the family caregivers’ grapevine - nscr › information › caregiver › jan feb...
TRANSCRIPT
A bi-monthly newsletter published by the
Supporting Family Caregivers Across the Lifespan Project
T h e Fa m i l y C a r e g i v e r s ’
G r a p e v i n e
January/February 2012
This article originally appeared in The North Shore
News on March 27, 2011. Reprinted with permission.
David and Sharon Moxon are graduates of a
ground-breaking learning program new to the
North Shore. Designed for people with mem-
ory challenges and their partners, North
Shore Memories and More takes the focus off
the condition and places it on the individual.
"When we heard about the program, we
thought, 'This could be really interesting. Here
is something we can do together,'" Sharon
says.
In 2000, the Moxons realized their long-term
plan to retire to the West Coast, choosing
North Vancouver to be close to friends and
family. They were living an active, outdoor
life, taking on new experiences and making
new friends. Then, in 2008, David was diag-
nosed with early-onset Alzheimer's disease.
Often, a diagnosis of Alzheimer's or other
forms of dementia disrupts people's lives. As
they focus increasingly on the condition, so-
cial habits tend to fall away.
Not so for the Moxons. They made it their pri-
ority to maintain their lifestyle, staying con-
nected with family and friends, continuing
with hiking and biking, tennis and travel. In
Mexico last year they found Luna, "a Mexican
rescue dog," says Sharon.
"No, no," David clarifies, "Luna is a rescue dog
from Mexico."
North Shore Memories and More
By Laura Anderson
The Family Caregivers’ Grapevine Page 2
Luna is part of the family, her care shared be-
tween the two, with Sharon taking on training
and David in charge of walks.
After David was diagnosed, the couple edu-
cated themselves about resources and com-
munity programs, linking up with the Alz-
heimer Society of BC and the North Shore
Family Caregiver Support Program where they
learned about North Shore Memories and
More. The program, designed for caregivers
and care receivers, or care partners to partici-
pate in together, aligns with the active and in-
volved life David and Sharon have created for
themselves. Information, resources and refer-
rals are provided throughout the program but
memory is not the main focus. Every aspect of
the program is designed to stimulate and en-
courage participation. A sense of humour, for
example, is not lost along with memory,
though it may change.
"That's why the group is so good," says
Sharon. "So much of the person is still there
inside and there is so much they can do.
We're all at different stages in the journey but
everyone is equally engaged and involved in
sharing ideas and opinions. We enjoyed every
moment of the program but the camaraderie
with the other participants was so valuable.
It's hard to explain what it means to sit
around a table with a group of people and
laugh.
"This is a happy story for us," says Sharon.
"Memories and More brought laughter and
lightness to our lives. It brought us new
friends and new experiences to share with
them. Our hope is that by sharing our story, it
will spark an interest in others to try this."
North Shore Memories and More continued from page 1
The next session of North Shore
Memories and More begins on Thurs-
day February 16, 2012, 1:30 to 3:30.
For more information contact Julie
Doresemaine at 604-984-6414,
[email protected]. Registra-
tions is required.
None of us can predict when we might
become incapable of managing our day to day
financial affairs or when we might become
physically disabled to the extent that we
cannot sign documents. A simple fall off a
ladder or a car crash can happen at any age
with devastating legal consequences, let
alone all the physical, mental and emotional
ones.
The most important legal document everyone
should have in place is a Power of Attorney,
no matter what your financial situation is.
Even if all assets are held jointly with your
spouse, you cannot file tax returns, nor can
you sell or remortgage a home. If your spouse
becomes incapacitated and you don’t have
Power of Attorney you cannot fully deal with
other assets without first applying to the
court to become a committee, a costly and
time-consuming legal procedure.
Given that a Power of Attorney is important
to have in place, it should be done as soon as
possible before accident or illness renders you
incapable.
What is the test for capacity?
Many of you will have heard of the Mini
Mental Status Exam often given by doctors. Its
most memorable feature is counting down
from 100 by 7’s. Doctors use this test to
screen for mental impairment and sometimes
tell lawyers that a client/patient is not
mentally capable of giving instructions for
signing a Power of Attorney based on the
exam results. That may indeed be the case.
