Sandi Peters's Blog

[image error]

By Sandi Peters

As I was reflecting on the mental states I and many people are reporting as they deal with the changes brought on by the corona virus, the words helplessness, hopelessness and humility came to mind. The first 2 words seem to accurately describe what is causing quite a bit of psychic distress for many. I’m thinking of them as the 3 H’s. They remind me of what the geriatrician Bill Thomas calls the three plagues of life in a nursing home: loneliness, helplessness and boredom. It seems worthwhile to look at each and see if we can better understand their appearance in our inner world.
Helplessness is the feeling we get when we are confronted with a situation and are powerless to change it. There is often a physical sensation of sinking. The mind continues to generate potential solutions. After all, this is its job. But even as each possibility presents itself there is a knowing that it will not work. Some essential ingredient is not accessible. The situation is not amenable to our best efforts to control it. We feel as if we are a rat in a maze going over the same territory again and again. Futility sets in and with it comes hopelessness.

When hopelessness emerges, we are in what I think of as a bardo state. We are betwixt and between. This is the darkness we spend much of our waking time trying to avoid. There is little light in a hopeless state. We need to wait until our eyes adjust. Most of the time we don’t have the patience or courage for that. We just want to escape and so we desperately pull ourselves back up to helplessness. Like a tennis ball going back and forth over a net, we swing between helplessness and hopelessness in almost unbearable distress. Sartre’s play No Exit comes to mind although our waiting room does not even have the annoyance of other people.
This is where humility comes in. It is not that humility offers us a way out or a solution to our dis-ease. Rather it gives us a context to hold the feelings. It confirms our worst fear…. that, in fact, we are not in charge and we do not have control. Something about that confirmation paradoxically gives us a measure of courage. Perhaps, after all, we can bear the unbearable. Perhaps we can begin to look at ways that might help us live with this new insight into ‘the way things are’.
How ironic that many people who have never given thought to the experience of old people incarcerated in institutions now are sharing their experience, albeit unwillingly. Being sound of body and mind does not seem to preclude these very human, existential experiences. Take away our usual distractions, strip existence down to its essentials, and the underside of life -the side we keep in abeyance – now becomes its surface. We who have had the capacity to flee are now in a similar situation to those who have lost that capacity.
Is there a way to infuse some value into this time or is there only despair? Each person must answer this question for him/herself and the answer does not come without effort. It’s like giving birth. Out of darkness comes light. Out of death comes life. Out of suffering comes renewal. Birthing is not easy. There is the long gestation period, then, for many, there is the pain of delivery. This seems to be the formula for anything new.
What if we imagined that we are all in a gestation period right now? All that we have learned and have not learned are the tools we must use to forge some new relationship to life and to our self. There are very few guides and the terrain is barely marked. While others have certainly trod the interior world before us, and are even doing so right now…..this, after all, is the genesis of most religions…..the fact is that we must each find our particular path, our unique way of responding to whatever it is that life offers us. It is time for us as a people to take Emerson’s essay Self-reliance to heart. This is where we are now as a culture and as a world. Yes, we are all interconnected, and others can certainly encourage us by sharing their struggle, however, if we use their support as a soporific, we will not learn how to be with the difficult for me. We will not learn how to ‘dig right down to the bottom of our souls’ as the play A Chorus Line suggests and find what is really there.
The reader might question: Why does it matter? If I cannot make my distress go away by being with it, why bother? Herein lies the crux of spiritual and psychological development. It seems life itself calls us to ‘be all that we can be’ and that includes knowing the darkness inside and, if not befriending it, at least learning to tolerate it. The Swiss psychiatrist C. G. Jung called this process ‘individuation’.
The people we tend to admire throughout history the world over had the capacity to know the many varied states that make us human. These are the states that interconnect us. These are the states that are experienced beyond time and beyond geography. The irony is that, if we want to experience some measure of contentment and connection to others, ourselves and the world at large, the only way it seems to do that is by recognizing and being with existential discomfort.
So where does this leave those of us who are feeling helpless and hopeless during this spell of social isolation? It leaves us with the possibility that there is more to our discontent than is apparent at first glance. It leaves us with an ultimatum of sorts. Are we willing to probe our dis-ease and endure in the face of unknowing? Are we willing to listen interiorly and wait, even though we doubt an outcome we desire? There is a bit of a conundrum here. On the one hand is the support we receive from others who are also struggling to find light in their own darkness. Their authentic search can lend us the courage to face our unknown. On the other hand, they cannot face it for us. The choice remains ours. Are we going to reach out for whatever distraction is easily at hand and thus keep cycling through unwanted states until despair sets in? Unlike our institutionalized elders who often do not have the physical or mental stamina to undertake such an aspiration, we do have a choice. Which choice do you want to make?

