Cancer resources for caregivers
Understanding Powers of Attorney
Caregiver SOS: Moving mom
May 2016 www.homeandlongtermcare.ca
The many faces of caregiving See page 22
Editor’s Note 610 Applewood Crescent, Suite 401 Vaughan Ontario L4K 0E3 905.532.2600 www.homeandlongtermcare.ca EDITOR
STEFAN DREESEN CREATIVE DIRECTOR
LAUREN REID-SACHS AS I SIT HERE penning my third Editor’s note I can hardly believe it – it seems like just yesterday our team was sitting in the boardroom talking about starting a new magazine. And here we are three issues in! There is something very exhilarating about participating in the development of a publication. I still get a kick out of seeing Home & Long Term Care Magazine in the rack at my local Metro and find it very gratifying to watch a caregiver pick it up and tuck it under their arm for future reading.
SENIOR GRAPHIC DESIGNER
JOHANNAH LORENZO GRAPHIC DESIGNERS
ANGEL EVANGELISTA, CAROLINE PAPINEAU NICK MCGRAW, JEFF CHARD ARUN PRASHAD, ALICESA PULLAN KATHLEEN WALKER, STEPHANIE GIAMMARCO BILLING AND RECEIVABLES
In this issue you will find information on cancer resources and support, Powers of Attorney, remote monitoring and digital health. As well as tips on making your home safe, vision care, and ensuring quality care when placing your loved one in a long-term care facility. This month’s cover story – The many faces of caregiving – highlights the diversity of caregivers. Caregivers are not just middle-aged people caring for aging parents. They are parents caring for children, spouses caring for partners, neighbours caring for eachother – even youth are caregivers. You are a varied and diverse group with some needs that are the same and others that are unique – which is why your feedback is so important. If your caregiving role presents you with unique challenges and you want information/resources that we haven’t provided, email me firstname.lastname@example.org We are here to help you on your caregiving journey, so please drop us a line.
MATTHEW PICCOTTI, PHIL GIAMMARCO
Home and Long Term Care is published for consumers who are supporting and/ or involved in home care or long term care. It is available free of charge from distribution racks in hospitals across Ontario. The statements, opinions and viewpoints made or expressed by the writers do not necessarily represent the opinions and views of Home and Long Term Care, or the publishers. Home and Long Term Care and Members of the Advisory Board assume no responsibility or liability for claims, statements, opinions or views, written or reported by its contributing writers, including product or service information that is advertised. Changes of address, notices, subscription orders and undeliverable address notifications, and inquiries can be sent to: email@example.com Subscription rates in Canada for single copies is $35.00 per year. Canadian Publications mail sales product agreement number 40065412.
Kristie Jones Editor, Home & Long Term Care firstname.lastname@example.org 2
Home & LongTerm CARE | May 2016
From the publishers of Hospital News, reporting on health care news and best practices for over 25 years.
contents May 2016
22 Caregiver criticism
Vision care in older adults
2 8 9 10 18 26 28 30
Cover story: The many faces of caregiving
Cancer info service
Pilates and rehab
Editorâ€™s Note Digital health Caregiver stress checklist Staying safe at home Cancer support Report on caregiver distress Ensuring quality long term care Caregiver SOS: Moving mom
Powers of Attorney
How to deal with
criticism as a caregiver
By Pamela Stoikopoulos
On a good day, being a caregiver to a loved one is already full of challenges: itâ€™s an all-consuming job that can take a mental and physical toll. So when others start to make suggestions or criticize your efforts, it can add even more stress. 4
Home & LongTerm CARE | May 2016
Most of the time, criticism has nothing to do with you or the job you’re doing, but instead is a reflection of the critic’s feelings.
IF YOU’RE THE PRIMARY CAREGIVER, and are fully immersed in caregiving duties, this can be frustrating – especially when you’re hearing criticism instead of gratitude for the care you’re providing. Take a deep breath and take note of the tips below to effectively deal with any criticism you receive as a caregiver. • Recognize it’s not about you. Most of the time, criticism has nothing to do with you or the job you’re doing, but instead is a reflection of the critic’s feelings. If you find yourself being criticized by the person you’re caring for, the root of their frustration is probably their situation. It’s upsetting to lose independence and one’s ability to do things. Although it’s not fair, the person may be taking out their frustration about their situation on you. If you’re experiencing criticism from other family members, their comments may come from a place of guilt for not taking more responsibility for their loved one’s care. • Try to look at the situation from a different perspective. When you’re involved it can be difficult to see the situation from another point of view. Don’t react too quickly, but instead take a moment to consider if there’s any truth in what others are saying, or if you’re overreacting to their comments. If you’re upset, you may be more sensitive to a situation and misinterpret a comment or conversation.
ask a family member for help so that you’re able to take a break from the situation. If you’re receiving abuse from other family members, then suggest that they leave until they can be more respectful. • Ask for advice. If you’re being criticized for something specific, ask the person criticizing you what they would suggest you should do to make the situation better. They might have a good idea that you haven’t thought of or they might realize that the issue they are criticizing isn’t something that can be fixed as easily as they thought. • Seek support. Information and support from other caregivers can help you gain some perspective on the situation and can give you some strategies to more effectively handle these difficult situations. Check out the Ontario Caregiver Coalition for links to several caregiver support organizations and resources. Visit www.familycaregiving.ca for more resources and insights on a range of caregiving issues. LC
• Stand up for yourself. If criticism ever becomes abusive or too much, don’t feel badly for standing up for yourself. Take a step back and, as calmly as you can, tell the person that it’s not okay to speak to you in such a manner. If it comes from the person you’re caring for, this may be a good time to Pamela Stoikopoulos is a Sr.Communications and Public Relations Manager at VHA Home HealthCare.
