One of my favorite mentors in life was the CEO of a non-profit called Winter Growth. Marge created an adult day care for her master’s thesis.
She used the Camus quote as her guide, In the depth of winter, I found in myself an invincible summer. As an activities assistant at Winter Growth I had the privilege of many continuing education opportunities. Marge had a view of aging that was novel in the early 90’s. She understood that a key element of any life is having a job. She told a story of an old fellow who was seen walking everyday with a pack on his back. Someone decided to help him with his pack by giving him a locker in the bus station. On the second day without his pack, the old fellow’s gait was slower, his smile was missing. When asked what had changed—he said, “I need my pack to have a purpose. Without a purpose, I don’t need to be here.” Needless to say the locker was left empty after the towns person realized the value of the old fellow’s backpack. Marge used that story to explain why every day’s activity programming included some “giving back” activity. Creating a purpose.
A recent interview for long-term care insurance included the question, “do you volunteer?” My husband was baffled by that, what does that have to do with long term care? Well—the research shows that volunteering protects the individual from health decline. The interviewer also asked what hobbies we had. Leisure activity is also protective of health. Underwriters understand this. Do you have a purpose outside of your career? How do you give back?
In my memory care experience there are so many valuable stories of presence. There is the trained veterinarian who spent her life taking care of her parents rather than practicing, until they passed away. At that time she started volunteering at the SPCA and continued until her memory prevented the drive. Now she is her community’s expert on pet care and continues to carry her “backpack”.
There is the wife who reflected on her husband’s change after the war.
“He was never the same.” He had nightmares from being the boatswain who had to order the young recruits out of the boat on Pacific shores with many not surviving the first step. As his wife, she missed the man she married, but she felt honored to have a husband who gave so much. She was able to carry the burden of the memories with him and to be present for him through the nightmares.
There is the captain who chartered boats all his life and now in late-stage dementia is the transport assist for wheelchairs throughout his community. Still being present to his crew. There is the social worker with early onset Alzheimer’s who cajoles, hugs, and wass present for anyone she met.
There are the caregivers, professional and family, who daily are present to assist those who are having mental and physical decline. They are sharing the burden, making caregiving their purpose, their backpack.
What does a home-like environment feel like to you? What would be the smell of it? What would it look like? Would a pink flamingo feel right in the front yard or wrong? Would the smell of Pine-Sol make you feel safe or not? These may seem like random and bizarre questions but they matter. As I used the Gerdner & Beck Dementia Special Care criteria scale in my study of End of Life care for people with dementia, I was often stumped when assessing if the dementia unit had a “home-like environment”. I was even more stumped when I applied the assessment to the overall nursing home.
As I look back on my assessments, it boiled down to a few key sensory features: clean scent (non-Pine), bright non-glaring halls and rooms, wood tones, smiling, friendly staff. These were not outlined criteria outlined but my own hard-wired ideal. Sensory satisfaction relies on memory and nurture. My life experience had built for me a cadre of both positive and negative sensory environmental features. My mother’s repeated statement that public restrooms with pine scent were not clean, but masking clean. My early childhood bedroom with multiple windows and light. The visual safety felt from childhood homes with hardwood floors, and wood framed vacation cabins added to my personal measure of home-like. My thirst for acceptance was validated by smiling, friendly staff.
Home is where the heart is. The good and the bad news is, we don’t all have the same sensory memories of home. When applying this to good long-term care environments, individual preferences matter. Notice now what pleases your eyes, your ears, your touch, your taste, your smell, and your soul. Share these reflections with loved ones. As a loved one, take note of the sensory satisfactions of your family member. Just as we thoughtfully choose a present for an individual’s future birthday, one day we can thoughtfully choose a care environment. Take note of the present joy to be used to diminish future trials.
May be golden, but in the case of blogging, may also be a sign of life over-drive. Too busy to reflect. Too busy to breathe deeply.
This weekend at the ripe old age of 52, I heard a sound that tickled me from toe to soul. While on girl’s weekend with my beautiful daughters I heard the sound of beach rocks rolling in the surf. If you’ve never heard it, you don’t realize the magic. If you have, you might call it a “rock concert.” My commitment to reminiscence and the importance of using all the senses is re-energized. We shared magic in the sound.