[image error] By SANDI PETERS,



 The buzz word for facilities that house older adults today is ‘community’.  Corporate America has caught on that providing a well-appointed environment is insufficient to foster quality of life.  The new trend seems to re-brand themselves as a ‘community’.  Let’s look at what that word means.



The word ‘communis’ is a combination of ‘con’ meaning “a being or bringing together, next to or with”, and ‘munus’ which denotes service, duty, obligation.  The root of the word indicates ‘a state of being’.  In our day, the word often connotes common ownership or responsibility. Does this understanding accurately represent life in present day American long term care facilities?



Most facilities are corporately owned although there is a smattering of non-profit and religious organizations that administer them.  Governance through policy, rules, and regulations from a top down authority is the norm.  Along with that are measures taken to reduce the possibility of potential liability.  These two factors significantly alter the day to day life of everyone connected with a facility.  Yet another component, however, comes from residents themselves.  They frequently come from disparate ways of life with differing values and beliefs.  In short, there is much that mitigates against the current facility actually being a community.



Communis is rooted in some belief, quality, intent, need, etc. that is shared.  The only real thing shared by residents and staff in a facility is the fact of aging bodies and minds. Spirit rarely makes it on the radar.



Is it possible for a facility to become a community, or at least foster some ingredients of a community? I think the answer is yes, it is possible.  Quaker and L’Arche communities have the best model.  It starts with simplicity, and it fosters connection between people and with the earth.  It requires a mindset of service between all those involved.. staff, elders, volunteers, friends, family, other professionals.  There is the recognition that relationship, in all its many guises, is the key to fullness of life.  When such an intentional approach provides the philosophical bedrock of a facility, it can legitimately call itself a communis.  The specifics of how that looks, is unique to each individual community.



Those looking for community in old age will do well to look beyond the branding of a facility to assure that substance, equality, respect and the values of communis are actively pursued.

[image error] By SANDI PETERS,



  In 2004 I was working in a nursing home.  I had just started and was unsure of the culture. Each morning the routine was for management to meet in what is called a ‘stand up’ where each department reports the work plan for the day and also advises others of any concerns.  This one morning, the DON (director of nursing) complained about a resident who wanted to walk and was a ‘fall risk’.  The DON was advocating restraint measures.  I held my breath to see how the AD (administrator) would respond.  She looked at the DON and said ‘falling is a part of life’.  I let my breath out, and thought ‘thank God, sanity prevails’.



Since that time I have been too frequently discouraged by the lack of sanity in most assisted, memory care, and long term care facilities. When old people move in, without knowing it, they give their lives over to a cadre of people intent on keeping their bodies alive, but limited in understanding their spirits.  Too many times old folks’ freedom, the very freedom most of us take for granted, is curtailed by well-meaning but overly protective staff. In Huxley’s Brave New World, his Lordship, the world controller, firmly believes that the lack of personal freedom in the World State is well worth the price of social stability because he insists, it leads to lasting happiness. To my mind, this description is uncomfortably close to most eldercare facilities.



It is a well-known fact that falling is a part of the aging experience.  Poor balance, lack of good vision, unsteadiness, insecurity, inattention, and a host of other reasons can all contribute to untimely death or impairment.  It is always important to assess each individual and come up with a plan that maximizes his or her ability.  Unfortunately, most facilities are not equipped with the requisite knowledge to assess a person according to that person’s history, desires, and needs beyond the physical. This lack of perspective cannot be laid solely at the doorstep of facilities.



As a culture focused on youth and productivity, there is not a lot of understanding or interest in what it means to be old.  The assumption is that all old people are alike and therefore, all old people need the same things.  Concurrent with that assumption is our society’s aversion to dependence.  We idealize the ‘self-made man’ (and less frequently, woman) and the cowboy.  Their fierce independence and ‘know how’ is seen as the primary virtue worth embracing.  This ethos influences how we approach eldercare.  Whether it’s from a medical perspective that assumes a ‘father knows best’ attitude, or a risk management perspective, fearful of lawsuits, individuality gets truncated when coupled with dependency.  Decision makers in eldercare are embedded in attitudinal assumptions that limit their ability to recognize and make holistic decisions for the person.  To exacerbate matters, opportunity to recognize and address bias does not garner much attention in training programs, and the amount of time devoted to psychosocial/spiritual needs is minuscule.



