A bi-monthly newsletter published by the

Supporting Family Caregivers Across the Lifespan Project

September|October 2012

Most of us have some kind of connection to

music – whether we like to hum along to the

radio, re-live the tunes of our youth or take a

turn on the dance floor. That connection, it

seems, stays with us through our lifetime, and

those with dementia retain their musical

memories even when their symptoms be-

come severe.

According to Music Therapist Susan Summers,

“music extends the ability to concentrate. It

also extends the ability to socially connect

with someone else , to enjoy. It has the brain

firing on all kinds of levels.”

This April, five couples, all past participants in

Memories and More programs, gathered

weekly for a program called Musical Explora-

tions. Music Therapist Susan Summers, Care-

giver Support Project Coordinator Cindy Bou-

vet and three volunteers led participants

along the musical journey.

The program was designed to provide a venue

for self-expression and creativity and to allow

caregivers and their partners to communicate

with each other through music.

“Musical Explorations aimed to offer a safe

place for them [participants], as both indi-

viduals and a couple, to experience connec-

tion with each other, connection with others,

enjoyment, respite away from the tasks of

caregiving,” said Susan,

It proved a powerful experience for everyone

who participated. Over the five weeks, the

couples where able to find connections that

they, perhaps, had previously lost. “This was a

very dedicated space of loving, of devotion, of

reconnection on an emotional level that I did

Musical Explorations Keeps Couples in Tune

by Josie Padro

The Family Caregivers’ Grapevine Page 2

Musical Explorations

continued from page 1

not see in the same way in the first week,”

observed Susan.

By getting to know each person, Susan was

able to tailor the activities to suit their indi-

vidual needs. For example, she asked partici-

pants to respond to the music with actions

rather than words, so that everyone felt com-

fortable participating. She brought in drums

to help channel some of the restlessness ex-

perienced by some participants. She also

chose music that was significant to group

members: “I’s the B’y” for someone from the

Maritimes; “Edelweiss” for someone from

Austria.”

Participants with dementia became noticea-

bly more relaxed over the course of the five

weeks and were more comfortable being

apart from their spouses for certain activities.

Caregiver Program Coordinator Cindy Bouvet

observed,

“People really expressed their creativity.

They warmed up; they relaxed; they were

more expressive; they were more verbal.”

Members of the group also became closer to

each other. Because of their shared caregiving

experiences, they had a strong connection

with each other. They reported that they ap-

preciated the sense of acceptance and under-

standing that came from participating in the

group with others going through a similar life

journey. Collectively, the group wrote a

touching song about their caregiver-care/

receiver journey, which expressed both the

challenges and rewards of their experiences.

Musical Exploration was a powerful experi-

ence for both Cindy and Susan, who felt it

was a privilege to share music with this group

of caregivers and care receivers. They encour-

age those who did not get a chance to partici-

pate in Muscial Explorations to explore the

power of music in whichever way they can.

“This music group has been so very

therapeutic for both my husband and

me. I am seeing him touched and re-

sponding to the music. Seeing the

memories that have touched him in his

past to come welling into his eyes—it

touches me. Sharing this experience

with him is a positive time for us to-

gether to share.”

—Caregiver

“Joy, sorrow, tears, lamentation, laughter -- to all these music gives voice, but in such a way

that we are transported from the world of unrest to a world of peace….” Albert Schweitzer

Reading Material

Page 3 September|October 2012

Caring for a loved one can be an emotional

experience. In a perfect world all those emo-

tions would be positive, but we can be sur-

prised and even ashamed by some of the

negative feelings that arise. Keeping those

feelings to ourselves is a natural reaction, but

many caregivers share the same feelings. How

to deal with and accept those feelings is the

subject of a number of books and DVDs avail-

able in the NSCR library, suite 201, 935 Marine

Drive in Capilano Mall.

Letters from Madelyn: Chronicles of a Care-

giver (Beautiful America Publishing, 2007) is a

collection of letters written by Marelyn Kuber

to her daughter Elaine K. Sanchez. They were

written during a time when Mrs. Kuber was

looking after her husband, who had suffered a

stroke. The letters express in vivid detail the

everyday experience and frustrations of being

a-full time family caregiver. Through her let-

ters, we follow Mrs. Kuber’s sometimes touch-

ing, sometimes funny and sometimes sad

journey as a caregiver – a journey that other

caregivers will find familiar.

