An Irish Blessing

March 17 - St. Patrick's Day

Hello All

This past week, Isabel felt her connections across the sea and around Saskatchewan with friends. Just after we sent an email on her behalf to friends in Orkney, Mum read the March 7 World Day of Prayer Service written by women in Guyana in South America. An quick email response from Orkney indicated that friends there had been attending the World Day of Prayer Service using the same liturgy at their church. Mum also received several cards from friends in various places in Saskatchewan who had attended or provided leadership at similar services.

This week had two themes ~ visitors ~ watching the Brier ~ more visitors ~ cheering those green clad curlers ~ more visitors ~ YEA! Saskatchewan curlers! ~ more visitors! Thanks all of you who dropped in and discussed curling among other topics.

Awhile ago this Irish Blessing came as a greeting card to Isabel. She has viewed it numerous times and suggested that it would be a good web-link to share with her community.

And a toast to all of you with Irish heritage on this St. Patrick's Day! Just click on the link and turn up your volume.

http://www.youtube.com/watch?v=G7O9OqBd2us

The Gifts of Letters and Words

This week we worked with Mum's Occupational Therapist to develop a system for Mum to be able to read on her own.   Mum has a new wooden easel (approx. 14 x 16 inches) that adjusts to whatever angle is needed for reading depending on her position in her wheelchair or lounging in bed.

Mum's gradual increase of movement with her left hand means more independence.  We three-hole punch her emails and letters and place them in a binder.  With the use of a rubberized finger tip on her left index finger, Mum is able to to turn her own pages.

This reading independence is a great gift for the many hours that Mum spends on her own.  The spines of books that do not allow them to open flat make book pages impossible to manoeuvre with this system, but it works well for emails, letters, magazines, and clipped articles from The Western Producer.

Many of you have asked how to be supportive of Isabel.  Letters about your day, the weather, your family, opinions on country and world events, and what is happening in your neck-of-the-woods including outside your window are always welcome.  For those of you who send hand-written letters, we encourage you to send them on paper that can be three-holed punched. It is easy for us to print your emails.

Isabel's address is:

Unit 2-6

Wascana Rehabilitation Centre

2180 - 23rd Avenue

Regina, SK

S4S 0A5

E-address is: <catherine.barnsley@usask.ca>

This week, Isabel "dictated" three lengthy paragraphs on her letterboard to be sent by email to her friends living in Orkney.  She is able to move her left index finger quickly across a small letterboard. A fast flick of her wrist means a NEW WORD.  We are busy with a white board writing down her letters to keep up with her.

Several of you have written asking whether Isabel can use an electronic communication device.  Mum is able to and her Speech/Language Pathologist is exploring various possibilities over the next few weeks. However, it will take considerable time to assess what will work best for Mum's needs.  There are many different devices and any one will take energy to learn.  In the meantime, Mum is satisfied with her small letter-number board. This "board" has the alphabet, numbers from 0-9, and two phrases -- NEW WORD and START AGAIN (for those of us who get mixed up!).

The advancements of this week may seem so small when we consider what Isabel's physical capabilities were prior to her West Nile Virus Neurological Syndrome diagnosis.  However, they are huge when we consider what Mum was able to do even a month ago.

In gratitude for the gifts of letters, words, eyesight, reading ~ and friends and family who write to Isabel.....

The Tournament of Hearts

Isabel called a few shots from behind the glass as she followed the Scotties' Tournament of Hearts with great interest this past weekend. The Canadian Women's Curling Championships were held in Regina over the last week.  Several of the Wascana Staff were glad to catch a few minutes on Isabel's TV and to make a few bets with her on the outcome of the different games.

With Mum's increasing ability to move her left arm and index finger, she is able to spell more quickly on a small letter-number board.  Mum reported the results of several ends of Sunday's final to another resident and his family in the solarium on Unit 2-6.  This increasing dexterity is encouraging to Mum and her Speech/Language Pathologist who is assessing what electronic device can best help her communicate.

As we all contemplate Isabel's second month at Wascana, we note how she is capturing the hearts of her new staff. Mum's love of visitors, plans for recreational activities at Wascana, and good humour are appreciated among the fun-loving staff. Last Saturday night there was a call to a "Party in Isabel's Room" which led to a Charge Nurse inquiring "So just where are ALL the staff?".

Hanging out with Isabel.

Mum attended her first Wascana Birthday Party and Concert last Thursday evening, and will start to more fully participate in other activities in the next few weeks.

With grateful hearts and continued amazement at Mum's determination and positive attitude, we carry on....

The Respirator as FRIEND

Hello All

Isabel continues to settle into Wascana as she spends more time up in her chair each day and participates in assessment for future activities. As Mum's stamina increases so does her energy for communication with her visitors. Once again Isabel is becoming a hub in her wide network and tells her visitors about friends and family through her letterboard.

