June 1 Being home

Bria, my 12 year old English Pointer, has blossomed these past four weeks.  She's needed no drugs for her aching bones, she sleeps well, still needs to be lifted in and out of the truck, but is able to walk up and down stairs without help.  Each morning I take the dogs to the beach at low tide when we have access to the sand packed firm by the weight of the water.  Bria gallops across the sand.  I can't remember when I last saw her gallop, probably in Hazelton.  Peter says she's happy because she knows she's finally come home.

I feel the truth of his words, and wonder if he is also speaking for himself.  The health problems which have plagued him these past five years seem to have disappeared, he too seems happy that he has finally come home.

I feel the truth of his words within my own self as well.  I feel energized.  Eating and sleeping deeply.  There is joy in every day.  My allergies seem to have disappeared.  I feel a kinship with the world around me, I know my place within it, and it feels good.  It feels right.

I watch my mother each day as she enjoys her home.  The lethargy and dimness which marks her while in the hospital is replaced with energy, focus and engagement with her surroundings at home.  Physical and mental acts that she struggles with come more easily.  Her Alzheimer's prevents her from remembering what she did five minutes or five years ago ... but her body remembers familiar surroundings and easily resumes familiar rhythms and actions.

Home evokes visceral memory.  Memory held deep within our bones.  A spiritual geography which resonates with our deepest being, our deepest selves.  An inner knowing which moves deeper than conscious memory.  What the mind forgets, body and spirit remembers.

These past weeks I have been reflecting upon how memory informs identity.  The cruelty of Alzheimer's disease, is that memory is stolen and the sense of self diminished.  For my mother, memory is invigorated by familiar surroundings.  I am realizing that the memory is deeper than conscious thought; memory is also held deep within our bodies.  Embracing body memory is embracing life in ways which affirms who we are in our deepest selves.  The sense of self blossoms and soars beyond disease and disability.  Body, Mind and Spirit - inter connected, symbiotic. 

The unexpected blessing I am finding is that in bringing my mother home, we have all come home, and at every level of our being, we are well.

The end of all our exploring
Will be to arrive where we started
And to know the place for the first time.  T.S. Elliot

View's Family Council beginnings

The View's now have an official Family Council advocacy group for residents.  I'm interested in learning more about the history behind the formation of this group.  I've been told that families have been requesting a Family Council group for some years, yet only recently has their request resulted in a Family Council being formed.  This implies an approval process, and I wonder what that entails, why has the request not been approved until now, and why the apparent change of heart in now providing approval.  Questions for another day, meanwhile, the second meeting happened tonight with 11 people, including myself, in attendance.

I'm participating because I believe strongly in advocacy for those who are marginalized and vulnerable; people in residential care are certainly both.  Advocacy by nature implies justice principles, and one can safely assume that advocacy would not be necessary within an institutional, social or political culture where justice principles were respected.   Those principles, and the needs of the individuals affected, need to be expressed to be heard and honoured; within this there is a primary focus upon what is not working which I find unfortunate.  We also need to hold up what is working well, so that this becomes a model of excellence for others to follow.

With that being said, the list of concerns brought to the Family Council is disturbing.  The families identified several areas of concern with their loved ones care: we were then given 10 red dots with which to mark which areas we held the greatest concern.  The areas identified, and the votes each received are as follows:   Dietary-6, Evaluation Process-6, Inconsistency of Care-16, Low Staffing Levels-14, Low Staff Morale-1, Laundry-1, Food-10, Lack of Daily Exercise-8, Lack of Physio-11, Communication-20.  The group agreed to focus on the top five.

I'm looking forward to being a part of this group as it unfolds.  The members are a diverse group of people, what we have in common is a family member in residential care, and our passion for ensuring the best possible quality of life for our most vulnerable loved ones.  There were many stories shared tonight.  I heard frustration in those stories: frustration at not being heard, frustration with navigating the system, frustration with their lack of power to effect positve change.  I also heard hope expressed in a belief that by working together, and in collaboration with other advocacy groups, that our voices will be heard and concerns addressed.

We also represent the next wave of residents.  All of us are baby boomers, caring for elderly parents, and very much aware that in the not too distant future we will be the ones in residential care.  We're fighting for the present needs of our loved ones, but also for our own futures within a health care system that is already overwhelmed and struggling to cope with the ever increasing number of people who need residential care.

Where we put our energy defines who we are, what we care about, and also speaks to our fears for the future.