However, the capacity test for Powers of
Attorney is very specific and is now set out in
the new law that came into effect in
September 2011. It firstly assumes that you
are capable. If there is some doubt, then you
must demonstrate the following to the
satisfaction of the lawyer:
• your knowledge of your assets and their
approximate value
• your knowledge of obligations to
dependants
• your understanding that the person
you’ve appointed can do anything that
you could do with your legal and
financial affairs with some important
exceptions
• your understanding that, unless the
attorney manages your affairs prudently,
the value may decline
• your understanding that the attorney
might abuse the trust placed in him or
her
• your understanding that you may revoke
the Power of Attorney at any time,
unless you become incapable.
Underlying this test is the fact that you must
know who you are, that you are talking to
your lawyer and that you are discussing a
Power of Attorney. No one else may help with
answers or even be present.
continued page 4
Legally Speaking: Planning for Incapacity
by Jackie Morris
Page 3 January/February 2012
The Family Caregivers’ Grapevine Page 4
When someone is in failing health, there may be good and bad days. There may be times of
the day when the person is more alert. The lawyer need only be satisfied with responses
when taking instructions and in witnessing the person’s signature. Timing may be crucial, but
the better plan is to not delay. Get it done and tuck it away.
Websites of Interest
Alzheimer Society of British Columbia
The Alzheimer Society of British Columbia’s
website, www.alzheimerbc.org, is an excel-
lent starting point for anyone who would like
to find out more about Alzheimer disease,
other dementia’s and where to find re-
sources.
The site offers information for those who
have been diagnosed with a dementia and for
those who are caring for someone affected by
it. Anyone can subscribe to their free quar-
terly bulletin, InSight that offers helpful
strategies.
The Alzheimer Society of BC is active in advo-
cating for people with Alzheimer’s and the
website is a good place to find out about cur-
rent issues in dementia support.
Legally Speaking: Planning for Incapacity
continued from page 3
“None of us can predict when we might become incapable
of managing our day to day financial affairs...”
Keystone Eldercare Solutions
In the Fall, North Shore Community Re-
sources Caregiver Support Project con-
ducted a series of well-attended webinars
that were not only informative but they
also generated meaningful discussion
among participants. Gerontologist Wendy
Johnstone of Keystone Eldercare Solu-
tions, presented two sessions, Coping with
the Transitions to Care and Communicat-
ing with Residential Care staff. She shared
a wealth of information.
On her website Keystone Eldercare Solu-
tions, www.keystoneeldercare.com.
Johnstone explores a range of caregiving
issues on her blog such as grief, respite
and life balance. Also posted on the web-
site under “Resources” are articles she has
written for The Comox Valley Record.
Page 5
Renewal and rejuvenation – they’re words
that conjure up fluffy bath robes and spa
treatments. Caregivers may regard renewal
and rejuvenation as indulgences that just
don’t have a place in their lives. The best way
for caregivers to ensure their own good health
and that of the person they’re caring for, how-
ever, is to take time to look after themselves.
Respite is an opportunity to get that break.
Turns out it’s not a luxury; it’s an important
practice for staying healthy.
One in five people over the age of 45 are en-
gaged in some form of caregiving, and of
those, most work outside the home. In recent
years, the shift away from institutional care
has meant that even more caregiving than
ever before is being provided at home by fam-
ily or friends.
Caregivers report that looking after their
friend or relative can be a meaningful and sat-
isfying experience.Along with its rewards,
caregiving can take a toll on physical and emo-
tional health and can eventually lead to burn-
out. Early signs of burnout include waning en-
ergy, lowered productivity and loss of motiva-
tion. If unaddressed, burnout may contribute
to back and muscle pain, hypertension, de-
pression and eventually to physical and emo-
tional exhaustion. The goal is to prevent burn-
out by watching for those early signs and tak-
ing regular breaks.
Respite takes a number of forms and can be
different for each individual. A replacement
caregiver may come to the home for a few
hours or stay several days. The person in need
of care may be enrolled in a day program, or
they could stay overnight at a specialized care
centre.
Respite can be informal. Friends, family,
neighbours and acquaintances can be an im-
portant source of support. They often have a
desire to help, but may not know what they
can do. They can be asked to help with a spe-
cific task, such as odd jobs around the house,
once a week, or even once a month.
Caregivers need to take regular breaks even
before the person they’re caring for needs
someone on site to look after them. Taking
time for themselves every day is a good start.
