A Caregiver's Guide to by jim.i.am


									A Caregiver's Guide to


                                                          Caregiver stories
                                                          Physical therapy
                                                          Healthy living
                                                          Drug coverage

              This publication is in partnership with Stroke Recovery Canada,
   CANADA     a program of March of Dimes Canada
                                                                            “In my travels across
                                                                                  Canada, I have
                                                                           met many caregivers
                                                                                       who amaze
                                                                                and inspire me.”

Published by BioMed Content Group Inc. in partnership with Stroke Recovery Canada, a program of
March of Dimes Canada. Special issue to A Patient’s Guide to Medical Information.
Canadian Publications Mail Sales Agr #40827503. Return undeliverable to 36 Toronto St., Suite 850, Toronto, Ontario M5C 2C5.

This publication was made possible by a grant from Allergan Canada (www.botox.ca).
    Saluting Stroke Caregivers

      n my travels across Canada,
      I have met many caregivers                                        Table of Contents
      who amaze and inspire me.
These are people who are not                                       4 Caregiver stories
letting the challenges of caregiving
mean an end to their happiness                                     7 Your partner for healthy
                                                                        living: exercise & nutrition
and independence. Instead, they
have learned how to take care
                                                                   10 Physical therapy
of themselves while helping
their stroke survivors thrive.                                     12 Spasticity medical update
   Studies have shown that the
attitude of the caregiver has a                                    17 Occupational therapy
direct impact on the health and
well-being of the stroke survivor.                                 18 Overcoming depression
In this premiere issue of A
Caregiver’s Guide to Stroke Recovery                               20 Intimate relationships
you will find information and tips
on how to be an effective caregiver                                21 Fight with all you’ve got:
and how to best motivate your                                           a patient’s story
stroke survivor to achieve optimal
rehabilitation. At Stroke Recovery                                 23 Set sail for rehabilitation
Canada, a program of March of
                                                                   26 A guide to Canadian
Dimes Canada, we are dedicated
                                                                         drug coverage
to helping you and your loved
one live as empowered and                                          28 Services of Stroke
independently as possible. Contact                                       Recovery Canada
us to find programs and services
in your community.                                                 32 Caregiver’s bill of rights
Kimberley Dowds, Associate Director,
March of Dimes Canada

A C A R E G I V E R ’ S G U I D E TO S T R O K E R E C O V E R Y                                       3
Life as a Caregiver
A measured approach                    we could
                                       be thankful
Pat Bonnell had a stroke 26 years      for. The
ago. At the time, she and her          support of
husband Don were deeply                our families
immersed in their work, having         helped
                                                         Don and Pat Bonnell
started a small business five years    tremendously.
earlier. After Pat’s stroke, Don       We persisted in seeking help, and
continued to operate the business,     participated in all the rehabilitation
and being self-employed he was         programs that were offered. This
able to get away during the day        strategy worked. Over the years,
to visit Pat at the hospital.          Pat has showed great improvement
   “Pat had many problems as a         in function, including spasticity.”
result of her stroke,” recalls Don.      It took several years of physical
“She had neurological deficits,        therapy, exercises and daily efforts
became legally blind and               to walk to alleviate spasticity in
developed spasticity (muscle           Pat’s leg. “My arm was affected
tightness in her left arm and leg).”   even more than my leg,” says Pat.
Because of spasticity, Pat had         “I could only manage to stretch
difficulty walking, her left arm was   out my arm with two hours of
bent up to her left shoulder, and      physical therapy and exercises per
her left hand could not be opened.     day; with anything less, my arm
Initially, Pat had to be helped with   would bend again. Last year, my
most of her daily tasks. “Her          physical therapist recommended
improvement was very slow,” says       Botox injections (a treatment that
Don, “but we consciously decided       relaxes muscles) to make it
to adopt a positive attitude and to    easier to stretch out the muscles
frequently think about the things      in my arm. This worked. The

4                                                           A CAREGIVER’S GUIDE
   improvement in my arm also               stroke. Although her parents
   helped my walking because my             Micheline and Ed were divorced,
   posture became straighter.” Don          they quickly committed to working
   says that treating Pat’s spasticity      together to help their daughter.
   helped him also. “Pat is able to         Catherine’s stroke had made them
   dress and walk better, and I don’t       realize that nothing in life can be
   have to assist her as much.”             taken for granted, and they must
      Pat’s can-do attitude has made        cherish every moment. Ed,
   all the difference. She joined Stroke    Micheline and Catherine’s older
   Recovery Canada very early on,           sister Anne-Marie took turns being
   getting social support through           with Catherine at the hospital, and
   friendships with other stroke            later at the rehabilitation center
   survivor couples. “Optimism is a         and at home. It hasn’t been easy,
   key requirement,” says Don. “It’s        but nine years later, Catherine has
   easy to feel sorry for yourself,         overcome tremendous challenges
   especially in the initial stages after   and is preparing to go to
   a stroke, but this never helps. As       University.
   a caregiver, you must encourage            When asked what helped
   and assist the stroke survivor. The      the most, Micheline says, “We
   person you love is still the same        considered ourselves part of the
   person after a stroke. Work with         rehabilitation team, together with
   them and help them achieve as            the doctors, nurses and therapists.
   much independence as will be safe        We constantly tried to learn as
   for them. It’s very rewarding to see     much as we could about stroke
   your loved one rehabilitate and          and advocated on our daughter’s
   enjoy life again.”                       behalf, asking medical staff to find
                                            solutions for various problems. To
  Improvement is always                     receive help, most often we only
  possible                                  needed to ask, but sometimes we
                                            had to be more persistent. We also
   Catherine Eustace was only 14
   years old when she had a massive                      Continued on next page

