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Newsletter, Fall
1999
Good News for
Caregivers
Recently two organizations made announcements about the needs of family
caregivers. The first was by CARP, Canada's association for the
fifty-plus, a national independent organization. In June they published
the results of a study on home care and caregiving that was conducted by
researchers at Queen's University, Kingston. The recommendations from
this study are being shared with the Ontario and Federal governments.
It is estimated that about 3 million
Canadians, mostly women, provide informal care at home to their spouses,
parents or other family members and friends. They begin their caregiving
role with little or no training, and often no warning. They face
financial hardships and suffer emotional and physical exhaustion. They
often do not know where to turn for help.
Without the help of family caregivers,
the shift in healthcare from institutions to community and home would not
be possible. Allan Rock, Federal Minister of Health is very aware of the
problem. He said, "Stress (on caregivers) is often at unbearable levels
and despite exhaustion, career sacrifices and financial hardships, studies
tell us that many caregivers experience guilt about not doing more. This
situation is unfair to everyone and it's only going to get worse."
The CARP report makes several
recommendations with the first one being: "To ensure effective home
care, the role of the caregiver must be given primary attention."
Training:
It is recommended that
caregivers receive training in their homes. However, no community-based
agencies receive funding to provide such education to caregivers about the
disease or infirmity of their care recipient.
Compensation:
Caregivers who leave the work force to care for family members should
receive tax credit adjustments for Employment Insurance (EI) and Canada
Pension Plan (CPP). Tax credits should be increased to reflect the real
costs for out-of- pocket expenses faced by family caregivers who provide
care at home.
Sustaining the Caregiver:
A 24-hour toll-free information network for caregivers should be developed
and widely publicized to provide ongoing training, support, advice and
advocacy. Family caregivers need to be encouraged to look after
themselves through in-home programs on stress management, nutrition,
finances, etc. Family caregivers need services to ensure sufficient
respite, transportation, home making and proper nutrition.
Re-entry:
Programs should be developed to help caregivers resume their lives after
caregiving, especially those who have been providing care for over six
months. The programs should address emotional, psychological, financial,
educational and other needs, including training, re-training and updating
for jobs.
While these recommendations continue
to be considered by government, another announcement was made which will
benefit family caregivers.
Provincial Alzheimer Strategy
The Ontario
Government recently announced that it will invest $68.4 million over five
years in a 10-point strategy. Elizabeth Witmer, Minister of Health and
Long-Term Care stated that "This is the first comprehensive, multi-faceted
provincial strategy on Alzheimer Disease to be introduced in Canada. It
will improve the quality of life of those with Alzheimer Disease and
provide support to the families who care for them."
Alzheimer Disease is the most common
dementia affecting elderly people, although it has also been diagnosed in
those as young as 40. It is a deteriorating brain disease that eventually
ends in death. In Ontario, more than 100,000 people live with the
disease, 90 percent of whom are over the age of 65. With Ontario's
growing and aging population, it is expected that Alzheimer Disease and
related dementia will increase significantly in coming years.
Here are some highlights of where the
funding will be invested:
- A
public education co-ordinator will be hired for each of the 39 local
Alzheimer Societies in Ontario to raise awareness of the disease,
recruit volunteers, develop and facilitate caregiver support groups and
coordinate training events.
-
Respite services to caregivers will be expanded by the creation of new
Alzheimer day program spaces and the expansion of Alzheimer volunteer
respite programs. In addition there will be increased annual spending
on long-term care community services.
-
There will be a more coordinated effort to provide Alzheimer clients and
families with more consistent and accessible specialized diagnostic and
treatment services.
-
Family physicians will have the opportunity to receive training to
assist them in the early detection and diagnosis of Alzheimer Disease
and related dementia, and to guide them in how best to use local
community services.
For
information about the Alzheimer strategy please contact the Alzheimer
Society of Muskoka at 645-5621 or 1-800-605-2075 or the Alzheimer Society
of North Bay and District which serves the District of Parry Sound at
704-495-4342.
If I Had My Life To Live
I would have talked less and
listened more.
I would have invited friends over to
dinner even if the carpet was stained and the sofa faded.
I would have eaten the popcorn in the
"good" living room and worried much less about the dirt when someone
wanted to light a fire in the fireplace.
I would have taken the time to listen to
my grandfather ramble about his youth.
I would never have insisted the car
windows be rolled up on a summer day because my hair had just been teased
and sprayed.
I would have burned the pink candle
sculpted like a rose before it melted in storage.
I would have sat on the lawn with my
children and not worried about grass stains.
I would have cried and laughed less while
watching television and more while watching life.
I would have shared more of the
responsibility carried by my husband.
I would have gone to bed when I was sick
instead of pretending the earth would go into a holding pattern if I
weren't there for the day.
I would never have bought anything just
because it was practical, wouldn't show soil or was guaranteed to last a
lifetime.
Instead of wishing away nine months of
pregnancy, I'd have cherished every moment and realized that the
wonderment growing inside me was the only chance in life to assist God in
a miracle.