May 2016 | Home & LongTerm CARE 5
Cancer Information Service
A resource for
By Susan Fekete
THE WAY CANADIANS consume health information has evolved over the years. Twenty years ago, when the Canadian Cancer Society launched its Cancer Information Service inquires came via phone call. Nowadays, the service also fields emails and people access the Society’s website, cancer.ca which is jam-packed with anything you ever wanted to know about cancer. Today, nearly half of all Canadians have sought out information about cancer, with 85 per cent first turning to the internet. Two-thirds said their online searches left them feeling overwhelmed and stressed out. “Facing cancer is hard. People have many worries and questions during what may be the most stressful time in their lives or the lives of a loved
one,” says Laura Burnett, Director of the Canadian Cancer Society’s information and support programs. “It’s easy to become overwhelmed. Don’t face cancer alone. Instead, we urge people to contact our free Cancer Information Service.” No matter where you live in the country, the Cancer Information Service can help with your questions about more than 200 different types of cancer, treatment, diagnosis, care, services and much more. In addition, the service can connect patients and family caregivers to local community support programs and services if needed. Since 1996, the Canadian Cancer Society has answered more than 1.2 million questions. Flynn deHamilton of Oakville is one of these people. She called the Cancer Information Service after a close
Susan Fekete is communications professional with the Canadian Cancer Society in Ontario.
Home & LongTerm CARE | May 2016
friend’s mother was diagnosed with advanced lung cancer. “My friend really needed support and I personally didn’t know how to give her the support she needed. The Cancer Information Specialist answered all my questions and even referred me to some helpful services right in our community.” Jennifer Wiernikowski also knows the value of the service and has recommended it to many of her patients. Wiernikowski is a nurse practitioner at the Juravinski Cancer Centre in Hamilton and member of the Canadian Association of Nurses in Oncology. “I encourage all my patients and their families to call the Cancer Information Service,” says Wiernikowski. “This service is a trusted source of information and support. The staff take as much time as needed to make sure people get all of their questions answered, even the ones they didn’t even know they should ask.” To contact the Cancer Information Service, call 1 888939-3333 or visit cancer.ca. Help is available in more than 100 languages. LC
Top five cancer topics The top five cancer inquiry topics received at the Cancer Information Service: 1. Supportive care and services 2. Treatment 3. Cancer prevention, risks and screening 4. Diagnosis 5. Cancer symptoms While the Cancer Information Service can field questions on 200+ types of cancer, below are the most commonly asked about types of cancer 1. 2. 3. 4. 5.
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May 2016 | Home & LongTerm CARE 7
Digital health keeps me out of hospital
By Dan Strasbourg
DON FORTIN CREDITS DIGITAL HEALTH TOOLS with keeping him out of hospital and at home with his wife, Darlene. The Windsor man lives with Chronic Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD), conditions that require ongoing monitoring. Mr. Fortin is among thousands of Ontarians whose CHF and COPD is monitored from home as part of a community paramedicine remote patient monitoring pilot project led by Future Health Services, a not-for-profit organization that provides patients with telehome monitoring services. Participating patients receive in-home monitoring equipment, and paramedics keep tabs on their conditions so they can intervene as small issues arise, before they become serious complications that require hospitalization.
“I wake up in the morning, I take my pills and check my vitals, which are automatically sent to my care team from the comfort of my dining room table,” says Don. “This routine has kept me at home with my wife instead of in a hospital bed.” Rick Whittaker is Chief Executive Officer of Future Health Services Inc. He is leading the community paramedicine pilot project in collaboration with several counties across Ontario. “There are warning signs before many complications arise that patients might not notice until they require hospitalization,” says Mr. Whittaker. “Paramedics are trained to not only recognize those warning signs, but to intervene before they become more serious. By catching and dealing with these issues early, it can help avoid 911 calls and prevent hospitalization.” Before joining the pilot project, Don and Darlene lived with the possibility that Don would require hospitalization at any time. Since the digital health tools have been in use in their home, Don has not been admitted to hospital. Darlene says she appreciates having her husband at home with her, and the peace-of-mind that daily monitoring gives her.
Above: Don Fortin
“I find it reassuring to know medical experts are keeping an eye on him remotely. It’s one less thing for me to worry about and allows me to focus on other day-to-day activities I handle as Don’s caregiver,” she says.
Dan Strasbourg is Director, Media Relations at Canada Health Infoway.
Home & LongTerm CARE | May 2016
Caregiver stress checklist Michael Green, President and CEO of Canada Health Infoway, says the use of in-home digital health tools is just one example of how technology is improving the quality of life for patients, while taking some pressure off caregivers.
As Alzheimer’s disease progresses, a person’s abilities change. Eventually, full-time care will be needed. The person will require help with everyday activities, including bathing, dressing, eating and using the bathroom. Providing this daily support can be exhausting. When considering how best to meet the needs of the person with dementia, it is important to think about what’s best for the person while also evaluating the impact that caregiving is having on your own well-being.