TO S T R O K E R E C O V E R Y                                                 5
Life as a caregiver                        Catherine can raise her left arm
                                           above her head, and her left hand
Continued from page 5                      is straighter and stronger. She
                                           also walks with less of a limp.
sought and accepted support                It just goes to show you that
from everyone: our family,                 the rehabilitation techniques are
hospital, rehabilitation center and        always advancing and Catherine’s
Catherine’s school. That way the           quality of life continues to
responsibilities were spread out,          improve.”
and nobody burned out.”                       A stroke may change what a
  The key lesson Ed learned as a           person can do, but we all have
caregiver was never to give up, that different talents. So, it’s a process
improvement is always possible.            of rediscovery. “I had to give up
“For nine years, Catherine had             snowboarding,” says Catherine,
spasticity in her left wrist and           “but I discovered painting and
ankle, interfering with her ability        golf. Immediately after the stroke,
to use her left hand and walk,” he         I was scared, and then depressed,
says. “We didn’t have a treatment          but when I saw my parents full of
for this. Only last year, Catherine’s hope and fighting for me, I also
godmother, a nurse, learned about committed to my recovery. I had
some of the newer methods to               to work hard at physical therapy
treat spasticity, and we obtained a        and at restarting my education
referral to a spasticity clinic. Now       after a two year delay. At times,
                                                            my life felt like
                                                            constant work.
                                                            But things are really
                                                            looking optimistic
                                                            now. I learned
                                                            that hard work
                                                            and commitment
                                                            can make a big
 Anne-Marie (sister), Micheline, Catherine and Ed Eustace difference.”

6                                                               A CAREGIVER’S GUIDE
  Caregiver and Stroke Survivor:
   Partner for healthy living
   Exercise promotes well-being and
   can improve the quality of life of
   stroke survivors by strengthening
   muscles and improving mobility.
   Each stroke survivor will have
   an individualized exercise routine    to five minutes, and then do the
   depending on his or her disability.   following exercises, 10-15 times
   You can partner with your stroke      each. Start with a few repetitions
   survivor for some daily exercise,     and build up gradually.
   with each of you doing your           1. Circle your arms slowly to
   own routine. Canada’s Physical          stretch the upper body.
   Activity Guide recommends that        2. Stand at a table and do small
   adults get 30 to 60 minutes of          knee bends.
   moderate physical activity per day.   3. Sit down and extend your knees.
   You can add it up in periods of at      Then, pump your ankles up and
   least 10 minutes at a time. Consult     down to stretch leg muscles.
   a physical therapist or a physician   4. Sit down, then stand up.
   for individualized exercise           5. From a standing position, go
   recommendations. Play some              up on your toes, then down.
   music and make it a fun break         6. Hold on to a table and do side
   for you and your stroke survivor,       leg raises.
   everyday.                             7. Balance on one leg (make sure
                                           you can grab onto something if
   Exercise suggestions                    needed).
   for caregivers
   March on the spot for three                       Continued on next page

TO S T R O K E R E C O V E R Y                                            7
Partner for healthy                      air comes in and out of your
                                       2. After several breaths, begin
Continued from page 7                    to breathe more deeply, with
                                         longer inhalations and longer
8. Tap step. Move your right foot        exhalations.
  forward, to the side, behind you,    3. Breathe deeply and slowly,
  and back to the starting position.      focusing all of your attention
  Do the same with the left foot.         on each breath. As you exhale,
9. Walk: in the room, the hallway         imagine the tension draining
  or anywhere else.                      from your body and mind.
                                         Notice the feeling of calm
Take a mental break                      and relaxation that comes with
Taking regular relaxation breaks         exhalation. Continue deep
can help both caregivers and             breathing for a few minutes.
stroke survivors better cope with
the challenges associated with         Nutrition
stroke recovery. Furthermore,
relaxation can decrease pain and       The quality of nutrition has a
spasticity in stroke survivors.        large impact on both physical
  One of the most basic relaxation     and emotional states. “Proper
techniques is deep breathing. Our      nutrition can speed up stroke
bodies react to stress with rapid,     recovery and provide caregivers
shallow breathing. Breathing slowly    with the energy they need to care
and deeply will help to ‘turn off ’    for their loved ones,” says Cara
the stress reaction and ‘turn on’      Rosenbloom, a registered dietitian.
the relaxation response.                  “An optimal diet is low in salt,
  Do the following together with       saturated fat and trans fat, and
your loved one:                        includes plenty of vegetables,
1. Begin by breathing normally,        fruit, whole grains and lean
  but pay attention to each breath,    protein choices (like fish),” advises
  taking a mental note of how the      Rosenbloom. “For guidelines on

8                                                           A CAREGIVER’S GUIDE
   healthy eating, refer to Canada’s       “An optimal diet is
   Food Guide.” The guide is
   available on the Web, and can       low in salt, saturated fat
   be found by simply typing in the
   name in any search engine. You
                                            and trans fat, and
   can also order a copy by calling        includes plenty of
   1-800-O-Canada (1-800-622-6232).
   The guide has a wealth of           vegetables, fruit, whole
   information, from age-adjusted
   portion sizes to tips on meal
                                        grains and lean protein
   planning and shopping.                 choices (like fish).”
   Healthy eating tips
   1. Plan your meals in advance         advance. Cook double and keep
     for one or two weeks.               leftovers in the freezer (for
   2. Read nutrition labels on           example, soups or lasagna).
     packaged food to help you         6. Make gradual improvements
     buy items that are low in trans     to your diet and stick to them.
     fat, saturated fat and sodium.    7. Work with a registered dietitian
   3. Try to consume less than           to learn other helpful tips. To
     1500 mg of sodium per day.          find a dietitian, ask your doctor
   4. Consume 2-3 tablespoons of         or visit www.dietitians.ca.
     unsaturated oils or soft non-
     hydrogenated margarine each
     day. For more information
     on healthy fats, visit
   4. Buy fresh, frozen or canned
     pre-cut vegetables for quick
     salads, stir-fries and side
   5. Prepare some foods in