I smelled Spring scents and heard Spring sounds I had forgotten after six years in the south. The riot of Spring is a small whisper in the south. But in Martha’s Vineyard I inhaled the magic scents of lilac, lily of the valley, and even some early honeysuckle. I woke to the raucous mating calls of birds who had weathered a tough winter or returned from distant warm climates to find a mate and a nesting spot. Take about a seasonal crescendo!
We shared the wild turkey moments as he strutted the backyard and the chicken moments with a flock of hens with young peeps and a vigilant rooster. Most of all we reveled in our solidarity as family, as women, as survivors who had taken the time to re-connect and entwine arms for the next part of our journey. It was a grand weekend to be savored and turned over and over as the rocks at the foot of the Red Cliffs– faintly resembling an appreciative audience clapping. Bravo.
This may be a mis-nomer—but it comes from the reality that there are things we relish and deny ourselves throughout life. Perhaps it’s legitimate to purchase, embrace, plan some of these things for our final days. This came to me while at the Jefferson Hotel in Richmond. I relished the bathrobe provided in the room, I was so sad that it wasn’t until the second night that I realized it was for me to use. As I reached to untie the sash, the texture was sooo rich. Like my mom’s meringue, only fluffier. I priced a carbon copy in the Jefferson’s gift shop. Oh la la. Not in the budget maybe too much no matter how much I made per year. As I cogitated leaving the hotel robe behind, it dawned on me that I could justify it if I was terminally ill. Then I could enjoy it, and bequeath it. Dual purpose. If my world has shrunken to a death bed—I’d deserve to have such a regal, rich embracing robe.
So I think I’ve begun a Death Dowry. Like a psychosocial care plan, but with specifics. I will publish it in case my loved ones want to help develop it.
So far—tapioca pudding, Jefferson robe, beach house-St Pete or Clearwater reserved for a month with rooms/suites for all my loved ones to be with me and be having fun. I get an ocean-front room with my hospital bed near the window and a balcony to access. Godiva dark chocolate.
That’s the start . . . something to build on as I endure some of life’s less fun parts. A cognitive activity while proctoring exams, or waiting in lines, or riding the metro. Perhaps once I have my list, I’ll allow myself to remember we are all terminal . . . and if I wear out my robe, there may be another available.
Her name was Catherine and she was full of grace. She danced when no one else would. She’d kiss your hand, and pat your cheek at every introduction. You were a most welcome friend to her regardless of whether she remembered your name, the day of the week, or the occasion of your “visit.” She lived the smell of roses. Her southern hospitality was the welcome of a rose-lined path. As time went on, the confusion worsened, each fall took its toll in memory loss. She’d set her jaw in a look of confusion as she sat alone. But as soon as a friend walked up to her, she smiled, reached out with hand and a kiss. Her love of people and apple fritters held out to the end.
That grace spilled over to her family. Each of them was as welcoming and accommodating as Cathy. Things that were done poorly were easily forgiven. Shoddy care was not ignored by the family, but addressed and forgiven. When her end-of-life was less than satisfactory, they still showed and spoke a grace that was hard to measure. It was not a given, they understood where things could have been better, but it was a rising above that really called for thought on my part.
I was put in mind of a Free Methodist lesson that explained the difference between grace in church philosophy. He described a chasm between man and God. Some believe that the chasm is automatically closed by belief in God. The Free Methodist explained that prevenient grace was in the chasm, but it was not a given that it was automatically going to close the gap. Man had to ask for the grace to carry him across. It’s man’s realization of the chasm as well as the presence of God and of Hia grace that results in grace rising to fill in the chasm. We have free will.
As professional caregivers we can create many a chasm in our processes. We have the choice to ignore the chasm and assume the family will understand or not realize; or we can explain our mistakes and ask for their grace. In the case of Catherine’s family, grace was there for the asking. That is a powerful message to the roots they’d developed.
Living the smell of roses—a worthwhile aspiration.