The book is accompanied by a 45-munte CD,

Caregiver’s Survival Training, during which

Elaine Sanchez discusses the challenges of

caregiving. Reflecting a sense of humour very

much like her mothers’, Ms Sanchez discuses

what she terms the four horseman of care-

giving – anger, guilt, depression, and grief. It’s

an engaging talk, that speaks frankly about

the task of caring for a loved one.

The Caring Caregivers Guide to Dealing with

Guilt (Orchard Publications, 2004) also deals

with how to cope with emotions most of us

think of as negative. The writer uses real-life

examples to illustrate many of the difficult

situations encountered by caregivers as well

as practical solutions for dealing with those

situations. The “Question and Answer” sec-

tion at the end of the book also provides

some very practical solutions. Note: the au-

thor expresses her strong religious beliefs,

which may deter some readers.

The Family Caregivers’ Grapevine Page 4

Using Social Media to Stay in Touch

There is no single type of caregiver—they

come in all sizes, young, old, male, female,

rich and poor. They can be savvy when it

comes to technology or they may prefer not

to adopt each new device or trend that comes

along.

Social media has taken off in recent years, and

here at NSCR Caregiver Program, we’re won-

dering if North Shore caregivers would like

more opportunity to connect using websites

like Facebook or Twitter. To find out, we’ve

created a short online survey at

www.surveymonkey.com/s/HW9QH87 Please

fill it out and let us know whether or not you

would like to social media as another way to

connect with us. We have started a Twitter

account, @nscr_caregivers, where we have

been posting links and events of interest to

caregivers. We invite you to follow us!

For those who have yet to dip their toes in

the social media swimming pool, here’s a little

primer on some of the most common sites.

Blogs: The word blog is short for web log. It’s

an online journal, and many people use them

to focus on a specific subject, such as food,

health, or parenting. The Family Caregiver Al-

liance Family Caregiver Alliance,

www.caregiver.org, frequently updates its

caregiver blog .

Facebook: Initially popular among college

and high school students, Facebook has be-

come extremely popular among middle-aged

women, who are using it to share photos of

family and to keep it touch with distant

friends. Many non-profit organizations use

Facebook to communicate with their mem-

bers and other organizations. Private business

also use it to keep in touch with customers

and promote their products.

As with all social media sites, privacy is a con-

cern with Facebook , and many choose not to

participate because of this. Others use privacy

settings to limit who can view their Facebook

site.

Twitter: Like Facebook, Twitter allows people

to keep in touch, but the format is much

shorter. Postings, known as tweets, must be

limited to 140 characters.

Pinterest: Gaining wildly in popularity,

Pinterest acts as a personal online bulletin

board that allows users to post links to sites

they like.

Managing Multiple Medications

by Josie Padro

Page 3 Page 5

It might start with a pill to take the edge off

some knee pain, then maybe thyroid hor-

mone replacement medication to boost the

body’s waning supply, later another collection

of pills to control an irregular heartbeat. Over

the years we or those we care for can end up

having to take a surprising array of medica-

tions – and it requires major effort to make

sure they’re taken correctly – some with food,

some on an empty stomach. Sometimes we

have to learn skills like taking blood sugar

readings and giving ourselves injections.

Figures collected in 2005 by Health Canada

found the average number of prescriptions

filled that year by Canadians was 14. People

between the ages of 60 and 79 had an aver-

age of 35 prescriptions filled and those over

80 had an average of 74.

There’s no doubt that medications are life sav-

ing; they also enable many of us to maintain a

good quality of life. However, there’s growing

concern among health professionals and sen-

iors that taking multiple medications may not

be as healthy as intended. That’s because

while every medication has its intended bene-

fits, it can also have unintended side effects or

interact adversely with other drugs being

taken.

Those adverse reactions could be anything

from drowsiness to confusion, falls, or inconti-

nence. Even seemingly benign over-the-

counter medications can cause problems. For

example the common anti-inflammatory Aspi-

rin can add to the effects of anticoagulants,

also known as blood thinners, possibly leading

to a lowered ability to form blood clots – not

a good state to be in if you have a fall or a car

accident.