TO S T R O K E R E C O V E R Y                                               9
 Don’t forget Physical therapy

         hysical therapy can help
                                       Ms. Linda Minor:
         a stroke survivor regain      Physical Therapist,
         independence through          Spasticity Clinic,
                                       The Glenrose
improving diminished mobility,         Rehabilitation
sensation, coordination, balance,      Hospital, Edmonton
strength and endurance. It also
helps alleviate the negative effects   any changes in your and your
of spasticity (stiff muscles).         stroke survivor’s needs.”
   “A physical therapist starts by        Physical therapists use a variety
assessing movement and sensory         of techniques. For example, if
loss, and by asking the stroke         the stroke survivor cannot move,
survivor and caregiver about their     the therapist will first ensure that
priorities for treatment,” explains    the person is correctly positioned
Linda Minor, physical therapist        in the bed. The therapist will also
at the Glenrose Rehabilitation         recommend changing the position
Hospital in Edmonton. “Try to          regularly to reduce muscle and
be as specific as you can when         joint stiffness. If the survivor
discussing priorities. For example,    suffers from spasticity, the
tell the therapist that you would      therapist will recommend positions
like to learn how to help your         for sitting and lying down in which
loved one transfer from the bed to     the spastic muscles are stretched.
the wheelchair or you would like to    The therapist will also design a
be able to open his or her hand to     stretching exercise routine, and
wash. The physical therapist will      may employ techniques such as
then develop an individualized         casting (i.e. using a cast to hold the
plan, working towards specific         muscles and joints in the correct
goals that you have agreed upon        position). These approaches can
together. Over time, the program       prevent the muscles and joints
will be reviewed and refined,          from becoming permanently fixed.
depending upon the progress and        If the stroke survivor has weak

10                                                           A CAREGIVER’S GUIDE
   limbs, physical therapy will start    proper techniques to assist your
   with small guided movements           stroke survivor and ensure that
   and practicing simple tasks.          neither of you get injured in
   As the strength improves, more        the process,” says Minor. “Your
   complex exercises will be initiated   therapist can also suggest exercises
   to encourage both sides of the        to do at home. For example,
   body to work together. This will      stretching exercises should be
   help the healthy parts of the         done daily, especially if spasticity
   brain to take on some functions       is a problem.”
   previously carried out by the            As a caregiver, you can play a
   damaged parts of the brain.           key role in encouraging your stroke
     Physical therapy is often carried   survivor to do his or her exercises
   out in combination with medical       and engage in other aspects of
   treatment. For example, “drug         rehabilitation. Emphasize the
   therapy may be used to help           importance of active participation,
   relax spastic muscles and allow       and also try to make it fun. Join
   the muscles to be stretched and       your stroke survivor for a daily
   positioned more effectively,”         exercise break. See exercise
   says Minor.                           suggestions for caregivers on
     Physical therapy can begin          page 7.
   as soon as the survivor is
   medically stable. It is best to
   start right away to prevent
   deconditioning of the muscles
   that can occur with prolonged
     Minor encourages
   caregivers and stroke survivors
   to maximize physical therapy
   and learn techniques they
   can use outside of therapy
   sessions. “You can learn

TO S T R O K E R E C O V E R Y                                              11
                  Medical Update
     Dr. Christos Boulias: Physiatrist,
     Neurorehabilitation services,
     West Park Healthcare Centre, Toronto
     Dr. Farooq Ismail: Physiatrist,
     Neurorehabilitation services,
     West Park Healthcare Centre, Toronto

                                               DR. BOULIAS         DR. ISMAIL

      Help for Spasticity
         pasticity is defined as              Studies show that spasticity
         uncontrollable muscle              affects more than 65% of stroke
         tightness, often accompanied       survivors, usually within three to
 by pain and reduced function, such         six months following a stroke.
 as difficulty walking and using            “Spasticity is a natural response
 the hands. The restriction of              of the brain to injury, and is aimed
 movement can make day-to-day               at increasing the tone of flaccid
 life a struggle for both the stroke        muscles,” says Dr. Christos Boulias,
 survivor and caregiver. Presently,         physiatrist at West Park Healthcare
 many stroke survivors who suffer           Centre in Toronto. “A certain
 from spasticity remain untreated           degree of spasticity is helpful to
 or undertreated, even though               restore the patient’s ability to use
 effective therapy is available. It is      the affected side of the body.
 important for caregivers to watch          However, spasticity often becomes
 for spasticity in stroke patients          excessive and negatively impacts a
 and communicate the problem to             stroke survivor’s function. The
 their doctors in order to receive          goal of treatment is to find and
 appropriate care.                          maintain the right balance.”

