A bi-monthly newsletter published by the Supporting Family … · 2017. 4. 16. · The Caring...
Transcript of A bi-monthly newsletter published by the Supporting Family … · 2017. 4. 16. · The Caring...
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
[email protected] 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:
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 [email protected] or by phone at 604-982-3320.