Concomitant with this built-in bias, and resultant absence of good training, is a chronic scarcity of resources, both financial and human. In a best case scenario (which does not exist), there is an extra staff person assigned to each shift to ensure flexibility and individual attention to elders as needed.  In reality, there is on-going staff shortage leading to lack of availability and overwork due to both low wages, and low status.   Given these limitations, in an attempt to manage risk, facilities become overly solicitous of the body.  Falls are the biggest liability.  The prospect of ‘elopment’ –leaving the building – poses the greatest threat in memory care.   To avoid these possibilities, facilities put into place procedures to protect elders for their own good.  That good, however, is often better for the facility than it is for the elder.



A typical case – let’s call the elder, Miriam.  Miriam has early stage memory loss. She and her spouse have been living in the assisted living section of a life care community.  Miriam uses a walker, is social, has not had an inordinate amount of falls, and has not shown any signs of wandering.   Upon her spouse’s death, the facility deems it best for Miriam to move from assisted living to a locked memory care unit in the building.  Miriam’s family is not in the area, nor are they savvy about eldercare, which means they willingly accept whatever measures are suggested by administration.  Right here the problem begins.  How holistic was the assessment that determined a locked unit was the best one for Miriam?  Yes, she definitely needs reminders, and maybe even escort to events and meals, and she definitely needs help with maintaining an orderly environment, but does she need a locked unit?  What, if any, other options were explored?



In her new locked unit, Miriam is told she can continue to participate in the activities she previously enjoyed in assisted living, however, a staff member must accompany her to the activity.  This is onerous in and of itself because it infantilizes Miriam and sets her up for what is called ‘excess disability’ – the idea that the expectations we have of someone become a self fulfilling prophecy for that person.  To exacerbate the situation, the facility frequently has insufficient staff to accompany Miriam.  The result is that Miriam is stuck.  She has been deemed incompetent to go on her own, and the facility cannot, despite assurances to the contrary, provide her with the requisite staff person.



An elder in Miriam’s situation is usually spending quite a bit of money monthly on care.  When the facility does not have the staff to provide escort, or other services, as desired (and I would argue, needed) by the elder, it is the elder who loses out, not the facility.  The elder is paying for a service she is not receiving, and she has no recourse to complain.  If she does put up a fuss and is insistent on what she wants, the elder can be labeled ‘difficult’. If she persists in her demands, medication is sought to manage her ‘behavior’.  The similarity with Brave New World is readily apparent here.



The truth is that the facility is not able to keep up its end of the contract, and defaults to safety mode and risk management protocols, thus protecting itself first and foremost, and secondarily protecting the elder’s body while not recognizing that there is a spirit that is equally involved in the equation.  When the spirit is repeatedly overlooked, disregarded or relegated to low status unhealth ensues.   In the psychic economy of the person, tending to the spirit, no matter the circumstances, makes the difference between depression and well-being. This is all the more so when we are old and dependent on others to help us meet our needs.



In this situation, the facility is doing its duty. It is protecting the body of Miriam and making decisions for her with the belief that she is no longer capable of making decisions for herself. (In my experience, people with memory loss, especially in its early stages, are fully capable of making decisions.)  So, in our case example, Miriam is the one who suffers. She suffers because the group of people she wants to stay connected to, and the kinds of activities that brought her pleasure, are no longer accessible to her. She is expected to adapt and adjust; however, what she is offered in return is a more sterile and less stimulating environment.  All too often I have seen elders in these circumstances respond by withdrawing.  Mental and emotional capacities begin to disintegrate.  Facilities believe they have done their best to take care of the elder. Decline is attributed to disease eating the brain, not to the environment.  From autopsies done on many diseased brains, we know that not every old person who has a diseased brain on autopsy showed signs of that disease when alive. The difference is that those elders who remain engaged with activities that brought meaning to their lives, were amazingly able to mitigate the usual problems associated with memory loss. Every facility needs to take this finding into account. Safety is not sufficient for quality of life.