12                                                             A CAREGIVER’S GUIDE
     Controlling spasticity can benefit    shouldn’t be. The caregiver should
   the caregiver’s quality of life as      alert the medical team to potential
   much as the patient’s. “A patient       spasticity and ask for a referral to
   with spasticity may require a great     a spasticity clinic.”
   deal of assistance with daily living
   because his or her abilities are        Recognizing spasticity
   limited. A very spastic patient
   may even require several people to      The degree of spasticity may
   complete morning and evening            vary from mild muscle stiffness to
   routines,” says Dr. Farooq Ismail,      severe, painful and uncontrollable
   physiatrist at West Park Healthcare     muscle spasms. It may be triggered
   Centre in Toronto. “In milder           or aggravated by movement,
   cases, spasticity can affect a          emotional stress, and physical
   person’s balance, making it difficult   discomforts such as skin irritation
   to walk. Spasticity can make it         or a full bladder. Watch for a tight
   impossible for a stroke survivor        fist, bent elbow, arm pressed
   to drive, or even unclench an           against the chest, stiff knee or
   affected hand. If a clenched fist       pointed foot in your stroke
   cannot be opened to be washed,          survivor.
   a skin infection may result.
   Spasticity is often overlooked          Spasticity treatments
   because stroke survivors have
   many other problems. However, it        The treatment of spasticity aims to
                                           address specific goals. “We assess
      Controlling spasticity               the negative impacts of excessive
                                           spasticity as reported by the
                  can benefit              caregiver and patient, and make
                                           treatment decisions based on what
               the caregiver’s             the caregiver and patient want to
               quality of life             achieve,” explains Dr. Boulias.

 as much as the patient’s.                              Continued on next page

TO S T R O K E R E C O V E R Y                                                    13
Help for spasticity                        as a first line treatment for focal
                                           spasticity,” says Dr. Ismail. “These
Continued from page 13                     injections are a simple, effective
                                           treatment with virtually no side
 “For example, the goal could be           effects. When Botox is injected
 to achieve the right amount of            into specific muscles, it promotes
 tension in the fingers of the             muscular relaxation, thereby
 affected hand to enable the patient       reducing spasticity and helping the
 to wash or cook, or it could be to        patient function more normally.
 make the affected arm or hand             To enable a patient to hold a
 move in a way that the patient            spoon, these injections may have
 can drive a manual car.”                  to be administered in varying
   The treatment of spasticity             amounts for different fingers.
 involves physical therapy and             The effects are reversible after
 medical management. The choice            about three months, allowing the
 of treatment depends on whether           spasticity balance to be modified to
 the goal is to combat focal or            the desired level. Botox injections
 generalized spasticity. Focal             are usually followed by intensive
 spasticity affects a smaller part         physical therapy, which involves
 of the body, such as a hand or            determining ‘anti-spastic’ body
 an extremity, whereas generalized         positions (in which the spastic
 spasticity affects larger areas of        muscles are stretched) and
 the body or the whole body.               doing stretching and range
   “Since the treatment is designed        of motion exercises.”
 to reach specific goals in terms            “For generalized spasticity,
 of a patient’s function, botulinum        we may use oral medications
 toxin A (Botox) injections are used       (dantrolene, baclofen, tizanidine
 Focal spasticity affects a smaller part
                                           or diazepam) or a baclofen
 of the body, such as a hand.              pump,” says Dr. Boulias. “Oral
                                           medications are effective but often
 Generalized spasticity affects greater
 areas of the body or the whole body.      cause side effects such as sedation
                                           and muscle weakness, especially on

14                                                             A CAREGIVER’S GUIDE
   the healthy
   side of the
   body. Liver
   dysfunction is
   also a concern.
   Often, we use
   a low dose
   of an oral
                         Dr. Boulias (left), Dr. Ismail (right) with patient Garth
   to reduce the                        Rutledge and his wife Mary
   overall level of
   generalized spasticity, and                  Talking to a doctor
   subsequently use Botox to reach
   specific goals.”                             If you suspect that your loved
      Another, although rarely used,            one has excessive spasticity, talk
   option for generalized spasticity            to his or her doctor and ask for
   is the baclofen pump — a round               a referral to a spasticity clinic.
   metal disc about one inch thick              Describe the symptoms you have
   and three inches in diameter —               observed and how they interfere
   that is surgically placed under              with daily activities. Try to be very
   the abdominal skin. The pump                 specific. Avoid general statements
   delivers the medication directly             such as “I would like my stroke
   to the spinal cord through a                 survivor to be able to move.”
   catheter (a small, flexible tube).           Instead, use specific observations
   Problems associated with the                 such as “his nails are digging into
   infusion pump include overdosage his palm” or “her elbow is twisted,
   and sudden withdrawal of                     and she has difficulty dressing
   baclofen. The decision to use                herself.” Describing specific
   this treatment depends on its                concerns will help your doctor
   availability and whether the                 understand the impact of spasticity
   benefits outweigh the side
   effects in a patient.                                        Continued on next page

TO S T R O K E R E C O V E R Y                                                       15
Help for spasticity                      Many effects of stroke
Continued from page 15                    can be rehabilitated.

 on your and the stroke survivor’s               Talk to your
 lives, and will enable your stroke     stroke survivor’s doctor.
 survivor to receive an appropriate
 assessment.                                You have the right

Message to caregivers                     to receive relief from
                                              the problem of
 “Spasticity is a common,
 debilitating condition that can                  spasticity.
 be effectively treated. However,
 to be treated, it must first be
 recognized,” says Dr. Ismail.          muscles can freeze permanently
 “After a stroke, patients face many    into abnormal, often painful,
 difficulties and may not be able       positions,” adds Dr. Boulias.
 to recognize the reasons for their     “Also, if a patient keeps walking
 restricted function. Patients may      on a foot that is turned in, it can
 also be told that their disabilities   damage the joint. If the hand
 cannot be treated because brain        cannot be opened to be washed,
 damage cannot be reversed.             a skin infection may develop,
 However, physicians who                requiring treatment with
 specialize in muscle analysis and      antibiotics.” Today, many effects
 movement can often find many           of stroke can be rehabilitated.
 solutions for day-to-day problems,     Take the initiative and talk to
 and can improve the quality of         your stroke survivor’s doctor. You
 life for both the patient and          have the right to ask for the best
 caregiver.” Treatment can also         services and treatments, and to
 help prevent further complications.    receive relief from the problem
 “If left untreated, the spastic        of spasticity.

