline or extra groceries. I wrote four chapters, about 7000 words, on my novel, so I’m a happy snow bunny. Well,  except that I got a sore throat, body-wracking, headachey cold in the middle of the week.

I’m disappointed.  I’d volunteered to work a shift at the local severe weather shelter, on the women’s side, and couldn’t get my car out to go. There’s a homeless woman in the novel I’m writing, so I was hoping to do some harmless eavesdropping on shelter life. Life is research.  But, my car has coolant problems, to start with. Then, the hood froze shut. I couldn’t even check the anti-freeze. Then, I got sick.

The rain has set in, and the temperature is rising. The weather people say the snow will melt and the roads will clear overnight. My co-workers have been putting in extra heroic hours covering shifts with our clients. Now, one of them needs Saturday evening off to take care of a sick grandchild. Another certainly deserves Sunday afternoon off from a different client. I could use the income on payday. How sick am I?

Should I go to work or not? I must decide soon.  But it’s not so simple as in other work settings.  Like I say, in many contexts, “We’re not selling toasters here.”  Toasters can’t catch a cold.  One client is signed up with Hospice, living with a daughter who loves him fiercely through his dementia decline. The other client has breathing issues. Working with these men requires physical closeness – lifting, toileting, feeding. I have missed these guys over this past snow-bound week.

In the morning, I will have to call my co-worker about tomorrow evening. I feel better tonight than last night. By morning, maybe I will be well enough to commit to that evening shift. If the sore throat is gone, if the coughing is under control… If need be, of course, I and my workers will put our needs aside for the safety of our clients.

To be continued…

Wednesday evening: I’m back to work with clients tomorrow morning.  I got four more days to write and a day to catch up on errands.  As for the decision, I cheated.  Friday night, one of the co-workers called, heard me croak out “hello.” He said no way could I work with his client.  Another caregiver covered Sunday. The grandma co-worker got another family member to sit up nights with the grandson.  Thanks, COL team. Another sneaky ace up my sleeve: my housemate.  She’s 78, and has strong opinions.  “You’re too sick to go work with people,” she insisted.  Thanks, Mom.

Section One Chapter headings:

• Different Missions, Different Agendas, How the Aging Process Affects Communication.
• The Need for Control.
• Legacy, The Need to be Remembered.

Just as we have different psychological missions and drives earlier in life, elders have their own important drives.  They need to continue to be in control of their own lives.  They need to organize and pass on the important events and lessons of their lives.  Understanding and respecting these drives and how they affect us as we age has been a big help to me in communicating with my elder friends (and COL clients.)

From this base understanding, Mr. Solie proceeds to show us “The Everyday World of Older Adults, How it looks, How it feels, How it sounds.”  He talks about the predictable dilemmas of getting older only after addressing what he calls the “Myth of Diminished Capacity.”  Elders are diminished by our misunderstanding of their lives as much, or more, than by the realities of aging.  The prevalence of our assumptions about aging, that all is in decline, can become a self-fulfilling prophecy.

I have long been a cheerleader for positive aging.  I am not talking about the perky “you’re as young as you think” attitude that denies aging, but rather,  this same attitude that Mr Solie explains and portrays so well in this book.  With aging comes wisdom, experience, and the ability to understand the big picture of life.  We need our elders to share their special stories and perspectives.  For that to happen, we need to learn to listen to them and to speak to them in ways that resonate with their pace and those important psychological drives.

One of the reasons I liked and recommend this book is the practical common-sense advice for establishing communication with elders.  Mr. Solie’s work as a medical director and the CEO of an insurance company gives his advice a real boots-on-the-ground feel.  He comes through solidly on his promise in the introduction to do these four things.

• Appreciate elders’ age-based agendas.
• Minimize the clash with our own non-elder agendas.
• Master easy strategies to facilitate elders’ life tasks.
• Enhance language and non-verbal communication with elders.

How to Say It to Seniors is full of interesting stories and insights. Check it out, try it out.  Spread the word.

For 2012, I am planning to post these blogs twice a month, on the 1^st and 15^th of the month.  I have been writing entries of 500 words.  As a writer, I find the puzzle of that word count to be a good practice.  I have a pile of stories to share.  The short story below about Betsy and Sammy was written for Home Care Association of Washington, (although they did not use it for their calendar, they might post it on their website: www.hcaw.org.)