Some links for reference: 

BC Nursing Homes

Support Our Seniors

Keystone Elder Care

Tidechange

Senior Peer Counselling

Alzheimer Society of Canada

May 25-26 Birthday Blessings

We've had a fun two days, Mom and I.  Wednesday was another drizzly sort of day, so off we went to the Courtenay Paleontology & Local History Museum.  Mom was initially hesitant to go, she's still a bit sluggish and finding it difficult to suit action to words.  However, once she gets going there's no stopping her!



Mom at the museum

I'd love to see the security video footage for our afternoon in the museum.  It's a small museum spread over two floors of what used to be the post office building, and holds an amazing abundance of fossils.  Mom was absolutely enthralled.  She went from display to display with such enthusiasm that she forgot about her walker; I ran along behind her with the walker!  As I picture the image in my minds eye, I think we probably looked like a scene from an old Laurel and Hardy movie.



Mom at Anderton Gardens

 Thursday was her birthday, 84 years young.  Fortunately, we had some sunshine for most of the day, so we were able to take a trip to the Anderton Therapeutic Gardens.  It's a lovely spot, run by volunteers who create sacred space for all ages and stages to enjoy; there's a meditation garden, bee and butterfly garden, an Alzheimer Loop, ponds, statues, gazebo's and of course, lots of flowers, trees and bushes.    Mom got lots of new ideas for her garden at home, and was especially enthralled with the small Mason Bee hives wondering if we could create a similar bee space at home.

From the gardens we went back home. I had purchased a bouquet of Bernard Callebaut chocolate roses which I used to weigh down a helium birthday balloon.  She had a lot of fun with the balloon, it festooned the kitchen table while we tucked into the chocolate roses.  By this time, the rain had started again, so as we munched chocolate and drank our tea, she was filled with plans for the garden, inspired by the sights and fragrances of Anderton Gardens.  The trip to the garden had also inspired memory, she told me the stories of previous trips she made to the gardens, remembering the early stages of its growth, commenting on the changes.  The connections between memory and identify are so very strong, as we talked I could see her posture change, mental clarity and verbal articulation sharpening.  The mantle of Alzheimer's slowly slipping to the background as she lives into her sense of self as a woman who loves to garden.

May 24 A Day of Dreams

Mom's energy level still quite low today, but her mind seems sharper, more clarity evident in her words and questions.  She heads straight to the garden swing when we arrive at the house, and I bring her water and a book to read.

Today I chose a book called "The Garden, Anam Cara" by Robin Craig Clark.  A beautifully illustrated book blending poetry, prose and wisdom.  It's a story of soul journey, with the theme of a garden as metaphor for transitions, connections, and spirit.  Mom is enthralled with the book, and sits reading and reflecting for more than three hours. 

"The Garden" has captured her attention, she laments that she finds it difficult to read the full book all the way through.  Last year, I made a recording of the book, reading it aloud to share with parishioners who could no longer see  well enough to read.  I would lend them the book and the recording so that they could see the pictures and hear the written word spoken aloud to read the book on their own.  When mom came into the house, I dug out this recording and played it for her.  It takes 30 minutes to read the book aloud; Mom listened to the recording twice through.  "There's many different ways to die," she says, "I don't want to die by losing my dreams."

“Wisdom begins with wonder” ~ Socrates

Dreaming is about hope and faith.  Dreams project into the future the very yearnings of our hearts; our thoughts and actions of the day provide the threads with which we weave tapestries of our dreams in the night.  It's intent followed by action which honours the soul, and the dreams feed the soul.  Mom is hungry for dreams; hungry for soul food.

I ask her what she hopes for.  She sits silently for long minutes; I begin to wonder if she's forgotten the question, but I sit silently as well and wait.  "I hope for warm sunny days.  I hope to see all that I've planted grow."  She speaks so quietly I have to lean forward to hear.  She pauses again, more minutes of silence as she gathers her next words.  "I hope to sit in the sun and see my dreams come true."

I feel that the opportunity to live inside that hope is the greatest gift I can give her.  And the greatest gift I have received from her is providing the space and place for her hopes and dreams to come true.  When we live inside the hope, our dreaming souls live forever.