“Digital health solutions are making it possible for patients to receive the care they need at home, where many would much rather be,” said Green. “This is good for the patient and good for the health care system.”
Experiencing some stress is part of everyday life. However, when symptoms of stress persist, they can be harmful. The following checklist from The Alzheimer Journey: At the Crossroads, may help you identify how stress is affecting your life. Answer the following questions: Never, Sometimes, Often
“One of the most important aspects of this program is the fact that this solution enables communication with all those involved in a patient’s care including family members, physicians, nurses and personal support workers,” added Whittaker. “The patient decides who they want to invite to be part of their virtual care team so everyone who needs to know how the patient is doing can be kept informed on a real-time basis.”
Loss of sleep
As for Don and Darlene, digital health has been a welcome addition to their home, one whose benefits extend beyond reduced emergency department visits and a better patient experience. “I fight every day to remain at home with my wife,” says Don. “You’re winning,” replies Darlene. The paramedicine pilot is operating in the counties of Renfrew, Grey, Essex, Cochrane, Parry Sound, Hastings and Wellington. For more information on how patients living with CHF or COPD can participate free of charge, call 1-866-997-9928. LC
• Are you experiencing difficulty getting to sleep? • Do you wake up in the middle of the night? • Do you have stressful dreams?
Personal health • Have you gained/lost weight recently without intending to? • Do you get ill more often than you used to? • Have you developed chronic health problems (e.g., backache, headaches, high blood pressure)?
Emotional health • Do minor upsets make you cry, angry or unusually irritated? • Are you having difficulty controlling your temper? • Do you feel pressure to hold things together? • Are you feeling hopeless about your current situation? • Have you given up hobbies or interests that you once enjoyed? • Are you spending less time with others? If you answered “sometimes” or “often” to many of the questions above, you may need to seek help to care for yourself. Even with the help of support services, providing care to a person with Alzheimer’s disease can be overwhelming. No matter how close you may be to the person, you may want to consider including others in the caregiving role. *checklist courtesy of The Alzheimer Society of Canada
May 2016 | Home & LongTerm CARE 9
to stay safe at home
By Gayle Seddon
WHILE LIVING AT HOME is the desire of many of us as we age, it can come with challenges. Fortunately, there are some simple things that can be done to reduce the possibility of injury, especially from falls.
glasses can make getting around more challenging (especially on stairs). We also have more difficulty seeing in dim light, so make sure you have adequate lighting in your home. This is one way of reducing the chances of a fall.
1. Medication Management
3. Non-Slip Flooring
Many seniors take many different medications each day, and it’s easy to make mistakes. Forgetting to take a dosage, or accidentally taking a double dosage can happen frequently and have severe consequences. Using weekly pill boxes can simplify the process. More elaborate versions even come with alarms that beep when it’s time to take a medication! It’s also possible to buy medications in blister packs from your pharmacist for an additional fee. A simple checklist may also work for many people. Don’t hesitate to ask your pharmacist if you have questions about your medication and how to take it. And please – throw out old medications. They can add to the confusion, and accidentally taking them in addition to your current prescribed medications can be dangerous.
Hardwood floors may look beautiful, but unfortunately they are a frequent cause of slips and falls, as are floors that are tiled or covered with throw rugs. Low-pile carpet or other non-slip flooring are better alternatives. And, of course, keep floors free of clutter – a definite hazard at any age.
2. Good Lighting As we age, our eyesight changes. Medical issues such as glaucoma and cataracts make it difficult to see as clearly as we once did, and even bifocal
4. Footwear You may be inside, but please don’t walk around in sock feet (and some slippers are well named). To provide good stability, you need a slip-resistant sole, low heels and a good fit. Wearing comfortable shoes indoors may be the best solution.
5. Assistive Devices Canes, walkers and wheelchairs can make it easier and safer to get around inside as well as outside your home. Medic-alert-type tools and wearable technology that can allow you to call for help may be a good choice for you if you alone and are concerned about falls. LC
Gayle Seddon is Director, Community Programs at Toronto Central Community Care Access Centre.
Home & LongTerm CARE | May 2016
ONE DAY YOU COULD NEED AN MRI
May 2016 | Home & LongTerm CARE 11
attorney Understanding the types By Melanie Ramos
THIS ARTICLE WILL DISCUSS the different types of power of attorney in Canada that caregivers should be aware of, and how knowing the difference can help caregivers look out for the interests, possessions, and welfare of the people they’re caring for. Before we continue, let’s define a couple of legal terms including: Grantor: The person (in this case, the person you’re taking care of) who appoints an attorney 12
Home & LongTerm CARE | May 2016
and grants them the power to make decisions on their behalf regarding their personal care or property. Attorney: The person whom the grantor has appointed to manage his or her affairs. Power of attorney: This is a legal document giving a person or corporation (the “attorney”) the right to make decisions on a grantor’s behalf. A general power of attorney lets the attorney manage the grantor’s assets during the grantor’s lifetime.
However, the general power of attorney is terminated upon the grantor’s loss of mental capacity or death. Will: This is a legal document that is prepared by a person during their lifetime to take effect upon their death to direct how their various assets and possessions will be dispersed or disposed. On average, Canadians are living longer so the potential of physical and/or mental incapacity is a reality of life we all must consider at some point. Recognizing this possibility, all Canadian provinces enacted legislation allowing attorneys to manage the grantor’s affairs even after their mental capacity has been diminished. This is called Continuing Power of Attorney (or Enduring Powers of Attorney), and is a separate legal document from the general power of attorney.