They should choose an activity they enjoy and
that helps them feel in touch with themselves
and the outside world - whether it’s a yoga
class, a walk or some uninterrupted reading.
The key is that caregivers need to stay active
and connected to their social network.
continued on page 6
Rest and Rejuvenation
by Josie Padro
January/February 2012
Book Review: Creating Moments of Joy
by Josie Padro
The Family Caregivers’ Grapevine Page 6
Respite is available through a number of public and private agencies. The Health and Home
Care Society of BC operates the Family Respite Centre (www.carebc.ca, 604-327-9525) where
those in need of care can stay overnight for up to 30 days. Vancouver Coastal Health has res-
pite beds and operates two adult day programs on the North Shore, Margaret Fulton and
West Vancouver Adult Day Centre. For more information on accessing these services contact
Vancouver Coastal Health Home and Community Care Program at 604-986-7111.
North Shore Community Resources has a list of Home Support Agencies on the North Shore—
many of whom offer respite services. For more information on respite, caregiver support and
how to access it, contact Caregiver Support at www.nscr.bc.ca, 604-985-7138.
The reality is rest and rejuvenation play an important role in a person’s ability to cope and
continue providing good care. Taking time to engage in meaningful activities is a way for care-
givers to stay healthy, and it just may include an afternoon at the spa—fluffy robe and all.
Using a gentle and reassuring style, Jolene Brackey offers
insight into the thought processes of those with dementia.
She leads the reader through scenarios that can arise and
offers examples of how to deal with them.
Brackey advises caregivers to take cues from the person
with dementia. For example, if the person was a fisherman,
allow him to show you how to cast. If the person used to set
the table every day, give them an opportunity to do it again.
She reminds readers to take joy in activities such as reading
aloud and listening to music.
Most importantly Brackey offers hope that the person with
dementia can still share meaningful times with those they
love. Not only can those moments be meaningful, but they
can also contain humour and joy.
Rest and Rejuvenation continued from page 5
January/February 2012 Page 7
Keeping Your Heart Healthy
By Josie Padro
February is Heart Month. The Heart and Stroke Foundation www.heartandstroke.com, sug-
gests a number of simple ways to reduce stress and keep your heart strong.
Stretch
Signs of tension often show up as a head-
ache, neck discomfort, or a tightly
clenched jaw.
Find a quiet place to sit
or stand. Close your eyes
and gently move your
head front to back sev-
eral times, as if you’re
nodding “yes.” With
your eyes still closed,
gently move your head
from side to side as if
your nodding “no.” Open
your mouth wide and stretch the muscles
in your jaw. (If any of these movements
cause pain, stop and consult with your
health care provider.)
Breath Deeply
Take three deep, slow breaths. With each
breath think about gently filling your lungs;
hold the breath for a moment, then
breathe out slowly. Taking those three
mindful breaths can dissipate stress and
help you carry on with your day.
Get a good rest
Sleep provides the body with
an opportunity to regenerate and renew
it’s resources.
Some studies have found that lavender has
a calming effect and helps those who have
difficulty sleeping. Place dried lavender
flowers in a satchel and slide it under your
pillow at night or add them to your bath
water. (Dried lavender can be ordered
through health food and craft stores.)
Check with your physician to avoid prob-
lems with allergies or medication
interactions.
Go for a stroll
The health benefits of walking are well docu-
mented. The activity gets your muscles mov-
ing, your blood circulating and your heart
pumping. For even greater health benefits,
invite a friend to go along
with you. You’ll feel more
connected and you might
even share a good cry or a
good laugh.
The Family Caregivers’ Grapevine Page 8
Medications and the Dementias
by Josie Padro
In recent years improvements have been
made in caring for those who live with de-
mentia. Research has led to new treatment
approaches and a new generation of drugs are
slowing the progression of the disease.
According to Dr. Stephan Kiraly, a geriatric psy-
chiatrist, there are a number of conditions
that cause dementia. Alzheimer’s disease is
only one of those. Many others exist including
frontotemportal dementia and vascular de-
mentia, which may be the result of stroke.
While there is no cure for these types of de-
mentia, there are medications that may delay
progression of mild to moderate dementia.
Studies have found that if medications are
started early, there is a chance the disease
progression can be delayed by up to two
years.
Dementia often begins with vague symptoms.