When my kids kissed me impetuously, I
would never have said, "Later. Now go get washed up for dinner."
There would have been more "I love yous"...and
more "I"m sorrys"...but mostly, given another shot at life, I would seize
every minute, look at it and really see it...live it...and never give it
back.
By Erma Bombeck
Hospice - A History of Caring Volunteers
Palliative care
is about living and the meaning of life. It's about loss and grief and
joy. It's about giving and receiving. It's about caring and sharing.
It's about tears and laughter. These short words may sound trite but they
are not. They are very powerful words when acted upon. In short,
palliative care is about life, not death. We must always remember that.
Dr. Dorothy Ley.
The words palliative care and hospice are
used interchangeably. Both words describe an approach to care that
considers the whole person - their physical, emotional and spiritual
needs. "When all that can be done to cure has been done and to no avail,
then the focus must shift to improving the quality of life that remains."
said Dr. Ley.
The roots of hospice go back to the
fourth century A.D. when a hospice was established for Christian pilgrims
by a monk in Rome. Subsequently, many small hospices were contained in
monasteries throughout Europe. These hospices of the past were resting
places that nursed both the body and the spirit. The people who sought
refuge here were called "My Lords the Sick" and that is how they were
treated. Gradually as society changed, as we moved through the Industrial
Revolution and embraced modern medicine, the idea of hospice declined. It
was not until the 1960's that Dr. Cicely Saunders revived the modern
hospice movement in London, England.
There are several aspects of palliative
care that make it unique. First, a terminally-ill person who chooses
palliative care should have the right to choose the type of care they will
receive and where it will be given. Second, there should be a skilled
interdisciplinary team - including the person who is dying, their family,
volunteers, home support and medical care professionals. Third, there
should be an emphasis on pain and symptom control; new drugs and improved
techniques for pain management now exist.
"Death is a spiritual event. Its
nearness creates a desire to identify and strengthen what is of value in
one's life. We want to tidy up the ends, to put first things first. To
be unable to do so can generate a desolate feeling of meaningless. ...Our
role as caregivers is to give people the opportunity and the time to work
through and solve their own problems - to find their own meanings. We may
need to be no more than a presence. We can give them freedom and space by
controlling their physical pain. We can walk beside them on their
journey. We can understand them because of our own experiences, our own
pain, our own mortality. The concept of the wounded healer is at the root
of modern hospice care." (From The Heart of Hospice by Dr. Dorothy C.H.
Ley with Harry Van Bommel)
Elder Abuse - There is Still Much To Be Done
Unfortunately elder abuse has existed in relative isolation due, in part
to insufficient reporting of incidents of abuse. According to a national
survey, 4% of Canadians over the age of 60 are abused. There is much to
be done if this statistic is correct. Emotional and financial abuse are
more common than physical abuse. In fact it has been suggested that abuse
escalates from emotional to financial and ultimately to physical abuse if
intervention does not occur.
Seniors tend not to report abuse for many
different reasons - they may not recognize their situation is abusive,
they feel they can manage it; they feel they deserve it because they are a
burden to their caregiver; they are ashamed to tell anyone; they fear they
will be abandoned or put in an institution; and/or they fear retaliation
from the abuser. The need to have control is a reason for not reporting
abuse in the mind of the abused - no matter how little the control is.
Many incidents of abuse happen within the
family environment. The everyday pressure of caregiving may lead to
caregiver stress and be a contributing factor in elder abuse. The family
member may be ill- prepared to provide care, may be isolated from personal
and/or community support or may be experiencing stress due to financial
problems or substance abuse.
What should you do if you suspect abuse?
If you notice something has changed in the person's life affecting their
well-being, mental or physical, without reason, inquire. If you are still
not satisfied, inquire further. Give the senior an opportunity to tell you
if he/she is being abused. Never ask questions in front of someone you
expect is abusive. Ask non- threatening questions such as: Is everything
going all right at home? Are you having any problems getting to town?
Are you getting all the help you need? Questions that pose a threat to
what little balance the victim has in his/her life will convince him/her
to remain quiet and not discuss him/her situation. Later in privacy write
down everything that was said and note how he/she looked, reacted, and
tone of voice. This will help sort the reality of the situation in your
mind and clarify both the problem and the type of required intervention.
It will also help your memory if intervention occurs at a later date. The
most important skill you have to support an abused older adult is your
ability to listen.
For a list of some resources to contact
for help, please call the Muskoka Network Against Elder Abuse at
1-800-777-2205 or 646-7677.
The police should always be called in
every situation where the victim's life or immediate safety is in jeopardy
or where they are the victim of a criminal offence. (Community Elder
Abuse Protocol)
Seven Caregiving Principles
- The
healthiest way to care for another is to care for yourself.
-
Acknowledge your feelings; focus on your emotions.
- To
be close, you must establish boundaries.
- In
accepting the helplessness of your helping, you become a better
caregiver.
-
Caregiving is more than giving care it is receiving care.