16                                                          A CAREGIVER’S GUIDE
                           Occupational Therapy Highlights

                                                           therapists help
                                                           stroke survivors
                                                 improve their functional
                                                 status and find practical
                                                 solutions to everyday
                                                 living. This involves
                                                 designing new ways
            of carrying out activities important for stroke survivors’
            independence, lessening the burden for the caregivers.
            For example, occupational therapists can teach stroke
            survivors to get in and out of bed, dress, use the
            restroom, make meals and eat.
               Occupational therapists also help stroke survivors return
            to their leisure activities or take up new ones, relearn skills
            they might need to return to work, or overcome problems
            with memory and concentration.
               Similar to physical therapists, occupational therapists
            use an individualized approach and begin by assessing the
            physical, sensory, perceptual, cognitive, and psychosocial
            abilities of a stroke survivor. The therapist will then
            discuss treatment priorities with the stroke survivor and
            caregiver, and will design a program to achieve specific
            goals. This may involve exercises to build muscle strength
            and adaptations, such as handrails, bath seats, and mobility
            devices. When complex activities are too challenging, the
            occupational therapist may explain how to break them into
            parts and then how to link the parts.
              To find resources on occupational therapy or to locate
            an occupational therapist in your community, visit

TO S T R O K E R E C O V E R Y                                                17
     Overcoming depression
            ealing with the effects
                                             The symptoms of depression:
            of stroke is challenging
                                             • a sad mood
            enough for survivors,            • lethargy
 but also may adversely impact               • fatigue
 caregivers — often more than                • loss of interest in usual activities
 they are willing to admit. While            • feelings of hopelessness
 some feelings of frustration and            • self-loathing
                                             • difficulty concentrating
 unhappiness are normal, they                • social withdrawal
 should be distinguished from                • irritability
 depression, which is marked by              • decreased appetite
 insistent feelings of hopelessness          • sleep disturbances
 and despair. It is not uncommon             • suicidal thoughts
 for depression to affect both the
 survivor and caregiver, especially         reasons, it is extremely important
 as they begin to realize that stroke-      to recognize and treat depression.
 related disability is a reality. For the     In some depressed individuals,
 stroke survivor, depression may            a sad mood may not always be
 also be caused by biochemical              evident but other symptoms can
 changes in the brain.                      be suggestive of depression. It
   Motivation is key after a stroke,        may also be difficult to recognize
 with the caregiver and stroke              depression in some stroke
 survivor working as a team                 survivors, particularly if the stroke
 towards successful rehabilitation.         has caused dramatic changes in
 However, a depressed stroke                behaviour, function and the ability
 survivor will lose determination           to communicate. “Depression in
 needed to work towards                     stroke survivors could be directly
 rehabilitation, and a depressed            related to the damage to the brain,
 caregiver will be unable to function       or could be a reactive depression
 as an effective member of the              related to the various ‘losses’, such
 rehabilitation team. For these             as loss of function, independence,

18                                                                A CAREGIVER’S GUIDE
   relationships and/or ability to             isolated. Involve them in
   support the family,” says Dr. Saty          daily activities and routines.
   Sharma, physiatrist at Baycrest             Encourage them to be
   and Sunnybrook Health Sciences              independent while recognizing
   Centre in Toronto. “Also, some              their limitations.
   prescription and over-the-counter        • Maintain social contacts. Find a
   medications may cause depression            support group. A support group
   and related symptoms, and the               can help provide emotional
   possibility of drug-related adverse         support, as well as useful tips
   effects or drug interactions must           for managing disabilities.
   be ruled out.”                           • Exercise regularly. Aerobic
     Consult a physician if you or             and strengthening exercises are
   your stroke survivor has been               beneficial for stroke survivors.
   experiencing two or more                 • Seek relief from physical
   symptoms of depression for                  discomforts, such as pain, muscle
   more than two weeks. The earlier            spasms and constipation, that
   depression is recognized and                may contribute to depression.
   treated, the better will be the          • If possible, become a volunteer.
   outcome. The management                     Helping others will help you feel
   of depression may involve                   better about yourself.
   psychological counselling and
   antidepressant medications.                  Consult a physician
   Treatment will improve the mood
   and contribute to the stroke
                                               if you or your stroke
   survivor’s recovery.                          survivor has been
     Caregivers can help themselves
   and stroke survivors prevent or             experiencing two or
   manage depression. Some tips:
   • Set attainable rehabilitation goals.       more symptoms of
     If the goals are beyond reach,                depression for
     frustration will result.
   • Stroke survivors may feel                more than two weeks.
TO S T R O K E R E C O V E R Y                                                 19
     Intimate Relationships

             iven all the issues facing a   discuss the effects of stroke on
             stroke survivor, sexually-     their sexual relationships. For
             related matters may not        example, to compensate for loss
 seem important in the initial stages       of sensation, it may be necessary
 of recovery. However, as recovery          to experiment with new ways of
 progresses and survivors and               touching. One-sided weakness
 their spouses begin to have sexual         may call for being propped up
 feelings again, sexual activity            with a pillow. Spasticity in the legs
 can once again be an important             may require time for massage and
 source of pleasure, relaxation and         relaxation, and may be helped by
 intimacy. There is rarely a medical        treatment. Incontinence may be
 reason why a stroke survivor               overcome by emptying the bowels
 should not become sexually                 or the bladder before sexual
 active again, but barriers to sexual       activity. Remember that it will
 activity may include depression in         take time to rediscover what works
 either partner, spasticity, fatigue,       best for you as a couple. Create
 incontinence, muscle weakness              an environment in which both
 or a lack of balance. The stroke           of you feel comfortable. To
 survivor may be afraid of having           begin with, re-introduce familiar
 another stroke or may have                 activities, such as kissing, touching
 medication-related loss of libido,         and hugging. Use lots of caressing
 while the caregiver may lose sexual        and massage. Allow plenty of
 interest because of the spouse’s           time and keep an open mind!
 altered appearance and manner.               If intercourse is too difficult,
 A caregiver may also have difficulty       consider other forms of
 shifting from providing physical           lovemaking, such as touching,
 care to being a lover.                     hugging, massage, oral sex
    To successfully restart sexual          and self-touching. Couples may
 activity, stroke survivors and their       also want to consider sexual
 spouses must learn to openly               counselling.