In early winter, during one of Mum's most challenging weeks, a friend of one of us said: "What would happen if you understood her respirator as FRIEND rather than foe?"

One of her therapists suggested:  "Isabel, as time goes on, we all come to understand the respirator as another piece of furniture -- furniture that helps make your days easier and more enjoyable."

So what does the respirator look like and how does it work?  Mum has two respirators.  They are identical and each is the size of a laptop computer. in fact, her respirator is a small computer that provides a slight puff of air to expand Mum's lungs. The screen shows what amount of "puff" Mum is receiving and a measurement of what is going on in her lungs in response. One of her "laptops" is mounted on a small stand with wheels so it can easily move around her room or down the hall. The other is a "backpack" that will mount on the back of her wheelchair for longer outings.

The 8 puffs of air that Mum receives each minute come through a narrow hose to her tracheostomy at the base of her neck.   Mum has no tubes through her nose and mouth.   This means that Mum's face is completely free to move, show emotion, and mouth words.

At this time, Isabel has not regained her ability to swallow so is not able to drink fluids or eat solid foods. Her nutrition is provided four times a day through a gastric feeding tube known as a  PEG through the abdominal wall.  Mum's process of receiving nourishment is highly nutritious and rather boring, but this process leaves energy for more important activities like visiting!

Valentine's Day crept up quickly this year with all the transitions of the last weeks.  On February 14th, Mum was grateful for a variety of heart messages that arrived in her room and new friends at Wascana to whom she extended her own HAPPY VALENTINE'S DAY greetings!

And forward we go!

Wascana Rolls Out Their Red Carpet

Hello Family and Friends

The Staff at Wascana Rehabilitation Centre (WRC) rolled out their red carpet on Wednesday, January 30 to welcome Isabel as their newest resident. We are all appreciating the homey atmosphere and hospitality.  Isabel and her "floral shop" of roses, daffodils, carnations, and flowering plants all arrived safely on one of the chilliest days of the year.

A thoughtful housekeeper who has been starting her car by remote control from Mum's sixth floor rooms at The General for the last three months brought Mum a fuzzy warm hat for her trip.  Mum's 6F staff cheered her send-off.

Within her first hour of arrival at Wascana, Mum's first visitor was a favourite nurse from the Regina General who was visiting a friend at Wascana. Mum has had a very busy week settling in, getting to know new staff and routines, and greeting other West Nile Virus Neurological Syndrome survivors who have come by to meet her. 

Isabel's cozy single room has a large picture window overlooking the children's playground and large elm trees.  January's morning sun shines in through her window and late afternoon light enters through her door.

As soon as Mum had moved in she asked that we share her new information:

Isabel's new mailing address is:  

Unit # 2-6

Wascana Rehabilitation Centre

2180-23rd Avenue

Regina, Saskatchewan

S4S 0A5

As well she continues to receive mail at Abernethy.

Isabel has a new speaker phone.  When one of us is with her, Mum likes to call friends and family.  Messages can also be left on her "message manager" when one of us is not present to answer the phone.  We will be checking messages several times a week.

Her number is: 306-545-5994.

Isabel continues to receive e-mail at <catherine.barnsley@usask.ca>.  She has a high-speed internet connection which means she/we can respond to emails in her room ~ and watch the latest on You-Tube or downloads from her favourite CBC site.  The grand-kids are pleased about easy high-speed access!

And so we greet February with gratitude for lengthening days, a new caring staff, and Cousin Joy whose presence this past month has been so timely.  Joy heads home to Scotland this week having shared so much time and energy with Mum along with visits with her Robertson cousins. We have endeavoured to do our best to provide for Joy's enjoyment:  a traditional January with brilliant sunshine and blue skies, blizzard, chilly temperatures, ice fog and hoarfrost, and warm Saskatchewan hospitality. 

THANK YOU, Joy!

A Rose in the Wintertime

Hello Family and Friends

Following a week of partying, lengthening days, and the ongoing pleasure of a new larger room, we write to share news of Isabel's long-term plans.

For some weeks now, we have known that it is unlikely that Mum will have the strength to wean herself from the respirator-ventilator at this time.  It has become obvious to us and to the medical staff that Mum is consistently healthier and has more energy and enjoyment of her days when she has the accompaniment of the ventilator. 

Mum's health has improved significantly enough that she is no longer considered acutely ill. She has had a consistently stable seven weeks, and the time has come for her to be discharged from the General Hospital. 

Isabel will be moving to Wascana Extendicare in Regina as a long-term resident.  Rural facilities closer to Abernethy do not accept a patient who uses a ventilator to help them breathe. Wascana is the only place in our health region (urban and rural Regina) that accepts such a resident.  As a long-term resident, Mum will receive some physiotherapy and occupational therapy; and ongoing speech therapy. 