- As a
caregiver your strength is in your flexibility.
- In
the everydayness of your caregiving lies something more - sacredness.
-
Caregiver Tip: Soft music during meals aids swallowing, relaxes muscles
in the throat and reduces choking.
A Parting Thought
What greater thing is there
for two human souls,
than to feel that
they are joined for life...
To strengthen each
other in all labour
to rest on each other
in all sorrow
to minister to each
other in all pain
to be one with each
other in silent unspeakable memories
at the moment of the
last parting...
George Eliot
Prayer For Senility
(These
gems were found on the Internet)
God grant me the Senility to forget the
people I never liked anyway, the good fortune to run into the ones I do,
and the eyesight to tell the difference.
Now that I'm older, here's what I've
discovered: I started out with nothing, I still have most of it. My wild
oats have turned to prunes and All Bran. I finally got my head together,
now my body is falling apart.
It is easier to get older than it is to
get wiser.
If God wanted me to touch my toes, he
would have put them on my knees.
When you're finally holding all the
cards, why does everyone else decide to play chess?
Views on Aging
(This
article was found on the Internet)
Do you realize that the only time in our
lives when we like to get old is when we're kids? If you're less than ten
years old, you're so excited about aging that you think in fractions.
"How old are you?" "I'm four and a
half." You're never 36 and a half, you're four and a half going on 5.
You get into your teens; now they can't
hold you back. You jump to the next number. "How old are you?" "I'm
gonna be 16." You could be 12, but you're going to be 16. Eventually.
Then the great day of your life; you
become 21. Even the words sound like a ceremony. You BECOME 21!!
Then you turn 30. What happened there?
Makes you sound like bad milk. He TURNED; we had to throw him out.
What's wrong? What Changed? You BECOME 21; you TURN 30. Then you're
PUSHING 40...stay over there. You REACH 50; then you MAKE it to 60.
By then you've built up so much speed,
you HIT 70. After that, it's a day by day thing. You HIT Wednesday...
You get into your 80's; you HIT lunch, you HIT 4:30. My Grandmother won't
even buy green bananas. "Well, it's an investment, you know, and maybe a
bad one." And it doesn't end there...
Into the 90's, you start going
backwards. "I was Just 92." Then a strange thing happens; if you make
it over 100, you become a little kid again. "I'm 100 and a half." Happy
aging!
Caregiver Get-togethers
Join
other caregivers to share information and practical tips, hear special
guest speakers, laugh, enjoy refreshments and learn that YOU ARE NOT
ALONE. Everyone is welcome.
In Huntsville at
Rogers Cove Retirement Home on the first Wednesday of each month from 1:00
- 3:00 p.m.
In Gravenhurst at Gravenhurst Manor on
the fourth Monday of each month from 1:30 - 3:30 p.m.
If you would like to have a caregiver
group in your community, please call Karen Harmon at Caregiver Support
Network 646-7677 or 1- 800-777-2205.
Joey Gilroy
Joey
Gilroy was a founding member of Caregivers Voice and is sadly missed, not
only by those who knew her personally, but by those whose lives she
touched. Joey died November 1st following a brief illness. Her
compassion, enthusiasm and humour brought joy and comfort to many. Her
life was an inspiration to others and we remember her lovingly.
Behind The Scenes
A sincere thank you is
offered to the many volunteers who give their time as directors on the
boards of the three organizations that comprise Caregivers Support
Network. Because of their dedication and enthusiasm, many community
services are available.
Caregivers Muskoka/Parry Sound
Joyce Beaton,
Baysville
Marylou Coggins,
Huntsville
Maria Duncalf,
Bracebridge
Marlene Irwin,
Gravenhurst
Doreen Murray, Port
Carling, Chairperson
Jean Spence,
Huntsville
Kay Taylor,
Bracebridge
Eleanor Thorel, Port
Carling
Karen Harmon,
Executive Director
Hospice Muskoka
Ruth Bell-Towns,
Bracebridge
Jane Caughey,
Bracebridge
Marilyn Chute,
Gravenhurst
Paul Dempsey,
Bracebridge
Pat Holstock,
Gravenhurst
Narayanan Krishnan,
Bracebridge
Owen Mellow,
Bracebridge
Margaret Michalski,
Bracebridge, Chairperson
Sue Mullen-Gibson,
Bracebridge
Sharron Oliphant,
Glen Orchard
Joy Terry, Muskoka
Falls
Eva West, Bracebridge
Sandra Winspear,
Bracebridge, Coordinator
Muskoka Network Against Elder Abuse
Ruth Binks,
Huntsville
Shirley Boon,
Huntsville
Shelley Dryla,
Huntsville
Rita Fallows,
Baysville
Fran Gower, Dwight
Douglas Graves,
Huntsville
Shannon Graves, Port
Sydney
Debra Johnson,
Huntsville
Allan McLaren,
Baysville, Chairperson
Pauline Mintz,
Huntsville
Marg Pigeon,
Huntsville
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