At Circle of Life Caregiver Cooperative, a lot of exciting things are happening. We are getting ready to celebrate our third anniversary with a profit, and patronage dividends for our workers!  We’ve noticed that national leaders (Congress and President Obama) are working on our issues (support for co-op businesses and caregiver pay.)  Articles in Winter 2012 newsletter, on our website.  Links to information on those topics:

www.campaign.coop to download and read the National Cooperative Development Act of 2011.

www.directcarealliance.org   The Direct Care Alliance is the national advocacy voice of direct care workers in long-term care.

Betsy and Sammy

We sometimes serve two clients in one household, and we are happy to help families in that way.  Last spring, we worked with a unique family: Betsy and Sammy.  Sammy, Betsy’s cat, was the main reason she was so keen to get home after months of recovering from a broken hip at a local rehab facility.

Although she’d worked hard at physical therapy, Betsy wasn’t strong enough to walk alone. She had COPD, and full time oxygen.  Six caregivers provided round-the-clock support to Betsy.  We monitored her safety, helping with showers and dressing. We did the cooking, cleaning, and shopping. We worked with the rehab facility to arrange her discharge. We kept her calendar organized, coordinating her care with a nursing agency, physical and occupational therapists, physicians, the pharmacy, para-transit, and Betsy’s friends. Betsy and Sammy were happy, safe, and together.

Betsy’s first night home was rough. Exhausted, she coughed a lot.  Sammy climbed up onto her bed and stayed all night.  He napped, she coughed, he woke.  She talked and he purred.  She napped, he prowled, she coughed. They were thrilled to be together. After that first night, they slept well, with Sammy curled up next to Betsy. Night or day, Sammy was never far from Betsy.

After six weeks, Betsy had a health emergency. Our caregivers facilitated the emergency hospital admission, remaining with Betsy several days until her POA arrived.  We visited Sammy while Betsy was hospitalized, because Sammy’s well-being was Betsy’s passion and part of our job.

A few blogs back, I said this:  Some people like cats, others prefer dogs.  Some people love to be with babies, or even, I’ve heard, teenagers.  My objective was to arrive at the admission that I love folks with dementia.  True enough.

But I’ve been thinking about what lies behind the little bit of humor alluding to teenagers.  As if it is unbelievable that anyone really enjoys befriending that group of humans which is, according to stereotypes, moody, uncommunicative, mercurial, mysterious, and generally a pain in the kahoochie.  I don’t know many teens, and I’m sure some fit that mold, but I do have one great teen friend who has none of those traits. (Hi Tess I luv u!)  So I know, beyond political correctness, that generalizations, while an easy source of humor, are fairly useless in making important judgments about people.

This applies to elders, across the board.  To list and debate the stereotypes only recognizes them, so I am going to skip that.  What I have seen is that people have different pre-conceptions about old folks, usually based on their early-life experiences.  So, what I want to explain is that just because your own grandma was a sweet cookie-baking baby-kisser, this doesn’t mean every old lady is Mrs. Claus.  Likewise, if your neighbor when you were a kid was ten times meaner than old Mr. Wilson was to Dennis the Menace, you might be surprised to learn that there are old men with soft hearts of  pure gold.

Imagine a classroom of five-year-olds.  You know that each child will have a personality and response to the world that is amazingly unique.  Add about eighty years of experience to those kids.  How would this not make every single one of them even more profoundly one-of-a-kind?

My favorite story about generalizations:  At a church potluck, I met an old guy who used to have an orchard right on the Columbia River.  There was a beaver living nearby in the river, and sometimes it would come out of the water and up into the orchard.  The beaver was large and aggressive.  “He would chase my dogs clear up to the house,” the man said.

Not the shy busy beaver of our nature stories, this cantankerous river creature.  Since then I’ve wondered if there are perhaps some bold mice, quiet magpies, peace-loving wolverines.  This seems no less likely than sweet teenagers or writers who know where to end a story.