Introduced in 2007 PharmaNet, a database

administered by the BC Ministry of Health and

the College of Pharmacists, keeps track of all

medications prescribed to BC residents phar-

macists, hospitals, mental health facilities and

some general practitioners. It also stores im-

portant information about allergies, medical

conditions as well as MSP numbers.

September|October 2012

The Family Caregivers’ Grapevine Page 6

Managing Multiple Medications

continued

PharmaNet helps prevent duplicate prescrip-

tions and is especially useful when someone

is admitted to hospital or relocates to a differ-

ent BC community. As a central source of in-

formation, it allows pharmacists to assess all

the medications prescribed to one person and

to flag any potential incompatibilities.

What you can do

While it’s reasonable to expect health care

providers and pharmacists to make sure we’re

not given unnecessary medications, as health

care consumers we are also responsible for

our own health. Making sure we know what

medications we’re taking and why we’re tak-

ing them is the most important way to pre-

vent complications that can result from taking

too many medications. The following sugges-

tions may help:

Keep a tab on the tablets. Maintaining an up

to date medication list is the first step – that

includes supplements and herbal remedies.

Place a copy of this list in your wallet so you

can refer to it during visits to your doctor or in

case of emergency.

Get to know the drugs you’re taking. Most

medications come with a fact sheet; even

when you’re refilling a prescription give this

sheet a careful read. There may be new infor-

mation you need to know.

Ask questions. Many of us are reluctant to

take up our doctor’s time, but most health

professionals will take the time to explain be-

cause they know that when patients have the

proper information they are more likely to fol-

low their treatment and avoid complications.

The following are examples of questions you

may ask: What does the medication do? How,

when and for how long do I take the medica-

tion? Are there any foods or other drugs I

should avoid while I take this medication?

What side effects should I watch out for and

what should I do if they occur? How soon will

the medication take effect?

Take medications as directed. To be effective,

medications need to be taken at the right

dose and frequency. If you feel you need to

cut back or need a higher dose, contact the

health professional who prescribed the medi-

cation and let them know.

Those on a tight budget may try to stretch

their dollar by taking only half the prescribed

dose; some may choose not to purchase the

medication at all. If cost is a barrier, there are

may be help available.

Low-income BC residents could be eligible to

have the entire cost of their medications, or

the majority of it, paid by Fair PharmaCare. To

find out if you qualify contact Health Insur-

ance BC at 604-683-7151.

Page 7

Laugh Lines

September|October 2012

Paraprosdokian sentences end with an unexpected twist:

• Why does someone believe you when you say there are four billion stars, but check

when you say the paint is wet?

• A bank is a place that will lend you money—if you can prove that you don't need it.

• Change is inevitable, except from a vending machine.

• I've had a perfectly wonderful evening, but this wasn't it.

• The early bird might get the worm, but the second mouse

gets the cheese.

Use an organization tool. Drug stores and

medical equipment stores sell pill organizers

that can help group the medications that need

to be taken throughout the day. You may also

ask your pharmacist to package your pills in

blister packages. Some pharmacies charge a

small fee for the service and it may take a

while depending on the complexity of the

medications you’re taking. Blister packages

can accommodate anywhere from a week to a

month’s supply of pills.

Get to know your pharmacist. These profes-

sionals have completed years of scientific

study and understand the complex drug ac-

tions and interactions. They also have access

to extensive data bases including PharmaNet.

Part of their job is to teach people how to take

their medications safely and to ensure no ad-

verse effects occur.

Getting to know all about our medications or

those of a loved one can be a little over-

whelming, but the more we know about those

medications the better.

Managing Multiple Medications

The Family Caregivers’ Grapevine Page 8

Reflections on Caregiving

—Allison Derban, Caregiver

EEEEmpty NNNNest

You arrange your life differently.

You are free and able to indulge in hobbies and

favourite activities.

You are a couple doing things together

and other things to please yourself.

Life is lovely and free, each living with and

around each other.

Then, illness – shock – surprise – disbelief.

Some blame, you have to blame someone,

something for messing up your life.

Anger- disappointment-resentment

Gradually – there is acknowledgement

that situations have changed.