Is an elder with memory loss going to decline?  Most likely.  Does that automatically mean a lower quality of life?  Compared to when the person was ‘well’, yes.  Compared to what is possible in the person’s present state, the answer is no.  It is not the disease in and of itself that results in disquiet and ‘behaviors’.  Rather, it is the lack of appropriate care stemming from a lack of personal attention to who Miriam is, and what she needs to thrive.  Underlying this lack is not only the belief that Miriam needs to be protected, especially from herself, but also that she really doesn’t know what she needs.  This mentality undermines any possibility of Miriam being responded to as the unique individual she is.



As a society, we all need to educate ourselves about age bias, about what it is like to be old, about issues affecting older people in facilities, and what is required to continue living as fully as possible, no matter our age.  Until such time as we have a cultural shift, the only way I have been able to figure out how to counteract the restrictive nature of facilities is to ensure that each elder in a facility has a knowledgeable and attentive advocate.  If family members live in geographically distant places, and cannot regularly monitor their loved ones’ care, then they need to identify a good friend or hire a care manager who can be their eyes and ears.  The advocate must be willing to consider the elder’s overall well-being and not be bamboozled by well-meaning, but ultimately unhelpful attitudes pervasive in the world of facilities.



Yes, falling is a part of life, and so is risk. When you take risk away from older people, you inadvertently take away their life and shorten it.  Who among us wants to exist our life rather than live it?  If you have an elder in your care, think about what you would want for your life, listen to and respect what your elder wants, even if the elder has memory loss, and then, make sure that healthy natural choices remain available to your elder until they die, even when that means risking safety for quality of life.

[image error] Annabelle



Six months ago, my supervisor burst in the middle of my music group at the psychiatric hospital: “We have two clowns visiting, can they come in? –Of course!” Two grinning youthful men popped into the day room; one wearing a monkey suit, the other dressed in short striped pants with suspenders, colorful socks with a butterfly pattern, red shoes, a bright Hawaiian shirt topped by a funny little straw hat. They started dancing on my accordion music, partnering with the seated patients, gently holding their hands or mirroring their movements. After a few minutes one clown pulled out juggling balls from his back pack. He alternated juggling and playing ball with some patients. The monkey clown pulled out a dog puppet. Quickly, a whole story, with sounds and words, developed about the dog and the monkey relationship. The dog was offered food and a place to sleep. Smiles were on everyone’s face.  After twenty minutes, the supervised whisked the clowns away. They left to a loud chorus of “Thank you!!” and “Come back soon!”



This first trial has been followed by regular bi-monthly visits. The pattern is similar. The clowns from the MEDICAL CLOWN PROJECT come in pairs wearing funny clothes. It could be princess dresses for women or variations on too small, too big, colorful and cute. They wear minimal make up, or none. They carry a bag of accessories: balls, puppets, “toys”, ukulele, little things that can be passed around and discussed, magic tricks, squeaky/funny sounding objects.



Sometimes the clowns perform for groups, as they did that first time for the psychiatric patients. The shows are improvised, built for the audience of that day and that moment. Other times the clowns do room visits. Guided by a staff member, they enter a patient room, when patient agrees. During five to ten minutes, they create something for and with the patient, using what they see, what they feel. I remember hearing, from the hallway, a theatrical entrance. One clown hid behind the curtain dividing a double room. He asked: “Who is there?” From his bed, the patient, who had never seen the clown, started answering in character.  The following verbal exchange was delightful, witty and clearly tapped into the patient’s creative power. These room visits demonstrate best the skills of the medical clowns. On top of their physical and drama training, from different American and European clown schools, they study counseling and psychology and intern in medical settings. I have come to completely trust their ability to deeply connect with the patients and residents, who are willing to accept an interaction.



I discovered the unusual profession of medical clown a few years ago, when Anabelle, French founder of the NEZTOILES  presented her work during a European Validation Symposium. I was impressed by her personality, her performance, the range of her emotions and her courage. While giving examples of her work at the side of very sick people, she was using the word “joy”, “joie” in French, over and over. What a contrast with the other presenters, and participants. All were in agreement to offer better environments for older adults with memory loss, to listen with empathy, to be patient, detail oriented, knowledgeable about their history and preferences. But this was not joy. Many of us were on the edge of burn-out, struggling with management, regulations and administrative weight. Anabelle was pointing to us the fun of a light hearted communication. She was leading us to a place of wonder, to the child inside us that has power to focus, to imagine and to believe. It turns out that these qualities nurture healing. I was so happy when I learn that San Francisco had its own medical clowns.