20                                                               A CAREGIVER’S GUIDE
     Fight with all you’ve got

             ancouver residents John      an active
             and Carolyn Carter are       young
             a testimony to strength,     woman,
   teamwork — and the bonds of            she felt
   love. Seven years ago, at age 52,      as if she
   Carolyn suffered a debilitating        had been
   stroke. Engaged to be married at       catapulted John and Carolyn Carter
   the time, she had been vising her      into old
   family in England, preparing for       age. “The previous day, I was
   the wedding that was to take place     independent, capable and
   in her homeland. Caught up in the      attractive,” she recalls. “And then,
   planning, Carolyn ignored some of      I became immobilized, invisible
   the classic warning signs of stroke,   and incapable. I really wished I
   including weakness on one side of      could die, but my children loved
   the body, sudden dizziness, and        me and cared for me every day.
   severe headache with no known          What’s more, John insisted that
   cause. It was while she was on         we go ahead with the wedding!”
   the phone to John in Vancouver            “Initially, nobody could give us
   that she realized something was        any definitive answers about what
   seriously wrong: her left arm was      to expect in terms of recovery,”
   more than just weak, she couldn’t      says John, recalling the time.
   move it at all. Hanging up with        “Carolyn had suffered a massive
   John, Carolyn quickly called an        stroke and was paralyzed on her
   ambulance. She was rushed to a         left side. We had little choice but
   hospital, where John joined her the    to take one day at a time. Together,
   next day. He spent the following       we did everything possible to
   eight months by Carolyn’s side,        obtain rehabilitation services.
   unwavering in his determination        Carolyn’s determination to try
   that they work through this
   challenge together. For Carolyn,                   Continued on next page

TO S T R O K E R E C O V E R Y                                               21
Fight with all you’ve                  you’ve got to achieve them. “The
                                       Chronic Disease Self-Management
                                       Program taught me to set specific
Continued from page 21                 goals for my rehabilitation and to
                                       seek treatments to achieve them,”
 every treatment really helped. She    says Carolyn.
 made an amazing comeback in             Stroke recovery is a journey that
 her function and independence.”       can take years, but teamwork, a
    John and Carolyn resolved to       positive attitude and active pursuit
 learn everything they could about     of rehabilitation made all the
 stroke and spasticity. “One book      difference for John and Carolyn.
 was really helpful to us: ‘My Year    “To keep being positive while you
 Off’ by Robert McCrum,” says          are working towards your goals, it
 John. “It allowed us to look at the   helps to step back and enjoy the
 stroke as a phenomenon, to better     moment. Often, our daily lives
 understand what we felt, and it       are so rushed that we miss many
 encouraged us to believe that         simple pleasures. A stroke forces
 rehabilitation was possible.”         both the survivor and caregiver
    Two years later, Carolyn           to slow down — and surprisingly
 enrolled in a “Chronic Disease        we found it to be an amazing
 Self-Management Program” and          experience! You start noticing and
 learned how to set weekly goals       appreciating things that you had
 and work towards them. “The           simply missed before.”
 course was empowering,” shares
 Carolyn. “It encouraged me to          Carolyn Carter has founded a peer
 become a volunteer leader, which       support group “Vancouver Younger
 gave me confidence and a sense         Stroke Survivors.” The group meets
 of purpose. It is extremely            monthly for social networking,
 empowering to be helping others        hosts a website and publishes a
 who are in a similar situation.”       newsletter. For information, visit
    A key aspect of stroke recovery     www.peernetbc.com/groups/VYSS
 is to set goals and fight with all

22                                                         A CAREGIVER’S GUIDE
     Set sail for rehabilitation
           ach year, between 40,000
           and 50,000 Canadians
           have a stroke, and close to
  80% of these people survive and
  require rehabilitation. The goals
  of rehabilitation are to help                                        DR. SATKUNAM
                                                DR. SHARMA
  survivors reclaim as much of their
  lives and independence as possible.    Dr. Saty Sharma: Physiatrist, Spasticity Clinic,
  Although rehabilitation does not       ATC/Elkie Adler MS Clinic at Baycrest and
                                         Sunnybrook Health Sciences Centre, Toronto
  reverse the brain damage caused        Dr. Lalith Satkunam: Physiatrist, Spasticity
  by a stroke, it can help survivors     Clinic, The Glenrose Rehabilitation Hospital,
  achieve the best possible long-        Edmonton

  term outcomes.
                                         support of the caregiver, and
     “Every survivor, even if he
                                         appropriate management by a
  or she has had a stroke for the
                                         multidisciplinary team of medical
  second or third time, should
  be assessed for rehabilitation
                                           “Depression is not uncommon
  potential,” says Dr. Saty Sharma,
                                         in both stroke survivors and
  physiatrist and director, Spasticity
                                         caregivers, and can substantially
  Clinic, ATC/Elkie Adler MS
                                         reduce the effectiveness of
  Clinic at Baycrest and Sunnybrook
                                         rehabilitation efforts,” says Dr.
  Health Sciences Centre in Toronto.
                                         Sharma. “All survivors and
  Rehabilitation helps stroke
                                         caregivers should seek counselling
  survivors regain lost skills and
                                         to learn how to deal with life after
  adapt their lives to deal with any
                                         a stroke. If needed, treatment
  residual disabilities. According
                                         strategies can be used to help
  to experts, the most important
                                         manage the emotional challenges
  elements in any rehabilitation
  program are active participation
                                                          Continued on next page
  of the stroke survivor, dedicated