We expect Isabel's move to occur this week.

We continue to not know what Isabel's long-term physical health will be. There are no longitudinal studies on the outcome of West Nile Neurological Syndrome Poliomyelitis. Mum continues to work very hard to gain physical strength and she will be monitored to see what her potential is for future weaning from the ventilator.  But right now, she is to have three months of rest from weaning.

Our coming to realize that Mum would not be able to wean from the ventilator and return to live closer to her own home has been a time of grief for Mum and for us all.   And we know that this grief is shared by Isabel's extended family and friends.

Isabel ~ in her own determined positive way continues to lead us ~ and  to invite us all  ~ her friends and her family ~ to meet her where she is at ~  her usual vibrant loving self interested in other people and her various communities.  

Mum tells everyone that comes through her door that she is going to Wascana.  She is accepting this move.   As we have said so often on this blog, Mum has not lost any of her cognitive ability, memory, sense of humour, care about others, and profound ability to engage with everyone she meets.  We expect she will be no different in her new home at Wascana as she meets the variety of people of many ages and backgrounds who live there. Isabel's emotional energy and ability to maintain many relationships with friends and family has not altered. She knows her friends' phone numbers and asks about things that people told her last spring. 

Mum wants to be up in her chair every day as long as she is able.  She loves visitors and actively inserts her questions into a circle of conversation through mouthed words and pointing to her letter-board.  She looks forward to every day and is so determined. 

We have attempted to explain Mum's situation as well as we are able.  We invite your questions. Your questions help us know what is being said "out there" and help us to be clearer about what is happening.

In mid-January, twelve red short-stemmed roses arrived in Mum's room as a gift from Abernethy friends. Ten days later, these perky roses continue to bloom in her big window.  They remind us of the HOPE that comes like "a rose in the winter-time". Their presence is a reminder of the refrain of a song: 

"And I'll bring you hope

When hope is hard to find

And I'll bring a song of love

And a rose in the winter time."

- Carolyn McDade

Twelve roses bring HOPE twelve-fold as we anticipate this next chapter in our lives.  Prayers and HOPE come in many forms. Thanks for hanging in with us.

Love Isabel, Janet, Nancy, and Catherine and our Families

Cups o' Kindness

Hello All

Isabel continues to uphold her reputation as "Party Gal" on 6F.  January 25 ~ Robbie Burns' Day ~ was a very full day!

Her visitors included among others ~ her three daughters; her Scottish cousin; a niece, grand-niece, and great grand-niece; and several friends from home including three friends with whom she has traditionally celebrated Burns' Night.

Her doctor (who just happened to be in the room at the time) welcomed in a steaming haggis that had travelled two hours from Yorkton. It was carried in by a kilt-wearing Scot who delivered Burns' "Address to the Haggis". The first few lines are loosely translated as: 

"Fair is your honest happy face

Great chieftain of the pudding race

Above them all you take your place... "

In true Canadian style, two visitors who tried haggis for the first time declared the mix of ground meat, pinhead oatmeal and spices to be rather like "a delectable Scottish Ukrainian cabbage roll"!

Mum requested that we play bagpipe and drum music all day.  The nurses had to quickly learn the difference between the skirl of the pipes and the bells and whistles on Mum's respirator. No small task when a room is so stuffed with visitors, the nurses could hardly get in! Mum was up in her chair for most of the daylight hours on Friday wearing her Robertson Tartan scarf and a new Celtic pin (from one of the nurses) with her red sports suit.

Friends and family brought shortbread and Isabel's room was decorated with Scottish posters, calendars and tea towels of Scottish recipes, sheep, highland cows and Robbie Burns' poetry.  Nurses hauled in extra chairs and a love-seat and Mum sat in the circle asking questions about her friends with her letter-board.  A collection of ginger-haired wigs with plaid Scottish tams added to the fun.

Over 20 staff and visitors had a lesson in certain aspects of Scottish culture ~ and a few of us are taking several days to recover!

During a quieter time on Saturday,  Mum used a number board to tell us the phone number of a friend that she wanted to call.  She has not dialled this number for six months. For those of us who can hardly recall our own phone numbers, we continue to be grateful for her keen memory!

There were many words of Burns' shared on Friday.  And just for "old times' sake":

"Should old acquaintance be forgot,

and never brought to mind ?

Should old acquaintance be forgot,

and days of auld lang syne?

For auld lang syne, my dear,

for auld lang syne,

we'll take a cup o' kindness yet,

for auld lang syne."

In gratitude for all of "the cups o' kindness"  that have been shared with us this week including the phone and e-mail greetings for Robbie Burns' Day. 

Thank you!