On top of their visits with patients and residents, medical clowns provide staff training. I have not attended those training but witnessing the clowns work reminded me of one of the main principle of care: PAYING ATTENTION. The minute they start, the clowns pay attention: to the juggling balls, the bodies postures, the words, the emotions, the moves, the environment. They are completely in the moment, their improvisation is being built right here, like life.

[image error] “Where could I get a book like this one?”Simone lifts her walker’s seat. She pulls out a square paperback, and start turning the pages: ”Look, I finished it. ” I admire page after page of carefully colored mandalas. I noticed that some seems unfinished. Maybe Simone considered the white of the paper as a color and included it deliberately in her choice of hues. “How did you get this book? –I don’t know. –Could you ask your daughter? –Oh no, she has a lot of worries right now. I cannot bother her.“ I ask the social worker if she ever purchased coloring books for Simone. She did not.



The following day, Simone enquirers:”Do you know someone who could use that book?” From under her walker’s seat she pulls a paperback similar to yesterday’s one. “I don’t like it.” I leaf through the untouched drawings of animals and plants. “What is bad about it?” Simone points her index to the pages where the picture nearly reaches the edge of the page: “Here and here it does not work. That’s not good. Do you know where I could buy a book like this? –Let me search for the publisher. –I will give you the money. How much is it?” I have never ordered something for a resident. I am not sure how to handle the transaction. I reach out to my supervisor who answers: “Norine has lots of coloring books. I will make you some copies.”



The following week, she leaves a stack of line drawings in my mail box. Despite my request, not a single mandala is included. I will give the stack to Brigitte who loves to doodle on top of drawings. I get back to my supervisor: “Thanks for the drawings, but I was looking for mandalas. –O sorry, I forgot. You can order what Simone Simone needs. Does she have the funds? If not, the Life Enrichment department can pay for it.” I search “mandala coloring book”. A $4.99 paperback seems close to what Simone liked. I invite Simone to sit with me in front of the computer screen. I point to the book. She does not know the word mandala and does not retain my explanation of it. She tries to steer me away to other titles. I patiently suggest that the others may contain the kind of pictures she does not like. Going back to my initial book choice, I notice a prompt: “Click on all the 34 images”. I show the series of grey little post stamp size mandalas, each barred with a thick diagonal black line, to Simone. “Look! These are the kind of pictures you like. –No, it does not look like it.” She is right. She is not searching for a sheet of grey stamps. But I am happy to have found the book. I order it.



Three days later, I give Simone the coloring book. The colorful mandala over a black background of the cover, and the square paperback format are similar to her previous book. We are both satisfied. “Thank you for ordering it. How much do I owe you? – Five dollars and forty one cents. “ Simone rushes to her room to get the purse that contains her bingo earnings. She returns to count the money in front of me. She has no pennies. I don’t mind.



A few days later Simone walks up to me. She lifts her walker’s seat and pulls out the new book: “I like it a lot. Look!” She has already meticulously filled two pictures. Coming close to me she whispers with a twinkle in her eyes: “I like to do it when I am in the bathroom.”

[image error]




The mother nestled in her favorite spot,
The build-in wooden bench by the nurses’ station,
For comfort, three thin dining room chair pillows.
Two daughters by her side, attentive, serious,
Grey roots showing amidst their dyed hair;
Above them, my red paper decorations,
In front of them, little food containers and paper bags
Covering the mother’s walker.
I smile: “Happy New Year!
How nice of you to take your mother out yesterday.
Did you have a big family meal?
-Yes, we gathered at our brother’s house.
Today our mother is sad.
She wants to go home.”
Small tears roll down the mother’s full and tanned cheeks.
One daughter catches them tenderly with a folded tissue.
I stand on the other side,
Lightly tapping my palm against the mother’s back.
Our eyes meet.
She turns towards one daughter.
She says a few Cantonese words.
The daughter pulls out a mandarin.
“Our mother wants you to have it. She loves you very much.
-Thank you. This will bring me luck.”

What is an Activity Therapist?




[image error]

Zoë uses the term Activity Therapist to convey her interest in the human capacity for creativity in the last phase of life. She believes that we never lose our potential for expression and connection. Using art, music, poetry and literature, as well as nature, she helps her clients connect to what is most meaningful to them.