In his practice, Dr. Kiraly finds the symptoms
that surface first are depression, anxiety or
sleep problems, all of which may be the result
of the person’s increasing distress over their
loss of mental functioning. These problems
are treated in the same way as they would be
in a person without dementia.
It’s no surprise that with all these symptoms,
a person with dementia can end up on a
whole host of medications. In addition, other
medical problems, unrelated to the dementia,
may develop such as diabetes and thyroid dis-
ease, which can also add to the already sub-
stantial pile of daily pills.
Dr. Kiraly points out the goal of treatment is to
use the fewest medications possible at the
lowest doses.
continued on page 9
Overheard at the World Volunteer Conference:
In response to the observation that volunteers are too often seen as
amateurs: "Just remember: Noah's Ark was built by amateurs. The
Titanic was built by professionals."
—www.energizeinc.com
Laugh lines
The important thing, he says, is that medica-
tion should be periodically re-evaluated, and
at times, it may be appropriate to stop a
medication to assess whether it is still neces-
sary.
Keeping track of each medication in addition
to learning about how to care for a family
member with dementia can be an over-
whelming task. Dr. Kiraly advises families to
learn as much as they can about dementia
through sources such as the Alzheimer’s Soci-
ety of BC and by sharing their experiences in
support groups. North Shore Community Re-
sources Society Caregiver Support also offers
support (network) groups. Pharmacists are an
excellent resource as they can explain how
medications work and what side effects or
possible interactions to watch for.
There’s no doubt those with dementia and
their caregivers can be faced with a dizzying
array of medications. Understanding those
medications and ensuring they are achieving
the intended effect requires careful attention
from both the health care provider and the
caregiver. Luckily, advances in the understand-
ing of how to manage dementias has meant a
better quality of life for people with dementia
and those caring for them.
Page 9 January/February 2012
Medications and the Dementias continued
10 Warning Signs of Dementia
1. Memory loss that affects day-to-day
functioning
2. Difficulty performing difficult tasks
3. Problems with language
4. Disoriented to time and place
5. Poor or decreased judgment
6. Problems with abstract thinking
7. Misplacing things – placing everyday
objects in places where they don’t
belong
8. Changes in mood and behaviour
9. Changes in personality
10. Loss of initiative – may need prompt-
ing to perform normal activities.
—The Alzheimer Society of BC
http://alzheimerbc.org
Where to Turn
The Clinic for Alzheimer Disease and Related
Disorders, http://ubc-alzclinic.vch.ca, is lo-
cated at the UBC Hospital. Patients referred
to the clinic by their family doctor clinic are
assessed medically and given a series of neu-
rological tests. They are also seen by a ge-
netic counsellor and social worker. Test re-
sults are reviewed at a family conference and
possible community supports are discussed.
Patients are followed-up yearly. Contact the
clinic by phone at 604-822-7031.
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 Supporting Caregivers
Across the Lifespan Project
is located at:
North Shore Community Resources
201-935 Marine Drive
(Capilano Mall)
North Vancouver, BC
V7P 1S3
Tel: 604-985-7138
Fax: 604-985-0645
This project is funded by the Government of Canada’s Social
Development Partnerships Program. The opinions and
interpretations in this publication are those of the
authors and do not necessarily reflect those of the Government
of Canada.
The Supporting Caregivers Across the Lifespan Project
The Project provides:
● Education sessions for family caregivers
● Social recreation programs
● Expressive arts programming
● Tele-learning education sessions for family caregivers
(educational workshops over the phone)
● Education for professionals working with family caregivers
● Education for employers
Additional activities provided by the Caregiver Support Program:
● 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
resources
The Supporting Caregivers Across the Lifespan Project works in
partnership with the North Shore Caregiver Support Program.
Together we provide a wide variety of educational workshops,
caregiver support and resources for family and friends
supporting someone with an illness or disability.
You’re not alone.
We’re here to help.
Are you a family caregiver?
You are if you provide a family member or friend who is
chronically ill, elderly, palliative or living with a disability with
any of the following types of assistance:
● Personal Care: dressing, bathing, eating
● Household Work: house cleaning, shopping/errands,
preparing meals, yard work
● Coordination of Care: transportation, appointments,
arranging services, visiting
● Support: phone check-in, supervision, emotional
support
● Nursing Care: medication, changing dressings
For more information, contact Helen at 604-982-3313 or [email protected].