All that glitters is not gold. When choosing a place for a loved one with dementia it is very important to research what is truly being offered. Is it simply a secured unit? Does it have a different staffing ratio? Is the staff trained in dementia care? An individual with dementia has unique activity needs. How is that accommodated on the unit? Is the unit designed to encourage reminiscence?
As a caregiver, you are very aware of the unique challenges your loved one presents in the face of medication; meals; loss of independence. How is the facility prepared to meet these challenges? Is the nursing staff sufficient? How many hands are available in the evenings, nights, weekends? Is the activity schedule maintained throughout the week?
Too often we, as caregivers, seek placement after months of exhaustion. We make decisions based on proximity to home; smell; price; an engaging marketer. If we begin shopping before the need is critical, we can use true alchemy to see if what glitters is indeed gold.
Last weekend passionate people committed to changing the face of long-term care met in Little Rock, Arkansas. 1200 strong, they came from many states, many types of care backgrounds but focused on one goal—changing care. It was an inspiring gathering with long-time personal heroes like Bill Thomas and Dr. Richard Taylor taking concepts to a new level. I was fortunate enough to be one of many guides to personalizing care. It was a powerful weekend that will serve as fuel for my teaching, my research and my writing.
“A tree planted by the river is evergreen . . .” This Jeremiah verse 17:8 has been my mantra in providing dementia care. As a healthcare worker I have seen how quickly an elder can die though still breathing, still receiving excellent medical and physical care. The river that once flowed through their life, had moved as surely as a tree that was uprooted. Transplanted to a sterile environment that lacks the unique characteristics that once made them thrive. This environment has many caretakers that tend their physical needs but just a few whose role is to tend their spirit. As an activities director, I take my role of providing quality of life very seriously. I feel the call to define and provide the river. It’s a calling that I cannot ignore.
Today was a final farewell to a beloved member of my eldercare community. She came to us reluctantly from independent living with higher health needs then they could manage. Happy hour was the daily norm for her. Bud Light was her favorite. But she adapted to Root Beer Float Socials and a personal happy hour . Bingo was a second favorite, with a call of B11 resulting in her humorous exclamation of “Chicken Legs”. These are the monikers that will come to mind for years to come for many of us.
But what really will linger is her grace. She was one of the few ladies who was gracious with those with memory loss. She assessed the person with a quick look and then embraced them. Not a physical embrace but a social acceptance and validation. And then there are the stories. Stories of a mom willing to drive the boat for the water skiing children–fast and furious. Stories of a youth in PA with her brother swimming in the cricks. Wonderful memories of summers at Lake Tahoe . . . she took us to places we’d never been. She taught us about grace and living life and acceptance of death. Thank you dear lady—you enriched the lives of everyone who knew you.
My dissertation data collection coupled with helping find Long-Term Care for an elder has left me in a curious position. I have been a committed proponent of elder healthcare that combines the medical and social model. Attending body as well as spirit. The commitment was rooted in two phenomenal work experiences with teams committed to the dual model. Keep in mind, we didn’t call them by the academic term–medical and social models. We simply were committed to holistic care at Winter Growth and at Asbury Methodist Village. Both non-profits had created a team and an environment of care that allowed an elder to thrive, not simply survive. They have been my banner as I designed my dissertation.
Sadly, as I am exposed to different settings near and far, I am seeing just how rare this commitment is. As I use a reliable instrument to assess holistic dementia care, I’m seeing just how muddy the water is. Home-like environments vary and assessment is quite subjective . Optimal staffing numbers are good, but if staff is not trained to provide more than superior medical care, the quality of life of the elder is seriously compromised.
If I have to choose between long life that has little joy, anticipation, or stimulation or a shorter life with much joy, anticipation or stimulation—-I vote for the latter. You can put me in the prettiest home-like environment, keep me physically clean and well-doctored, surround me with a bevy of caregivers; but if I am not offered opportunity to play, to contribute, to be integral to the community—-I have a death sentence far worse than a shorter life.
I suspect I’m not alone. As the later Baby Boomers enter the Long-Term Care market, we’ll expect a far different delivery than what is being offered today. In fact we are looking for it for our parents now.
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