The activities developed for each group or individual client are tailored to the elders involved, and evolve over time. Each session contains elements of spontaneity and improvisation. This approach enables the elder, (or group) in essence, to lead the activity and go at his or her own pace.

[image error]




What Does a Session or Group with Zoë Look Like?

Individual sessions might look like:

[image error]





An outing to botanical gardens where we find a beautiful spot to sit and sketch the surroundings.
Creating a playlist of favorite songs, singing along and sharing memories.
An outing to one of the Bay Area’s fine museums, and a snack in the museum café while we people-watch and discuss the art.





Group sessions to choose from include:




[image error]





Exploring Poetry
Exploring Archetypal Symbols
Group Storytelling
Exploring Specific Composers/Artists





How Long is A Session?

Individual sessions can last from 1-4 hours, depending on what we do together and what the client wants, and one to two sessions per week is typical. Group sessions are 60-90 minutes long.

Where Do Sessions and Groups Take Place?

Private homes, independent living, assisted living, memory care, skilled nursing, hospital, hospice.

[image error]



Testimonials:

“Thank you for coming to see my mom. You were so present and helpful to my mom. I learned by watching your interaction with her. It meant so much to me for you to assess the place and the situation.”

Adult daughter of a woman with Alzheimer’s disease who is living in a skilled nursing home

“I love to talk with you [Zoë]. The time with you is the loveliest I’ve spent with anybody.”

92 year-old man living in a Memory Care facility

“You [Zoë] light up my life. Not many people have such an impact on people’s lives.”

87 year-old woman living in an Assisted Living facility

“I always feel happy when I see you [Zoë]. You sure know how to make a person feel like they are somebody.”

95 year-old woman living in a Board & Care home

[image error]



About Zoë

[image error] Zoë has ten years of experience providing intellectual and social interaction for elders living with, or without, memory loss. Zoë has a Zoë has ten years of experience providing intellectual and BA in Cultural Anthropology and an MFA in Creative Writing. She was a contributing author to the compendium, The Book of Symbols: Reflections on Archetypal Images. She is trained as a Spiritual Care Partner and End Of Life Doula.
Zoë can also provide a spiritual and cultural context for Jewish clients. Zoë is a Preferred Provider for Ashby Village and a member ofCreative Aging SF.For more information, visit Zoë’s personal website at http://www.activitytherapies.org

[image error]



The nurse stopped me:“Did you check the mail? Lydia’s son sent her a wreath Friday. It should arrive anytime.” I looked in the mail box, no package. I was off the following day. When I returned to work, I checked with the nurse, as I do every morning:”Anything new since Tuesday? –Lydia received her wreath. The son called us with very strict instructions. The wreath should be inside her room, nowhere else. If his mother disagrees, we should hang the wreath high, out of her reach, at a time when she is not in the room. We tried. It did not work. She does not want the wreath in her room. –Where is it now?” The nurse pointed to a large flat cardboard box, under her desk.



Lydia is very social and active. I did not have to wait long before she came up to me:”How are you? My son sent me a wreath. It’s too big for my room. I would like to put it somewhere for everyone to enjoy. Can you help me?–Let’s discuss that at the morning group. We can look at it together and decide what to do.”



When all the participants of our community group had been seated, I brought the box in. They were curious: “What is it? –Lydia received a wreath from her son. Let’s look at it.” Slowly I pulled a heavy plastic bag from the cardboard box. A strong pine smell filled the room. When I reached for the bag opening, a pile of loose needles fell suddenly on the floor. I pulled the wreath out. The needles were very dry and a few twigs were already bare. I could not imagine putting this inside; far too flammable and the staff was going to complain of the loose needles. I proposed “Could we hang it outside? We could see it through the windows. It would be much safer.” There was agreement that the wreath would look good against the outside fence, in the middle of our plants.



I rummaged through my ribbon box and found a strong green cotton lace.



“Lydia, do you mind guiding me? I will go outside. Please, tell me the best spot.” Lydia went to her dining room table; she wanted to be able to see the wreath during her meals. Following her indications, I secured the wreath against the fence. It looked great there with its big red bow.



We all thanked Lydia for sharing the decoration with us.



During the afternoon group, Lydia asked: “I have an announcement to make to the group. My son gave me a wreath. If you look outside there, you can see it.” We all gathered close to the window. The night was falling. It was hard to see the wreath because the glass was reflecting the lights inside the room. But we talked about the wreath and thanked Lydia. She asked me: “Could you take a picture? I want to send it to my son.”