There is no use fighting it, you have come

up to a wall, a barrier that must be overcome

or passed through.

You can go east or west along the barrier, and

it is unending, no way to get through.

Until you see a weakness with a slight light

shining through. Like a hole in a dike.

You must work at that hole, make the light brighter, bigger until you can pass

through to the other side. Into the light and knowledge needed in this new way of life

that includes the affliction. or illness that you are going to accept as part of your life.

It is a whole new challenge, a whole new beginning.

We can all relate to the feeling we get when

we’ve been carrying a heavy package for a

long time. Our muscles give us warnings that

we can’t continue to support the load until

eventually we’re forced to put it down. After

taking a rest, we can pick up the load and

carry on.

Caregiving is similar. Even though it’s done

willingly and with love, caring for someone on

a daily basis is taxing. In addition to the physi-

cal work that may include bathing, dressing

and transferring; caregivers can suffer from

inadequate sleep if they are up during the

night assisting their loved one. According to

the Family Caregiver’s Alliance, 22 percent of

caregivers report they feel exhausted by the

end of the day.

There’s also and emotional load to carry. Care-

givers often feel torn between guilt – feeling

they are not doing enough or a good enough

job, and frustration – feeling they cannot de-

vote enough time to their career, friends or to

caring for their own health.

The impact of caring for someone else doesn’t

go unnoticed by the body and the mind. If

caregivers don’t take time to look after them-

selves they can eventually suffer compassion

fatigue, also known as burnout. Symptoms in-

clude sleep disturbance, constantly feeling

physically tired, changes is body weight, apa-

thy, and chronic physical problems.

Caregivers who are stressed have a higher

rate of coronary heart disease and stroke.

Older caregivers are at higher risk of falls and

injury and often experience worsening of their

own chronic illnesses. Depression is also a

very common experience among caregivers.

Looking after yourself is not only important

for your own well being, but it will ensure

your ability to care for your friend or family

member.

If you don’t know were to start, you might

want to attend one of our Fall caregiver ses-

sions. Check out our calendar of events or

contact Karyn Davies by email at

karyn.davies@nscr.bc.ca or by phone at

604-982-3320

Page 9 September|October 2012

Caregiver Fatigue

The Family Caregivers’

Grapevine is a bi-monthly

publication intended to

support family caregivers by

promoting the importance of

self-care while providing

practical information and

resources.

If you have any questions or

feedback about the

newsletter, please contact

the editor at:

josie.padro@nscr.bc.ca

The Caregiver Support

Program

North Shore Community Resources

201-935 Marine Drive

(Capilano Mall)

North Vancouver, BC

V7P 1S3

Tel: 604-985-7138

Fax: 604-985-0645

The Caregiver Support Program provides the following types of

programs and activities:

● Family Caregiver Network groups

● stress management and relaxation workshops

● telephone support and individual consultation

● educational workshops

• information and referral to community services

• library with books, videos, and other educational

You’re not alone.

We’re here to help.

Are you a family caregiver?

You are if you provide any of the following types of assistance

to a friend or family member:

● personal care: dressing, bathing, eating

● household work: house cleaning, shopping, errands,

preparing meals, yard work

● coordinating care: transportation, appointments,

arranging services, visiting

● support: phone check-in, supervision, emotional

support

● nursing care: giving medication, changing dressings

Resources for Family Caregivers

BC 211 Info Line...........................................................................................................211

Capilano Community Services Society........................................................604-988-7115

Crisis Line (24/7).........................................................................................604-872-3311

Health Link Nurse Line (24/7)......................................................................................811

Lions Gate Hospice Society.........................................................................604-988-2312

Lions Gate Hospital.....................................................................................604-988-3131

North Shore Disability Resource Centre……………………….............................604-985-5371

North Shore Home and Community Care……………………………….................604-986-7111

North Shore Grief Recovery.......................................................................604-979-1600

North Shore Palliative Care Program..........................................................604-984-3743

Seniors’ Peer Support Program...................................................................604-987-8138

Older Adult Mental Health..........................................................................604-904-6200

Seniors’ One Stop............................................................604-983-3303 or 604-925-7474

Contact Karyn by email a karyn.davies@nscr.bc.ca or by phone at 604-982-3320.