There are two kinds of Continuing Powers of Attorney: 1. Power of Attorney for Personal Care 2. Power of Attorney for Property
Power of Attorney for Personal Care This authorizes the attorney to make decisions regarding the personal care of the grantor. These decisions could relate to the grantor’s personal hygiene, nutrition, home, and clothing. A power of attorney for personal care only comes into effect once the grantor becomes incapacitated. This may sound like an advanced care plan, which is a great process to start while the person you’re taking care of can still tell you their wishes about the type of care they want to receive (or not receive) when they can no longer make the decisions on their own. Continued on page 14
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May 2016 | Home & LongTerm CARE 13
Continued from page 13 Unlike a power of attorney for personal care, an advanced care plan isn’t a legal document and is considered to be more than just a list of wishes for end-of-life care. Rather, it’s a series of conversations a person has with family members and other loved ones, friends, and their health care team to ensure that everyone is on the same page in terms of the person’s treatment plan.
Power of Attorney for Property The attorney is granted authority to make decisions of a financial nature for the grantor. Unlike a general power of attorney and power of attorney for personal care, the power of attorney for property can be enacted before the grantor is incapacitated, and continues after the grantor is cognitively diminished or impaired. A power of attorney for property can be: • General, giving the attorney wide powers to deal with all the grantor’s assets 14
Home & LongTerm CARE | May 2016
• Or limited in terms of time or purpose (For example, if the person you’re taking care of likes to spend their winters in warmer climates, he or she can appoint an attorney to manage their property while they’re away.) It may sound like the attorney has unlimited access and authority over the grantor’s personal care and property but there are limitations. When it comes to estate planning, the attorney is not allowed to create, make changes to, or revoke a will on behalf of the grantor. This restriction around the creating of wills also applies to making or changing the beneficiary on an RSP, a RIF, a pension plan, or an insurance policy. An attorney has a fiduciary duty towards the grantor. This means not allowing their own interests to conflict with those of the grantor. Therefore, the person in your care must appoint an attorney in whom they can trust implicitly to act in their best interest.
If appointing a member of the family will cause conflict with within the family, consider appointing a trust company to keep the peace.
Each Canadian province has different laws regarding executing multiple powers of attorney so be sure to know the legislation in your area.
If the person that you care for owns properties in different jurisdictions, make sure to find out whether a continuing power of attorney issued in one location is still valid in another.
For example, Ontario law stipulates that a continuing power of attorney is cancelled when the grantor executes a new one, unless the grantor specifies that they are executing multiple continuing powers of attorney.
For example, a retiree living in Ontario but also owns a vacation home in Florida, must ensure that Florida state laws are broad enough to recognize a power of attorney that was executed in Ontario, and whether or not financial institutions are willing to recognize this document.
Some financial institutions will ask you to execute their standard form power of attorney. The above consideration still applies when you sign a bank form power of attorney. You may be inadvertently revoking your existing general power of attorney, leaving you with the bank one, which only covers assets held by the bank and not your other assets.
If it turns out that the person in your care requires more than one power of attorney to deal with multiple properties, make sure that theyâ€™re not inadvertently cancelling out the first power of attorney when the second one is executed.
Each Canadian province has its own laws around executing powers of attorney so be sure to do further research or consult a lawyer specializing in trusts and estate planning. LC
Melanie Ramos writes for Saint Elizabethâ€™s blog elizz.com. Reprinted with permission.
May 2016 | Home & LongTerm CARE 15
in older adults
Problems with vision become more common as people age. For older adults, good vision is linked with quality of life and ability to enjoy social activities with friends and family. OLDER ADULTS with vision problems are also twice as likely to suffer falls that can lead to serious injury, such as broken hips, and even death. For individuals living in long-term care homes, visual problems have also been linked to decreases in cognitive function. To better understand the size of the vision care problem, the BruyĂ¨re Research Institute analyzed vision information that was collected by the Canadian Council of the Blind and the Lions Club 4A through a mobile eye clinic that visited 27 Ottawa based retirement and long-term care homes from 2013 to 2015. The average age of people who were examined was 78.2 years. A total of 602 people were examined and 53.5 per cent of them had at least one vision problem. Cataracts were the most frequent vision abnormality (33.1% of all examined), followed by age-related macular degeneration (9.1%) and glaucoma (5.1%).
The Ontario Ministry of Health and Long-Term Care covers vision assessments every year once individuals turn 65 and covers surgery (cataract extractions) and medical treatment for macular degeneration. 16
Home & LongTerm CARE | May 2016
Tips for seniors • Make sure to get your eyes examined annually by your optometrist. The research showed that over two-thirds (67.3%) of residents would have experienced important improvements in vision with eyeglasses (some of these also required surgery). Similar results have been observed in older adults living in nursing homes and assistive housing in the US. The Ontario Ministry of Health and Long-Term Care covers vision assessments every year once individuals turn 65 and covers surgery (cataract extractions) and medical treatment for macular degeneration. However, they do not support the cost of eyeglasses. Although vision care is so important and is funded, only 40 per cent of seniors have annual eye examinations (2011).