Diseases that manifest as dementia in our Alzheimer-apparent friends/family members are vascular diseases, Parkinson’s, untreated thyroid disorders, end-stage alcoholism, Luewy-Body disease, white matter diseases. Temporary dementia symptoms might be caused by drug interactions, sleep disorders, vitamin deficiencies, stress and grief.

I use the A-word (aside from it sometimes being the correct medical diagnosis) to break through denial, to come to grips with the Awfulness, or to communicate the Actuality, which is not always awful.  In twenty years of doing this work, I’ve known many wonderful people and families. I’ve had lovely moments and happy times in the company of my Heart Song folks.  Also, I seem to have some genetic PollyAnna-ism which constantly creates positivity out of chaos, mostly sparing me from the awfulness of the disease.

From my point of view, the nightmare of Alzheimer’s is magnified by public perceptions, but sometimes I have to face up to the awfulness. Alzheimer’s cruelty could humble Polly Anna herself.  To share my own humility, I must dismantle the gentler language, throw “dementia” aside and admit that Alzheimer’s Disease (and all it’s companions) are horrid sneaky monsters that cripple the person with the disease and cause the rest of us great pain.

So far, Alzheimer’s has struck me two knock-out blows.  The first came when my dear friend Tope waltzed eccentrically into the disease.  He’d always done everything in his own way, and during the early years of his Alzheimer’s, I lived on his property, saw him daily, was a part of his wacky family.  I’d been working professionally with the Heart Song folks for about five years and on some level I knew what was happening with him.  I worried for him and talked to people about his oncoming Alzheimer’s Disease.  But, in my day-to-day life, I was justifiably aggravated with his difficult, dramatic, nonsensical, stupid, selfish behaviors.  I knew many clever caring ways to cope with the dementia people at my job, but I expected more from him, and from myself, and then again, from him.  I took his actions personally.  He gave the property I was living on to the Land Trust. They evicted me, and then he couldn’t understand why I moved away.  Eventually, we found a new balance. But Alzheimer’s won the Denial round.  What I learned: Never judge family members for any reaction they have to these diseases. 

The other knock-out blow comes when a family member, or maybe a beloved longtime friend, looks at you and says “Who are you?  How do I know you?”  That’s Alzheimer’s in its awful agonizing actuality, a hard punch to the gut.  I don’t see much choice but to get back up and keep on fighting it, with heart songs.  But some of those songs are really sad.

My first encounter with dementia:  I was twenty-one, visiting relatives in my parents’ hometown.   I especially wanted to see my great-aunts, Alice and Jean, who’d been the most fun adults in my childhood.  Alice was a teacher and Jean was a nurse. They’d lived together most of their lives.  They had fantastic laughs. During this visit, Alice was having cataract surgery.  My husband and I visited Alice in the hospital, where she lay abed, thrilled to be able to read again.  In retrospect, I suspect Alice had a much-needed respite in the hospital.

We went to see Jean, who had been home alone for several days.  Jean was in a state I had never seen.  She asked us over and over, “Where is Alice?”  We explained.  She forgot immediately and asked again.  She didn’t understand the situation and couldn’t stop crying.  We couldn’t comfort her. My husband was so distressed he had to leave.  I stayed, visiting despite Jean’s confusion and agitation.   Later my grandmother said this had been Jean’s general condition for awhile.  My grandfather had similar dementia problems in the years before he died.

Twenty years later, I became a professional caregiver.  The home care agency office sent me to my first client saying “Margie’s a bit confused.”  I worked 4 pm to 10 am with Margie four nights a week. I often thought of Aunt Jean.  Margie couldn’t understand the difference between two a.m. and two p.m.  She constantly repeated a story about working in the furniture factory during the war.  She obsessed over her possessions and got furious when things weren’t where they should be, after she’d misplaced them.  Once I arrived to find her agitated by TV images of people starving in Ethiopia.  “What are all those people doing in Bellingham?” she demanded.   A cat food commercial came on during a nature show about lions.  Margie panicked, believing the cat was about to be eaten by the lion.

I began attending trainings about the care of persons with dementia.  I learned the vocabulary:  Alzheimer’s, dementia, beta-amyloid clusters, neurofibrillary tangles, confabulation, aphasia, Lewey Body, memory prosthesis.  I am privileged to have learned from Myra Jones and Teepa Snow.  The learning continues, because there is always new information, new strategies for communicating.  At the heart of this work, I keep finding my serious funny wonderful smart Great Aunt Jean, living on in people I meet. The soul is deeper than the dementia.