She regularly mentioned the wreath that day and the following days. Each time she would straighten her posture and expand her chest, smiling.



I took a picture. When I gave her one print for her son she asked me for a second one, to put in her room.

[image error]



From her bedroom door, she yells angrily.



I approach.



I ask: “What’s happening?



-She does not understand English”



Whispers a voice behind me.



She invites me in,



Guides me into the bathroom.



Her piercing tone and gestures



Tell that something



Was transferred from the sink to the toilet



(I recognize the word TOALET)



And now IT is gone.



She explains the disaster again and again.



We stare at the empty



Shining white sink and commode.



She sobs loudly.



She complains.



She goes to sit on her bed, head in her hands.



I sit next to her.



She let me be there.



A few wisps of red henna hair



Escaped from her silk head scarf



Frame her wrinkled cheeks.



She seems to look around for a handkerchief.



I get up and find a paper napkin.



She is thankful.



Carefully she tears it in two.



She saves one half under her pillow



Pat her eyes with the other half.



We look at each other



My face, my sighs, my bent shoulders



Echo her distress



I want to hug her small body but



Instead place my palm against her back



She let me.



I am surprised by the softness of her cashmere sweater.



She speaks quickly, harshly.



With my two hands, I mirror her hand gestures.



She let me



My gaze is distracted



By the word UNIVERSAL



Inscribed on the insole of her slippers



On the floor, at the foot of the bed.



Is it a message?



Her voice has become softer.



I have another commitment.



“Excuse me, I have to leave now.”



Slowly I lift my hand away from her back



Carefully I stand up.



She stands up with me.



Is she going to follow me?



Facing her, I bow, Japanese style



A few times, with great respect.



She bows too.



She let me go.

[image error]



“With my siblings, we divide the day in three: 7 to 12, 12 to 5 and 5 to the time my mother goes to bed, around 9. This way we can each have one day off. I usually do the middle of the day. My little brother is still working; he does the evening.“ Phil was standing next to his mother’s bed. She was dozing, under the blankets, only her plump head visible. The room was bathing in the afternoon sun, everything neatly in order, the artificial flowers, the clothes, the family pictures. It was Aglae’s second day in this room, my first visit to her, and to her family, admission questionnaire in my hand. The main questions had been filled already by the rehab place, where Aglae had spent the last four months. But there was not much about her history and her personality. I was glad Phil spoke English. Bit by bit I learned the family saga, their migrations, their difficulties. I understood why, maybe, the siblings were mostly oblivious to the services offered by the staff. This woman, peaceful in her clean bed, had been their rock, their anchor.



I participate in three Family caregivers support group each month. I hold a safe place for the participants; I listen as they exchange stories, resources and pain. They complain about family members, those who don’t do enough those who do too much; the” caregiver syndrome “comes up: a number of caregivers will die before their loved one. Someone used the word sacrifice. We know spouses who “don’t want any stranger in our home.” Is it pride; is it ignorance, it being stubborn? I have heard it called love and this is the word I have started to use.



I thought of love before, exactly a month ago, when I read Gus weekly medical report. Bleeding tumor, the doctor had ordered surgery for the following week. I imagined Gus, lying under his fluffy comforter. What is going through his head? His wife Denise, the love of his life, passed away five years ago, from cancer. He helped her. Then he moved to his daughter’s house. Last year, at the age of 98, he moved into this community. He looks lonely, when he shuffles cautiously along the hallway, pushing his walker on his way to the sing-along. He was a chess masters, but has not been able to find new partners. Who decided the operation? Did he want to please his daughter? Did she want to help him? I thought about the statistics, the anesthesia’s risks, the suffering. The only, unreasonable, reason I could find was love.



I am concluding this somewhat disorganized post, as disorganized as our emotions, by a touching French documentary L’ALARME DE LOUISETTE (LCP, 2017). Marie Sophie Teller filmed the last years of her grandmother, living alone in her house in northern France. As her disorientation increases, relatives step in. Two daughters share most of the care and struggle with frustration, as the communication becomes more difficult. The camera witnesses everyone’s bruised feelings, the burn-out, the decisions, during the loving process of accompaniment.



http://www.lcp.fr/emissions/droit-de-suite/278612-lalarme-de-louisette