• For information about mobile clinics and other services, please contact the Canadian Council of the Blind (www. ccbnational.net, 1-877-304-0968).
For many older adults who live in retirement or long-term care homes, accessing vision care services at an optometrist’s office is very challenging. Challenges include organizing transportation and finding someone to accompany them. In addition, this type of travel can be very disruptive for people with complex medical problems, such as dementia. LC
This article courtesy of Bruyère Research Institute.
May 2016 | Home & LongTerm CARE 17
support for both the patient and caregiver By Jessica Picton
WHEN SOMEONE is diagnosed with cancer it not only affects the individual but also their loved ones around them. At Wellspring Cancer Support Foundation we understand the overwhelming feelings of fear, anxiety, pain, financial stress, isolation and guilt that come with a cancer diagnosis. Through one-to-one peer support, group support activities, learned coping skills, restorative
programs and much more, Wellspring has helped thousands of people take an active role in controlling their cancer experience to improve their quality of life. At Wellspring, the focus is on the person, not the disease. It is a warm, safe community that welcomes anyone living with cancer, at any stage of their cancer journey, as well as, those who care for them. All 40+ programs offered at Wellspring are evidence-
Jessica Picton is a Communications Specialist at Wellspring Cancer Support Network.
Home & LongTerm CARE | May 2016
LEFT: Patients and caregivers attend the Wellspring nourish program for information on cancer and nutrition.
based, professionally-led and offered free of charge. Wellspring understands not only the individual needs of the person living with cancer but also the specific needs of the caregiver. Wellspring offers a variety of programs that allow the person living with cancer and their caregiver to attend separately or together. For example, the Healing Journey, Drumming and Nourish programs. The Healing Journey Program is a multi-leveled program that provides emotional support, coping strategies and opportunities for people to share fears, worries and stresses they may be experiencing throughout their cancer journey. From level to level each person will continue to grow and build on the foundation of strategies and skills as they progress through their healing journey. Drumming is an expressive arts technique that uses percussion and rhythm exercises to express emotions, manage stress and improve a sense of emotional and physical well-being. This group provides a community for cancer patients and caregivers to meet with one another and share in a creative musical experience. The Wellspring Nourish program provides a variety of sessions on cancer and nutrition using the latest research to teach the fundamentals of good nutritional practices. Many Nourish programs include cooking demonstrations, food sampling and take home recipes. Becoming a Wellspring member is easy. Simply drop into one of the four Wellspring GTA centres or fill out an online membership form at www.wellspring. ca. When you visit Wellspring for the first time you will meet with a Peer Support Volunteer, someone who is a cancer survivor or has been a caregiver to someone with cancer. Peer Support Volunteers are
When someone is diagnosed with cancer it not only affects the individual but also their loved ones around them. specifically trained to provide emotional and coping support to people living with cancer and their caregivers. Meeting with a Peer Support Volunteer provides an opportunity for members to share their story, express concerns and learn about Wellspring in private. It also provides a time to help members select programming that is appropriate for their current needs, interests and time. Wellspring has four centres across the GTA including Wellspring Downtown Toronto (4 Charles Street. East., 4th floor), Westerkirk House at Sunnybrook (105 Wellness Way), Birmingham Gilgan House in Oakville (2545 Sixth Line) and Wellspring Chinguacousy in Brampton (5 Inspiration Way). Please visit www.wellspring.ca for more information. LC
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May 2016 | Home & LongTerm CARE 19
back Help loved ones get
feet faster By Barbara Grant
IF YOU HAVE A FAMILY MEMBER, friend or loved one who needs to get back on their feet after physical therapy or rehabilitation, Pilates can be helpful. We all know that exercise is important to rebuild mobility, strength, balance and confidence after injury or surgery. But many people find it difficult to exercise after an injury or surgery – even after completing physical therapy. No matter how motivated you are, the road from the disability you feel now to the strength and the ability you want to feel in future can be daunting. The gap between physical therapy and traditional exercise programs can appear to be too big. Pilates fills that gap. It is the missing link that can ensure better long-term success after rehabilitation. A Pilates exercise program will decrease the risk of reinjury and help you support your loved one in managing chronic conditions while at the same time increasing their overall fitness, wellness and independence.
muscle recruitment and joint stability in the lower limbs, upper back, shoulders and neck. We know many individuals do not continue to exercise after completing physical therapy and do not return to pre-injury activity levels. Why? Maybe they never exercised in the first place. It’s not part of their lifestyle. Maybe they are so used to being in pain that the idea of physical exertion terrifies them. They may have been previously highly-active and fit but are now discouraged by how decreased their fitness level has become and how prone they are to re-injury when they try to return to previous activity levels. Many muscular-skeletal injuries arise from poor joint mechanics. Repairing the meniscus in the knee will deliver relief. But pain will persist and function will not improve if the muscle recruitment at the knee is compromised by faulty joint mechanics at the hip. The same can be said for any joint up and down the skeleton.
What does Pilates do that many traditional exercise programs don’t? Most people know that Pilates builds core strength, but what a lot of people don’t know is that there is way more to Pilates and to core strength than strong abs.
The underlying purpose of Pilates is to enhance physical function; to get the body working efficiently and without extra effort, energy or tension. It’s like fine-tuning the engine of a car. That is why Pilates works equally well for high-performance athletes as it does for post-rehab.
