Imagine a world where savory memories had no place to be shared. At the ripe age of 53, in the middle of the night—half awake. half asleep my mind meanders through memories. Random sensory moments. I try to envision walking the beach with a gentle tide lapping at my feet—I’m alone or walking quietly with another. I can only envision this because I pleasantly remember many times doing this. I drift a bit. Then somehow I wake, connect to the present, it’s too late to talk to my partner. But I am assured that I will be able to sometime. There will be a time I will share this sleep technique or even better the walk on the beach with him. Flash to another sensory memory—slightly hungry. Breakfast as next meal. Strawberry preserves, a whole chain of memory. The magic of Sunshine Strawberry preserves, the creation process of it, the whole berries, the sharing. The commitment of dragging the preserves into the sun, thwarting the ants and the flying insects . . . in humid Maryland. The years later revelation that few of my gifted preserves were eaten. This memory chain begs to be shared, perhaps many times. It’s ancient history. It’s from my early twenties. One of so rich a tapestry of memories. So I get out of bed and I blog. Or I share it with my daughter on the phone tomorrow. As my mom and her mom before her did about other sensory memories.
Now imagine I have been diagnosed with Alzheimer’s. I am trapped inside my head and it is like a labyrinth with dead ends and unfamiliar turns. I am not the person I remember–or anyone else remembers for that matter. I cannot communicate well, I can’t find the word that says “no” to things I used to do with ease. I can’t tell you why I resist getting out of bed, how my sleep is often a haven from the labyrinth.
I can’t remember yesterday’s breakfast or tell you what I want for breakfast today. But I do have something to savor when you give me strawberry jam on my toast. I may not have the judgmental thought, “this is not preserves–where are the berries”. I may not be able to share the whole memory chain of making this in my twenties, the sunshine, the gifting. But I may have a pleasant smile, I may have a nicer start to the day. The strawberry jam may be happenstance, on the menu today. Or how much more valuable would it be if the strawberry jam or preserves were chosen solely for me based on a loving caregiver’s desire to make a connection with me? That would be a comfort note in the labyrinth. A connection made to a small part of Cate McCarty’s memory.
I work with individuals with Alzheimer’s everyday. I have for years. Knowing a small piece of the person’s life, of their preferences gives me the pieces to provide quality connection. The more pieces of the person’s puzzle I have, the more connections I can make. Saluting the captain every time I see him bridges the gap of cognitive loss. Acknowledges who he is and who he has been.
Imagine a world where memories are validated and shared without blogs or even verbal communication. And the labyrinth of Alzheimer’s is lined with comfort notes.
I want to go home. Who can help me get home? I need to get home . . . These are common refrains heard from folks with dementia. As family we take the request at face value, and yet how many of us have heard this refrain from within the loved one’s home? It’s a sobering moment when you accommodate them and yet the refrain remains. You have the realization that “home” stands for something else, perhaps something unattainable. After years of hearing this refrain and attempting to accommodate as a recreation leader or as a family member, I’ve come to believe “home” is that space where the individual’s memory was intact and life was normal.
So far we have no anecdote to erase irreversible dementias. When we do, the stress of caregiving will be eliminated and we will finally see if “home” is a place of cognitive health. But in the interim, we can use validation, “You want to go home, what’s your favorite part about home?” What do you like best about being home?”
We can use reminiscence, “I remember my mom being in the kitchen when I got home, how about you? Do you remember your mom being in the kitchen?” We can use sensory memory, “Let’s have some warm milk and honey.”
This weekend encompasses Passover, Easter and the Full Moon. What taste, smell, sight, experience will take you home? Make it your priority,
Those of us trained in the care of folks with dementia are trained to see negative behavior as a sign of some unmet need. The individual is agitated, apathetic, combative, to list a few examples, because he or she has a need that is not being met. Perhaps it is pain, boredom, over-stimulation, the need for rest or sleep. The inability to communicate results in an acting out, a behavior. It is the trained caregivers’ job to piece out what need is being expressed. If an individual is combative, we are trained to back up, reduce demand. A different approach and perhaps a different time is needed. Sometimes the combative behavior calls for a different person to fulfill the activity. Sometimes an objective and trained observer can see the unmet need where the family caregiver can not. This is where a dementia coach can provide a valuable service.
As I worked with a client recently, I realized that the same rule often applies to those of us without a dementia diagnosis. We may seek help from a lawyer when our more pressing need is a counselor or a home health service. We may reach for food when we are really thirsty. We may act aggressive to a family member or work colleague when our need for time to our self is unmet. Our inability to communicate appropriately results in an acting out, a behavior.
Whether we are working with an individual with dementia or simply trying to thrive in everyday life, it is a valuable perspective to process the individual’s behavior rather than to react with one of our own. To go a step further and proffer a resource that addresses the unmet need may be the greatest gift to give.
Another national study shows that urban nursing homes give better end-of-life care than small-town and rural nursing homes. The study looked at three measures of end-of-life: pain, in-hospital death, hospice referral. There was no difference for pain in rural or urban nursing homes. In-hospital deaths and low hospice utilization were more likely in rural and small town nursing homes.
This rings true with my experience. The small town nursing homes I worked at in my teen years had poorer staffing and less innovation than those I worked in as an adult in more urban areas. Hospices were few and covered huge territories. As a family member the end-of-life options for family living in small town and rural areas were few. Family members have lacked the palliative care options and choices available in urban settings.
It appears to be a phenomenon, “the only game in town”. That’s the senior care home, the hospital, the funeral home we have always used. It’s the only one. There are no choices or any competition creating a need for innovation.
Those of us in mid-life can use this as information for planning. Families living in different locations can use it to better choose the care for an ailing parent. Being the only game in town appears to work only for the provider.
For much of my career as a dementia caregiver and provider I have worked in nursing home and rehabilitation centers. As a member of the inter-disciplinary team regular assessment of each resident included assessing the resident’s quality of life looking at quality of life (QOL) indicators. As I have spent the past six years finishing my doctorate I had lost track of my own focus on QOL indicators. Prior to going back to full-time work while completing school I had counted sand in my car, a back hatch full of smelly rollerblading equipment, a week with three nights of dancing, as QOL indicators. But once I was full-time marketing director and part-time doctoral student, my assessments of my quality of life became non-existent.
Now with only a full time job and my business development, I have re-started my list of QOL indicators. Today the sighting of a dolphin and its baby near our slip started the list. Yesterday my warm fuzzy robe, the one dreamed of in Death Dowry, watching the sun rise was a QOL indicator. Last night, having the leisure to see a movie about Jung and Freud.
What are you QOL indicators? If you can’t think of one perhaps it’s time to stretch and add something to your life.
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 His 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.
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