Most profoundly, having peers in this work assures me that there are people who know how challenging and rewarding my job is, because they are in it with me.  In the past, I have worked for home care agencies in which I seldom got to know the other employees.  Or, I worked privately for clients, with no other caregivers involved.  At COL, I have stronger friendships than anywhere I’ve ever worked.

Through teamwork, COL caregivers learn from one another. We support one another when the going gets rough, and in this line of work, it often does.  Sure, we are all unique individuals, and sometimes we fumble our communications, but we learn from each other and come out stronger as individual caregivers and as a cooperative business.  Some of the team successes we have had have made me giddy with pride about this amazing enterprise.

The camaraderie at COL is especially meaningful to me because my main work in life is writing, which is a solitary activity.  If I must take time from my precious artistic life to make a living, to pay the bills and all that dull stuff, then I can’t stand to spend that time doing things that are boring and not contributing to my personal growth. I want my job to be a respite from the solitude of my writing life, a place where I can connect solidly with other humans.

Here’s a story to explain what being in the co-op means to me.

For three years, I worked for a client through an agency.  I was her only paid caregiver.  She was a darling person, and she and I become fond of one another.  You know, you get intimate with a person when you know where she keeps her nightgowns and how she likes her toast, and she’s told you stories of her New York years and her true loves and her fears and triumphs.  Then she died.  I knew no one else who knew her, except for her family.  They were sweet people, but I wasn’t their family. They were lost in their own grief.  I grieved for her in a way that no one understood.

Recently, a Circle of Life client died.  Five of us worked with this wonderful man. We felt privileged to know him.  We enjoyed his special personality.  We met him when his wife was on Hospice, and several of us were caregivers for her.  We sympathized with his loss and decline over this past year.  Now, we caregivers can turn to one another and share our memories, our sense of loss, and the grief that is part of doing this work well.

Someday, COL workers will be sharing financial dividends, but for me, the rewards are already coming in.

I am one of (at this moment) fourteen caregivers at Circle of Life and a member/owner of the caregiver co-op. One of the tasks I have taken on at the co-op is updating our website, and that has led to this opportunity for me to become a blogger. I’ve kept personal diaries and journals for over forty years. I’m currently writing my second novel. And, I’ve been a professional caregiver for elders for almost twenty years. Given that background, I believe I can provide regular and interesting entries about what it is to be a caregiver, a member of a worker-owned business, a writer, a sister and daughter, as well as a friend to persons with dementia and other elder concerns.

A friend who has been out of touch for awhile recently emailed me and asked “Are you still with the Wheel of Life?” When I got over my amusement, I realized that “Wheel of Life” would be a good title for this blog, because I would like to write stories that represent my own rolling along down the road of life, not just create a marketing tool for Circle of Life or for myself as a writer but to share stories, ideas and facts about elders and their lives.

Some of my reasons for wanting to blog: wanting people to know how complex and creative this work of caregiving can be, wanting to find a new avenue to explore the big human dilemma of how do we ask for and give help/care to our friends and families? What are the relationships between independence, intimacy, dignity, and let’s face it, toileting?

I am writing a novel about a woman, 96 years old, with Alzheimer’s Disease. She lives in West Seattle with her grandson and his wife, and gets lost in the central part of Seattle for 48 hours. The work of writing a novel is an exhilarating grind. Sometimes I describe the process as being like watching a movie you love in impossibly slow motion, taking two or three years. I get lost in my fictional people and the details of their lives. I hope that by blogging about elder care, being a working person, and my writing life that I may be able to connect with other people for whom these three strands of life are braided together.

Posting this to the website has been a learning curve. I’m thinking I will write another 400-500 word entry several times a month. Coming up next on my wheel of life: lots of direct caregiving, and another blog, about how I got started working with folks with dementia (Alzheimer’s disease).  Meanwhile, I’ll be writing Chapter 45 of my novel, in which the adult grandson in the story searches Capitol Hill for his Granny while coming to some difficult realizations about his marriage.