Pilates builds strength and balanced muscle development from the inside out, starting with the deep inner unit of core muscles. It creates stability in the lumbar spine and pelvis. This base of core strength enhances postural alignment allowing for improved
As the population ages, maintaining a good degree of physical fitness is paramount to avoiding, managing and mitigating the chronic conditions that arise from aging. For those whose activity level has been compromised by injury or surgery, the reverse is true.
Barbara Grant is the founder and president of Retrofit Pilates, a full-service fitness and wellness studio located in Toronto.
Home & LongTerm CARE | May 2016
A broken hip is the leading cause of entrance to a nursing home. Not because the broken hip is so bad, but because the resultant ramifications of the loss of ability and mobility set off a spiral of ill effects. The less active a person is, the less fit they become. The less fit they are the less capable they are in maintaining health and independence. Itâ€™s a downward spiral. Pilates can start to reverse that spiral for anybody. Less pain plus more ability leads to more confidence and activity. Improved strength and fitness leads to
healthier choices and more independence leading to better mental and physical health. The downward spiral of injury is reversed. Of course all Pilates programs are not the same. In supporting your friend, loved one or family member on the journey back to optimal health, make sure you seek out Pilates practitioners who have the requisite comprehensive training and experience to apply post-rehab protocols and to create programs specific to your loved oneâ€™s needs. LC May 2016 | Home & LongTerm CARE 21
The many faces of
caregiving By Lisa Levin
ONE IN FOUR CANADIANS – or 8.1 million people are family caregivers. When asked to describe a typical family caregiver many envision a middle aged woman – a caregiver who supports her aging mother or father by cooking meals, driving them to appointments, and doing their shopping. While this may describe many caregivers – it does not do justice to the diversity of caregivers in Ontario. There is simply no “typical” Canadian caregiver. Caregivers come in endless varieties. They include adult children caring for their parents, spouses of all ages caring for their husbands or wives, parents caring for ill children, and friends or neighbors caring for one another. Sometimes people care for multiple individuals. Caregiving has no age limits – from those in their nineties to children and youth. You may be surprised to know that 12 per cent of youth in Canada are in a caregiving role. To make matters more complicated, caregivers support people with a wide range of conditions and illnesses. These include chronic illnesses, such as heart disease or diabetes; episodic illnesses such as HIV/AIDS; mental or physical disabilities; and mental health and/or addiction issues. Contrary to popular belief, caregivers are almost evenly split between the genders – 54 per cent are women and 46 per cent are men. However, the caregiving roles often vary between genders. Woman are twice as likely as men to provide personal care, including bathing and dressing, and assist with medical treatments and housework. Men are more likely to do home maintenance and outdoor work. Lisa Levin is the Chair, Ontario Caregiver Coalition.
Home & LongTerm CARE | May 2016
Contrary to popular belief, caregivers are almost evenly split between the genders â€“ 54 per cent are women and 46 per cent are men.
The amount of time devoted to caregiving varies tremendously. Many caregivers spent an average of three hours a week in their role, however those assisting a child often provided support for at least 10 hours a week, while those caring for an ill spouse often spent 14+ hours a week. This figure increases dramatically as the level of illness and complexity of the person requiring support rises. In particular, caregivers of those with advanced dementia, at endof-life, or medically complex children can find their role continuing around the clock.
Caregivers are encouraged to seek ongoing support for their role â€“ become familiar with community resources and ask for help. It may take a village to raise a child, but it also takes a village to support Canadaâ€™s growing and diverse caregivers. LC
Caring for a family member or friend can be a short term or ongoing role. Most caregivers (89 per cent) have been in their role at least one year, with half caring for a loved one for four years or more. Longerterm caregivers were more likely caring for an aging friend or family member, while short-term caregivers were most commonly providing help to a person with cancer. Despite these varying differences, there is one major attribute that many caregivers have in common over 70 per cent of caregivers work. Caregiving has a major impact on work routines. Approximately 40 per cent of employed caregivers arrive to work late, leave early, or take time off during the day to care for their ill family member or friend. Caregiving is no doubt a delicate balancing act. When the equilibrium is lost, caregiver burnout can set in.
May 2016 | Home & LongTerm CARE 23
Bringing remote monitoring to the next level
By Kathy Schreiber
THE BENEFITS of remote patient monitoring have always been clear to the healthcare community. Not only does it reduce the number of trips patients have to make to a clinic, it can also help caregivers to detect a problem before the patient requires a visit to an emergency room or admission at a hospital. Early intervention can also mean better health outcomes â€“ not to mention improved quality of life for patients, by being able to manage more routine health needs from home. Remote monitoring has become infinitely easier in our digitally connected world. Todayâ€™s smartphones and tablets can be used for everything from sending text messages and listening to music, to monitoring your vital signs and sending reminders. More importantly, they are becoming an integral part of healthcare delivery. In fact there are over 100,000
healthcare apps being used by patients, caregivers and clinicians today. This is not surprising given that statistics from comScore show that more than 62% of Canadian phone owners 55 years and older owned a smartphone. In addition, over 1.5 million Canadians used mobile devices exclusively to access the internet. As technology evolves and becomes easier to deploy, using an app on a mobile device is broadening its appeal from younger generation users to patients of any age, from children to seniors.