The flower smiled and whispered through her fragrance, 'the infinitesimal dream that we shall weave together will become a fabric with which to clothe all the kingdom of the sleeping and the dead.'  page 48, "The Garden"

May 23 A slow day

Mom greeted me waving with both hands and calling out my name.  "you're here!  I wondered if you were coming or if I was dreaming!" I had found her walking the halls with her walker, she was trying to figure out why her shoes didn't feel right and asked me to see what was wrong.  I noticed that she had no socks on, and the tongue of her shoes was pushed down around her toes.  We went back to her room for socks, I sat her down in the chair while I hunted through her drawers for them.  She asked me to find her hankies, and a different pair of pants to wear for working in the garden today.

Her drawers are a jumble, so I decided to empty her closet and drawers to sort out the contents.  I'd been looking for her "hippy" pants for more than a week without finding them, special pants that I had purchased for her with extra padding around the hips to protect from bumps or falls and asked that she wear every day.  This seemed like a good opportunity to straighten out her clothes so onto the bed they went while Mom gently dozed in her chair.  Now that I was with her, she's content, no longer anxious about where I am or her sore feet.  Hospital staff seemed to be on high anxiety though, as they rushed in to see what was happening.  It seems they are concerned that I might kidnap my mother, and viewed my sorting through of her clothes as a sign that the kidnapping was in progress.

No hankies to be found, all 40 of her labelled hankies appear to be missing.  Did find the "hippy" pants and lots of socks, calmed the staff, folded and hung mom's clothes neatly in drawers and closet, and headed to the nurses station to pick up Mom's meds.

Picking up her meds is a new routine, started a few days ago when it was realized that because Mom's meds are usually given to her with her evening meal, and because she's been eating dinner at home each day, she's not been receiving her daily dose of Aricept and eye drops.  Yesterday, I returned the bottle of eye drops to the nursing station as they were past their expiry date.  Today, the new eye drops have not yet arrived, but I'm given her pills, crushed and held securely in a small plastic bag. 

I'd been assuming that Mom's increased clarity during her days at home was a result of the combination of the connection to familiar and much loved surroundings triggering memory and sense of identity, and the effects of the Aricept which also serves to improve cognition.  Finding out that she's not been receiving her meds these past weeks suggests that her improved cognitive abilities while at home is about the connections between familiar space, memory and identity; the Aricept has not been a factor.   I have noticed over the past few days that she is slower moving physically and mentally, sluggish, more prone to nodding off in her chair, often confused and disorientated when she awakes from these little cat naps.  Today is day 3 of regular meds, and an especially slow day for her. 

I bring her straight to the garden and settle her on the swing.  She says she's thirsty and hungry, telling me she's not been given her lunch.  Did she not eat lunch today? Or does she not remember eating lunch?  Either way, she obviously needs to be fed and watered before we do anything else, and I bring her cheese, fruit, crackers and juice.  The food disappears quickly, but she's still quite thirsty and gulps down two more glasses of water. 

Satiated at last, she looks around the yard and begins to plan her day.  She wants to cut back the dead or dying blooms on the spring bulbs, she wants to sort through the big wooden box behind the shed that holds 15 years worth of accumulated plant pots.  She likes having a container garden, and thinks there are pots in that box we could use to plant more tomatoes.  She notices Tabitha's toys on the grass and says she'll pick them up before she gets into the garden work.  She asks about the compost piles, saying they need some work and hopes that I know how to revive them.  I tell her that I'm very good at creating active compost piles, after all, everything I know about composting I learned from her.  She laughs and tells me that I better get started then!

She's coming back to life, and I enjoy watching her eyes light up, her enthusiasm for gardening, her dedication to nurturing and growing.  I expect her to get up from the swing and get to work, but instead, she nods off, so I let her sleep.  Bria curls up beside the swing, placing herself protectively between Mom and anything that might disturb her. 

The day passes slowly.  Mom has several more 5 minute naps during the afternoon.  She seems to have difficulty in providing action to her plans for the day, though she articulates her self assigned job list in between each nap.  I bring her a book to read, and more water.  She does make a few trips around the yard, but it's late afternoon before she gets up the energy to do more than just looking at her yard, and naming the work to be done.  The 5pm walk around the yard brings her to the container garden we've been planting, and asks me to bring her the hose so she can water them.  She's briefly back in action.

A slow day for Mom indeed, and I wonder why.

May 20 a wee chat

A wee glimpse into a chat with my mother, click here to listen.
(recorded with 'free' sound software, which means the name of the software occurs several times during the sound recording.)