TO S T R O K E R E C O V E R Y                                                           23
Set sail for                            history, and the response to
rehabilitation                            The Baycrest Spasticity Clinic
Continued from page 23                  has a number of trained specialists.
                                        These include a physiatrist, two
 that may occur, including              nurses, a kinesiologist (movement
 depression.”                           therapist) and occupational
    There are many rehabilitation       therapists. “We start with a
 centers across Canada, offering        thorough assessment of the
 a range of services. Caregivers and    patient’s function, which is
 stroke survivors should have frank     restricted by spasticity, and
 discussions with their physicians      recommend a treatment strategy
 about the problems which they          which usually includes medical
 encounter on a daily basis. Stroke     management (e.g. Botox injections
 survivors can then be referred to      or oral medications), muscle
 the centers where their disabilities   stretching with the kinesiologist
 can be best managed.                   and educational sessions with a
    “At Baycrest Spasticity Clinic      nurse,” says Dr. Sharma. “We also
 we treat the excessive muscle          work with other clinics to obtain
 tightness, called spasticity, which    additional services when needed.
 often develops after a stroke,”        For example, a consultation with
 explains Dr. Sharma. “A referral       a neurologist is available if there is
 by a physician is required to get an   a concern about recurring strokes.
 appointment with us, but this may      Appointments can also be
 be initiated by a stroke survivor, a   arranged at the Brace Clinic
 caregiver, or a therapist who has      or on-site Seating Clinic.”
 identified a problem. A referral         In Edmonton, the Glenrose
 from the survivor’s family doctor      Rehabilitation Hospital is a state-
 is preferred because the family        of-the-art stroke rehabilitation
 doctor can provide important           center with both in-patient
 information about associated           and out-patient units. “At our
 medical problems, the treatment        rehabilitation centre, all patients

24                                                           A CAREGIVER’S GUIDE
   are assessed and treated by            we now have Botox injections
   physicians, nurses, physical           which are very effective in
   therapists, occupational therapists,   reducing the tightness in specific
   social workers and recreation          muscles. Caregivers need to
   therapists,” says Dr. Lalith           recognize the impact that spasticity
   Satkunam, a physiatrist at the         can have on day-to-day activities of
   centre. “As necessary, patients are    stroke patients. Treating spasticity
   referred to various departments,       can greatly improve the lives of
   such as psychology, speech and         both stroke survivors and their
   audiology, pharmacy, nutrition and     caregivers.”
   pastoral care. Teams of experts are      Caregivers should seek help if
   also available to help with feeding    spasticity interferes with day-to-day
   and swallowing, orthotics, assistive   functioning and caring for their
   devices, driving assessment, dental    stroke survivors. “Referrals to
   and sexual health. All patients and    physiatrists or neurologists dealing
   caregivers are encouraged to attend    with spasticity are warranted in
   the stroke education series.” In       such cases,” says Dr. Satkunam.
   addition, a Caregiver College is       “All stroke patients with spasticity
   available for caregivers and family    deserve an assessment to
   members who would like to learn        determine potential treatment
   how to meet the needs of their         options that can improve their
   stroke survivors.                      quality of life.”
     “Last year, we also
   opened a Spasticity
   Clinic. Spasticity is very
   common after a stroke,
   and today it can be
   treated much better
   than several years
   ago,” continues Dr.
   Satkunam. “In addition
   to oral medications,                     Dr. Satkunam with a patient

TO S T R O K E R E C O V E R Y                                                25
 A guide to Canada’s
       drug coverage
        iving with the effects of     website www.drugcoverage.ca
        stroke can impose a large     has a wealth of information on
        economic burden on stroke     Canadian drug coverage, provided
survivors and their families. Apart   by province and by program.
from the direct costs associated      Some frequently asked questions
with medical care, there are also     are featured below.
considerable indirect costs due
to loss of productivity. Reducing     How do I find out what drug
the financial burden of stroke is     insurance coverage is available
crucial to facilitating successful    to my stroke survivor?
rehabilitation. And, the more         Visit www.drugcoverage.ca,
independent a stroke survivor can     click on the “Guide To Drug
become, the less need there will      Coverage” button on the sidebar,
be for costly healthcare services.    and pick a province. The Guide
  Most Canadians get some             will help you identify what
reimbursements through private        plans/programs your loved one
insurance plans, provincial or        may be eligible for. You can also
territorial drug benefit programs,    visit a local pharmacy and ask
or federal programs for certain       the pharmacist.
groups. Some treatments may
be covered under Special              Can an individual be covered
Authorization, a process where a      by more than one benefit plan?
drug plan or drug benefit program     Yes. For example, a retired
makes a prescriber request            person may be covered by
coverage for a specific drug before   a provincial drug benefit as well as
approval can be granted. The          private pension benefit plan. An

26                                                        A CAREGIVER’S GUIDE
                                 individual   www.drugcoverage.ca for more
                                 may          suggestions.
                                 also be
                                 covered      What if the insurance company
                                 by both      does not cover the full cost?
                                 his/her      The out-of-pocket portion may
                                 own and      be applied to a second drug plan,
                                 spousal      such as a spousal drug plan or
                                 benefits.    a provincial/territorial drug
                                              program for which an individual
   What if the insurance company              may be eligible.
   does not cover a drug?
   Call the insurance provider to             How can Special Authorization
   make sure it is not covering the           be obtained?
   medication and ask for the                 To receive Special Authorization,
   reason. Let the employer’s Human           a letter from a physician has to be
   Resources Manager know that the            submitted, detailing the patient’s
   physician has recommended the              condition, with specific clinical
   medication and what the insurance          information, and indicating why
   company says. Have the manager             the treatment is necessary. In some
   contact the insurance company.             cases, specific criteria must be met
   If your employer has a drug plan           before approval is granted. When
   that does not cover the prescribed         discussing treatment options
   medication, they can consider              with your physician, ask what
   making an exception. Visit                 treatments might be covered
   the Rejected Claims button on              under Special Authorization.