Remotely monitoring pacemakers Pacemakers have presented an interesting evolution of remote monitoring practices over the years. In fact pacemakers, which were introduced in the
Kathy Schreiber is the Marketing Manager of Cardiac Diagnostics and Monitoring at Medtronic Canada. A former Registered Nurse, Kathy is passionate about healthcare technologies that allow patients and healthcare providers to receive and deliver care virtually, improving access to clinical expertise irrespective of where one lives.
Home & LongTerm CARE | May 2016
1950s, were the first implanted medical devices to allow people to transmit their data over telephone lines – a huge plus in enabling patients to send information without having to visit a clinic for routine checks. By today’s standards, early monitoring systems for implanted devices were cumbersome and the information they gathered was basic (mainly battery status). About 10 years ago, second generation pacemaker devices were able to report more data, including battery status, historical data, and diagnostic information. Even with that advancement, the process required a dedicated instrument that needed to be connected to a standard analog telephone line. A wand would have to be passed over the pacemaker device to take and transmit readings. Given pacemaker patients are generally older, the process was often overly complicated.. Another limitation was that these systems could only be used within continental North America, which restricted travel options for many. Patients also had to use a specific telephone service provider.
monitoring timelines are met. They can also share this information with a family member.
Pacemaker inventor uses app A perfect example of how convenient and efficient this app can be is Earl Bakken who is 92. He lives in Hawaii and uses his smartphone to send his pacemaker transmissions from the comfort of his home. Bakken is a familiar name in healthcare technology circles. He was the person who developed the first external, battery-operated wearable artificial pacemaker in 1957 and is the founder of Medtronic, one of the largest medical technology companies in the world. It seems fitting that he can now benefit from the technology he helped create. As the population of patients requiring remote monitoring grows, technology needs to keep pace with easy-to-use, reliable solutions. The rapid growth in app-based solutions – and increasing acceptance on the part of patients of all ages - offers a promising future for remote monitoring. LC
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World’s first mobile app for pacemaker monitoring With smartphones and tablets and the near-universal access to Wi-Fi or cellular services, all this has changed. One of the latest developments is the world’s first app-based remote monitoring system for pacemakers, called MyCareLink Smart™, introduced in January of this year in Canada by Medtronic. This new app lets patients with select pacemakers use a smartphone to transmit their pacemaker data to their clinic. It’s a much easier option than having to work with dedicated technology from the pacemaker company. Not only is the technology familiar to most patients as well as family members, it means monitoring and reporting can be conducted from almost anywhere in the world where there is access to an internet connection. Patients on the move can also transmit the information to a care provider so they can ensure
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Who cares for the
caregiver? Report indicates caregiver distress is growing
By Dr. Joshua Tepper
A RECENT LATE-NIGHT Emergency Department shift was like many others. I saw patients of all ages and a broad range of medical issues. As I reflect back, two patients stood out. Both were elderly men with serious complex chronic conditions. But one was fortunate enough to be accompanied by family members, whereas the other arrived by ambulance alone. In the first case, the manâ€™s wife and daughter helped communicate his health issues because he didnâ€™t speak English. They brought his recent medical records and were a comforting presence over a period of several hours. Their participation in his care helped make it possible for me to send him home in accordance with his wishes. Without similar help, the other man spent several hours alone as we tried to piece together what was happening; he was admitted to the hospital though he had hoped to go home. It struck me how much difference can be made by the presence of family and friends. Yet these critical caregivers are rarely acknowledged when we talk about the health system. Chances are most of us have acted as informal, unpaid caregivers at some point for a parent, child or spouse. When we serve in this role, we provide critical support to our loved ones and the health system at large. However, this support often comes at
a personal cost, especially when caregiving stretches into months or even years. During that late-night shift, the manâ€™s daughter spoke urgently about wanting to stay with her father, but also needing to return home to her kids and be ready for other commitments the next morning. Visibly distressed, she was torn between duties to different parts of her life. Health Quality Ontario has released a new report to better understand distress like this, among unpaid caregivers of long-stay home care patients in Ontario. We found rates of stress, anger and depression have more than doubled for these caregivers, climbing from 15.6 per cent to 33.3 per cent between 2009/10 and 2013/14. Within that time frame, long-stay home care patients cared for by family members or friends have also become collectively more cognitively impaired, more functionally disabled and sicker. In Ontario, at least one informal caregiver, such as a spouse or adult child, shoulders the everyday care of almost all long-stay home care patients (97 per cent) who also receive publicly funded home care. Most assume the role with little to no formal training, stepping in to fill the hours not covered by a paid support worker. For many informal caregivers, time-intensive caregiving can lead to sleepless nights, emotional
Dr. Joshua Tepper is a family physician and the President and Chief Executive Officer of Health Quality Ontario.