May 23 Pondering Bureaucracy

A few days ago, a staff member at the hospital took me aside to ask how things were going with my mother's days at home, and said, "I'm so glad you're here doing this for your mom.  You're providing a place of sanity in a really insane situation."  I was puzzled by these words and asked for an explaination.  The staff member was not able to elaborate, but added, "Bureaucracies are selfish things, they really only serve themselves."

I still feel puzzled by this exchange, wondering about the back story, what is it that sits behind those words.  The situation we find ourselves in is certainly complex, with so many players and so many levels of bureaucracy, so many different motives and perspectives.

The hospital has its own layers with hierarchies and processes that are not always clear.  Multiple staff and disciplines, each coming with their own perspective and purpose.  With the nursing staff, I am able to feel that we share a common purpose in working together for the best possible quality of life for my mother.  With other staff, I'm not always so sure.

Add to this the ever looming presence of the PTO, with a focus on control through exercising the regulations which give them power.  Respect and flexibiltiy are necessary components of working collaboratively or cooperatively - I have yet to experience any of these attributes.  Mom & her husband own their house as "tenants in common", but with the PTO handling his affairs,  my mother's access to her home has been fraught with bureaucratic obstacles, as well as no longer having full insurance coverage on her home or contents.  And of course, there's also the health authority which has oversight of all people "in the system", with legislation that also gives them far reaching powers with limited requirements for full disclosure. 

Ostensibly, we're all working together for the greater good of vulnerable people in our care.  In practice, the bureaucracies work for their own benefit, bound by their own rules, obscurity of purpose, administrative objectives which creates a sameness.  The indivdual is quickly lost in the tangle of these multi layered systems, and I can see the truth in the staff member's statement that bureaucracies are selfish things which best serve themselves.

bu·reauc·ra·cy–noun, plural -cies.
1. government by many bureaus, administrators, and petty officials.
2. the body of officials and administrators, especially of a government or government department.
3. excessive multiplication of, and concentration of power in, administrative bureaus or administrators.      from http://dictionary.reference.com/

May 11 - A Gnomish Day

The chanting of her address has become a ritual.  As we drive from the hospital to home, and back again, the address has become a sing song chant.  I hear delight in my mothers voice born of pleasure.  I wonder if she's also responding to an awareness of the fragility of her residency.  She was so unwilling to leave the house last August when I  had her placed in the assisted living unit of the hospital.  Although I know that was my only option at the time, she needed to be safe and she was no longer safe in her home, and I needed to go back to Alberta.  She has been safe and cared for at the View's since then, and I am grateful.  Having been removed from her home once,  is the chanting of her home address a way to prevent having to leave again?   I tell her that her house is for her to enjoy to her hearts content, she doesn't need to leave it as long as Peter and I are here to care for her.

Once in the house, she greeted the animals.  She certainly has a way with them, they can't get enough of her, running to greet her, making themselves available for her affection.  The dogs glare enviously at the cat who effortlessly jumps over their backs to land in my mothers lap.

A rainy day today, even during the interludes between showers, the wind makes it too cool for us to spend time in the garden.  The wind is blowing the cherry blossoms from the trees, the wafting pink petals give the day a celebratory air.  Mom decides to curl up in the armchair with a cup of tea and a book, with the window close by to gaze upon the day.  She chooses a book called "Gnomes" originally published in the Netherlands in 1976.  The book is all about the life, history, and daily practices of ... gnomes, the artwork is exquisite.  (ISBN 0-553-01141-3; Peacock Press/Bantam Books; 1977; Will Huygen & Rien Poortvliet) Mom was riveted.  Her tea was stone cold beside her as she read page after page of information, occasionally calling out to let me know of a fascinating gnomish detail.

At dinner she announces that she thinks the garden could use a few gnomes, and we'll need to start a veggie garden to make sure the gnomes are well fed.  Her eyes are twinkling when she says, "anything the gnomes don't eat we can always make use of ourselves."

The planning for the garden is well underway as we munch through dinner.  Root vegetables seem to be where we start.  Mom wants lots of parsnips, carrots, onions, beets and potatoes.  I smile and assure her that the very next sunny day we can start preparing the soil for planting.  I wonder just how much planting we'll be able to do, the garden is overgrown with weeds, and is probably home to several gnome families by now!

dinner conversation - mom loves the fresh veggies

One thing I'm sure of, if Mom wants to plant a veggie garden ..... we're gonna plant a veggie garden.  Peter suggests that we keep our eyes open for garden gnome decorations to supplement the angel statues.  I ask Mom if she thinks gnomes and angels can co-exist peacefully in the garden, and she assures me that gnomes and angels can live quite happily together, but the bears may have to go.