         For information on reimbursement for prescription medications:
                                talk to your pharmacist,
                             visit www.drugcoverage.ca, or
              call Stroke Recovery Canada’s Warmline at 1-888-540-6666

TO S T R O K E R E C O V E R Y                                                    27
Services offered by
                                   Stroke Recovery
A program of March of Dimes Canada, a nationally registered charitable
organization providing support services to people with disabilities, their families and caregivers across Canada.

     Caregiver Support
                                               Caregivers must also care for
                                  Stroke is more likely to permanently alter
                                  the mind and body of a person and, with
                                  them, the life of an entire family, than
                                  any other single type of disability. Day-to-
                                  day family life may be changed forever.
     Stroke requires that caregivers must somehow set aside their own
     shock and fear to support the survivors, whose needs may seem to
     far outweigh their own. However, caregivers need to look after their
     own needs first. Otherwise, the quality of care that they are capable
     of giving, their relationship with the stroke survivor and their own
     quality of life can suffer greatly.

     Stroke Recovery Canada is a one stop resource for
     • emotional support and the opportunity to speak with other
       caregivers who are dealing with similar issues
     • practical help in enhancing caring and coping skills
     • increased awareness of available therapeutic and social service
     • education about the physical and psychological needs of stroke
     • information about stroke rehabilitation options

28                                                                                           A CAREGIVER’S GUIDE
               “I didn’t have a stroke, my entire family had a stroke,”
        said Lloyd MacDonald, a Stroke Recovery Member from Regina,
               Saskatchewan. “This national program helps to connect
           everyone affected by a stroke with the support they need.”

      Other Key Services

     Stroke survivors are not
     Stroke Recovery Canada can link you with
     peer support groups. These groups help
     survivors cope with what is often a long
     process of recovery and rehabilitation. A
     peer support group can be a tremendous
     source of strength, optimism and support for its members.

     Education and Information
     Stroke Recovery Canada provides free and easy access to information
     on medical treatments, rehabilitation options and support resources.
     In addition to distributing information to members, Stroke Recovery
     Canada offers additional services on its website and through seminars,
     conferences and its newsletter “The Phoenix.”

     Warmline 1-888-540-6666
     The Warmline is a confidential, peer support toll-free line for those
     affected by stroke. A non-medical and non-crisis resource, the
     Warmline offers information and support to stroke survivors, family
     members and caregivers. The volunteer at the other end of the line is
     typically a stroke survivor, a family member of a survivor, or another
     member of the community who is familiar with the stroke experience.

TO S T R O K E R E C O V E R Y                                                29
                     MEMBERSHIP FORM
                              Please print clearly

Yes, I would like to join
           Stroke Recovery Canada .                                            TM

 Please complete the following information.
 I am a:
      caregiver to a stroke survivor
      family/friend of a stroke survivor
      stroke survivor
      health care professional

                                                                                    PLEASE CUT ALONE THE DOTTED LINE

 For stroke survivors:

 Year of your stroke:                            Year of birth:



 City:                        Province:             Postal Code:

 Day telephone:                         Evening telephone:


 Including your e-mail address helps us save postage and mailing costs, providing
 us with more resources for this program. We comply with Canada’s Personal
 Information Protection and Electronic Documents Act.

                        Please return completed form to:
                         Stroke Recovery CanadaTM
                        c/o March of Dimes Canada
                              10 Overlea Blvd.
                           Toronto, ON M4H 1A4
                             Fax: 416-425-1920

                              Register online
When a stroke happens to someone
you love, it feels like your world is in
pieces. Even after a hospital stay and
rehabilitation, there are often many
questions and concerns. “How can I
help my stroke survivor reclaim his or
her life and be as active and independent as possible? How can I
manage to have a life while caring for my loved one after stroke?”

    Stroke Recovery Canada                                                       TM

                       is reconnecting lives
Stroke Recovery Canada is a national service offering post-recovery
support, education and programs for stroke survivors and their
families through its work with local peer support groups across
the country. Stroke Recovery Canada provides Canadians with
the resources needed to reconnect their lives.

                                       Contact Stroke Recovery Canada’s
                                       Warmline 1-888-540-6666
                                       Join a support group. Seek services and

                 You are not alone
A C A R E G I V E R ’ S G U I D E TO S T R O K E R E C O V E R Y                      31
Caregiver’s Bill of Rights
                     As a caregiver to a stroke survivor,
                     I have the right to:

                     1. Ask for the best treatment and
                     services for my stroke survivor and
                     be persistent in finding solutions to

                     2. Take pride in what my loved one and
                     I have accomplished and celebrate our

                     3. Take care of myself and maintain
                     parts of my own life that do not include
                     the person I care for.

                     4. Ask for help from others. I recognize
                     the limits of my endurance and strength.

                     5. Be angry, get depressed, and express
                     difficult feelings; seek help if these
                     feelings interfere with my life.

                     6. Receive acknowledgement, affection
                     or forgiveness from my stroke survivor
                     for my efforts.



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