Home & LongTerm CARE | May 2016
exhaustion and feelings of guilt or loneliness that may negatively impact their lives. Some studies associate long-term caregiving with physical problems, such as back aches, migraines, stomach ulcers, hormonal changes and even early death. Our report also shares stories from families across Ontario. Nghi is a former trading supervisor for a stock brokerage, who must decide between returning to work and selling his home in order to pay bills related to informal caregiving for his mother. Carole Ann stood by her husband Bill throughout his fiveyear ordeal of nine ankle surgeries, many infections and congestive heart failure. “Bill’s wounds have healed,” she says. “But I don’t think I have.” Watching someone we care about suffer from prolonged illness or declining health is always difficult, so it’s not possible to completely eliminate distress. However caregivers should not have to endure avoidable stress. Caregivers are an integral part of our health system. It’s critical that we support them in times when they support others. LC
May 2016 | Home & LongTerm CARE 27
long-term care By Esther Goldstein
RELOCATING YOUR LOVED ONE to a long-term care home is a difficult, stressful and emotional process. Finding a home that can provide quality care while meeting any necessary social, emotional and practical needs, takes time and tremendous effort. Helping the person adjust to their new home and ensuring that the care they receive is good, are priorities once the move has happened. As a first step, you should ensure that there is a primary person who can be your contact in the home if a problem arises. If there are concerns at any time, discuss them promptly with facility staff. Be available as much as possible during the settling in phase. Keep in mind that change is scary for all parties involved and there will be an adjustment period. Don’t be afraid to give feedback to staff – but don’t get caught in only telling them when things
are wrong. Don’t forget to give praise when it is due and let them know that you appreciate all that they do for your loved one. Take the time to speak to staff when you visit. Find out how the person is adjusting and help the staff get to know their new resident. Share important things about them that will help in the adjustment process; what are their likes and dislikes, hobbies etc. If there are issues of cognitive impairment pass along some coping strategies that work for you. As there are likely several shifts of staff that need to get to know the person, you may want to post some information on the wall/room bulletin board or on a side table that will help them work with your loved one. During your visits you may want to observe interactions between staff and residents to ascertain if residents are treated in a respectful way and if needs are met with care and kindness. Don’t forget to seek
Esther Goldstein, B.Sc., B.S.W., RSW is a former acute care hospital social worker and the author of the Comprehensive Guide to Retirement Living®. She also administers the affiliated national website www.senioropolis.com.
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The most important factor in determining quality of care in any care setting is the staff
feedback from your loved one about how things are going. In the early days it might be a bit difficult to determine if complaints are related to adjustment or actual problems with the operation of the home. That being said, it’s important not to discount any concerns that are related to care and comfort. You may need to be present to observe the situations in question or gently approach staff to discuss issues in a non-threatening way. The most important factor in determining quality of care in any care setting is the staff. You can determine this easily if you take the time to watch and listen during your visits. Get to know other residents and their families/regular visitors. Developing relationships with both staff and residents will ensure that if there are issues, you are notified of them. Focus on the food quality, cleanliness and staff attitude. Join a Family Council if
there is one. If you have the time, participate in activities in the residence. This is a way to help your loved one adjust while creating opportunities for you to get to know people who live and work there. Request regular meetings to review any issues – attend all meetings that are arranged and if possible ensure your loved one participates in these meetings if they are able. For caregivers who struggle with having to relocate someone to long-term care, it is important to keep in mind that you are still a caregiver even if you are not doing the same tasks you were doing in the past. The way that you ‘give care’ has changed but your new role is equally important and tremendously necessary. Let your loved one know that you are always available for them and will do your best to ensure that they receive the best care possible in their new home. LC
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How to take bumps from momâ€™s care-home switch My mother has been in a long-term care facility for a year and is in relatively good health. We would like to move her to a facility closer to our family. How much of a disruption is this? She doesnâ€™t know us as her children but enjoys our visits. To move or not?
The decision of choosing a long-term care facility is a tough one and having chosen one that has worked out is a great success already. I understand 30
Home & LongTerm CARE | May 2016
your dilemma! There is nothing like a caring, involved family member to iron out bumps and help as oneâ€™s care needs change. Of course, firstly, you need to ensure when moving mom that the new care facility has the ability to care for her in Nira Rittenberg the way that you would expect and to ensure that they can manage well in the later phases of the disease that she has entered. Not all facilities are created equal and stylistic and management styles influence how places run. Moving some-
one and feeling they are not well cared for is heart wrenching, so ensure that you are comfortable with the choice. Having done that, proximity to family and friends is key. Your ability to come by, oversee care, offer comfort and support to her and liaise with staff is invaluable. One question I would ask is how aware she is of her surroundings. She is likely comfortable and familiar, but often as the disease progresses mom may not know people individually, but may be responding to their kindness and the structure of the home. If so, she can do so at a new place. I would make an appointment with the social worker or the director of care in the facility and see if you have a good feeling about the place and how they will approach getting to know her. If you do proceed, I would say that your mother would likely have a bit of a “bump” in the transition to a new place as familiar cues will be absent, but she will
adapt to the kindness and support of the new people if present. Placing familiar items in her room and making more visits, initially, can help the transition. Some families hire a couple of extra hours of care to help the staff get to know the person. (This is not required and can be done by family, too). Assess what your mom is able to do for herself and what she engages in and ensure that the new place has the same offerings recreationally and stimulation wise and keep her doing these things. If you invest in educating the staff about what her needs are at present and she responds to your visits well, you should have success. Don’t expect it overnight though and prepare for a period of stress upon arrival. It is unpredictable and may go better or worse than anticipated. You clearly want to be there for her and she is lucky to have you in her life. LC
Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Centre and in private practice. She is co-author of Dementia A Caregiver’s Guide available at www.baycrest.org/dacg Email questions to firstname.lastname@example.org
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May Edition Cover Story: The many faces of caregiving