(We have plywood sillouettes of a family of bears, they're painted black and are quite realistic.  As much as mom is enjoying the angel statues, and seems to be wanting to add a few gnomes to the family, she views the bears with suspicion.)

I love that mom is planning ahead, I love that she loves being at home, and I love that I can be here with her.  As I drive her back to the hospital, the sing song litany continues as she repeats her address, but this time she says she's not worried about forgetting where she lives, she's looking forward to coming back home tomorrow.

May 21-22 A Place in Time

I'm intrigued by the total depth of Mom's patience.  Not once in our days together have I seen her become inpatient with a task or situation.  As I ponder this, I come to realize that being inpatient implies an awareness of the passage of time coupled with a dissatisfaction with the present moment.


Nature models patience.  The seeds which lay dormant sometimes for years, waiting for just the right combination of events to sprout.  Trees which grow slowly over centuries.  Literally grounded and centred in the present moment.


Watching my mother at home feels like that.  The familiarity of her surroundings binds her to both past and future, grounding her in the present. 


Saturday was a cool and showery day, much too wet for Mom to be in her garden.  On the spur of the moment, I asked her if she wanted to go for a drive, so off we went.  We drove through Cumberland, an old coal mining town.  She recognized the old buildings and shops, each one triggering a memory of a time and place.  She expressed her surprise at the new homes and buildings, amazed at the new growth in the town.  Her memories of the place feed the present moment, yet the place is not hers, so there are no implications for the future - only the past and the associated memories.  Coming home again, she goes to her bedroom to sort through her clothes with infinite patience and care.

Each item of clothing is held up, the story associated with it shared, vocalized in the present moment, projected into the future.  "I'll keep this sweater," she says, "this one is good to wear in the garden."   The spirit of place and time, binding her to past and future, grounded in the moment.

Sunday brings a pause in the rainy weather, and after church in the morning we head to the garden for the afternoon, Mom's favourite place.  We still have several small tomato plants to transplant into pots for her container garden.  The hospital had a plant sale on Friday, where we purchased 15 small leggy tomato plants.  When she sees them at the plant sale, she questions their survival.  When we bring them home, she sets to work providing them with a place to grow and thrive.  "we can save this one, it just needs good soil and some sunshine."

Mom spends the afternoon filling pots and buckets with soil for our tender seedlings.  She's focussed on the now, a slow methodical task happening in the present moment to provide life for the future.  When she is satisfied with the quality and quantity of soil in each pot, she asks me to put the plants in, and she carefully waters each one.  She expresses concern about the cool nights and the tenderness of the seedlings, and asks me to help her make a plastic tent for each pot to keep them warm ovrnight. 

We've now planted an abundance of tomatoes, lettuce, beans and basil.  Memory is tied so closely to identity, and it is the memories evoked by the slow, repetition of familiar tasks in a familiar place which grounds her in the moment, binds her to past and future.

May 19 Good Stones - Bad Stones

We are so blessed by these warm sunny days.  The dogs enjoy their morning swim, I've begun greeting the day with yoga on the rug I put on the lawn for Mom's garden nest, and Mom is able to spend the day outdoors.

She likes to change location occasionally, so today I set up the patio table and umbrella.  It's on the opposite side of the yard to the garden nest, and Mom takes full advantage, walking from patio table to lawn swing and back again several times during the day.  Autonomy and freedom of movement in a place that you love is important.

One each trip back and forth, she takes time to detour.  She enjoys the Harley, and spent some time today just buffing up the chrome, and admiring the bike.  She wonders aloud about going for a ride, but then quickly shakes her head, saying that she's too old to go for a ride, but not too old to enjoy looking!

Mom also detours to the garden to pull a weed or two, or to pick up any small stones that have crept into the garden beds.  "Oh these stones," she says, "where do they all come from?"

She brings one of the stones back to the patio table, and ponders it for a while.  "You know, it's not a bad stone just because it's in the wrong place.  It could be a good stone if it was put somewhere else."

We sit silently with those wise words for a while.  I feel the truth of what she is saying.  Things happen to all of us, some expected, some not.  Some we enjoy, some we don't.  Some are challenging, others are joyful.  The things that happen are changed by how we respond to them.   Rather than viewing the stones in our path  as "good" or "bad", our lives are enriched by seeing them as stepping stones rather than obstacles.

It all depends where we choose to put them.