Dealing with loneliness
Workshops for caregivers
May 2017 www.homeandlongtermcare.ca
The family caregiver dilemma See page 8
loneliness By Susan C. Jenkins
GRETA GARBO has often been quoted as saying, “I want to be alone.” But loneliness is a significant problem for a growing number of middle-aged and older people, even for those who say they like being alone. STUDIES HAVE FOUND that loneliness increases the risk of premature death by 30 per cent and raises the chances of developing dementia by 64 per cent. Loneliness has been associated with high blood pressure, chronic lung disease, arthritis, and impaired mobility. In fact, a lack of social relationships can be as detrimental to a person’s health as smoking 15 cigarettes a day, being obese, and being physically inactive. On the other hand, meaningful relationships and feeling connected strengthen the immune system, which helps the body fight off infections. In recent years scientists have begun to study loneliness as a medical rather than a sociological problem. A team of neuroscientists at the Massachusetts Institute of Technology have even identified the area of the brain where they believe feelings of loneliness are generated. John T. Cacioppo, a professor of psychology at the University of Chicago, found that
loneliness is a signal from the brain that is as real as feelings of hunger, thirst, and pain, and that trying to make loneliness go away by denying we feel lonely makes no more sense than trying to make hunger go away by denying that we are hungry.
Finding solutions If you find yourself feeling lonely – or if you are a caregiver for someone experiencing loneliness – there are some steps you can take. In fact, you can start by taking a few steps. Physical activity is a wonderful antidote to loneliness. Caregivers can introduce light physical activities such as walking and stretching. And physical activity groups (such as mall walkers) are great for both physical health and socializing. Those who can’t participate in physical activities can take a class or join a hobby group and interact with people who have similar interests. Continued on page 5
Susan C. Jenkins is a freelance writer and editor specializing in medicine, pharmacy, and healthcare. She can be reached at email@example.com.
Home & LongTerm CARE | May 2017
8 Workshops for caregivers
Heart of Home Care Awards
2 4 18
Cover story: Time: The family caregiver dilemma
Alzheimer Society of Canada
Dealing with loneliness ess Editorâ€™s note Keep moving
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 TIME. Many of us often wish we had more of it – just two extra hours every day to get everything done. For family caregivers there are just not enough hours in the day to maintain their own home, job, life and provide care for a loved one. What often ends up happening is the caregivers fails to take time for themselves and become exhausted or burnt out. This month’s cover story addresses time and the dilemma it often presents to caregivers. This month’s issue also provides information on how to deal with loneliness in your loved one. Loneliness can present a real problem for many seniors (especially if they have been relocated or have lost a spouse), and it needs to be addressed. My grandfather’s rapid deterioration following the passing of my grandmother was in large part due to loneliness. He lived in a small town and we could only visit on weekends so he became very lonely. Eventually we moved him in with my dad and he showed great improvement. Caregiving is challenging and while rewarding, it can often leave you feeling drained and even resentful. With that resentment comes guilt for feeling that way. This issue also deals with how to curb caregiver guilt and provide care for yourself. I hope you enjoy this issue and send ideas for articles to firstname.lastname@example.org
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JOHANNAH LORENZO GRAPHIC DESIGNERS
ANGEL EVANGELISTA, ALICESA PULLAN, KATHLEEN WALKER, STEPHANIE GIAMMARCO, ZHENG ALICE WU BILLING AND RECEIVABLES
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.
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Home & LongTerm CARE | May 2017
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Dealing with loneliness Continued from page 2 Another option for some people is to volunteer with an organization that allows them to share their experience, knowledge, and skills with others in their community. For some people, having an animal companion can bring comfort and ease loneliness, but animals require care, so this isn’t a good option for everyone. Making an effort to connect with friends over lunch or a cup of coffee or tea can be an important part of social contact. If you are a caregiver, simply sitting comfortably with the person you are caring for and reminiscing about the past, sharing stories, and remembering happy times can ease loneliness. And don’t forget technology. Email and sites such as Facebook and Twitter allow people to stay connected with friends and family. Not a techie? No problem! A service called ShareMail (www.sharemail.me)
connects seniors with the digital generation. If their younger relatives are on Facebook or Instagram, ShareMail can pull selected pictures and updates, print them, and automatically mail them to offline loved ones once a week. The younger generation doesn’t need to make any special effort, and older relatives feel remembered and connected. As Sarah, a ShareMail user, put it: “Before ShareMail, I had minimal contact with my 90-year-old grandmother. I can’t thank ShareMail enough for the amazing opportunity to reconnect with her from the convenience of my phone.” Her grandmother added: “I love ShareMail from Sarah. I save all the letters and am going to make an album of the photos and the notes that come with them.” And getting back to Greta Garbo, what she actually said was, “I want to be left alone.” Big difference! Bye-bye, blues. Hello, health. LC
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Self-Management Program offers workshops for caregivers By Rachel Long
ACROSS ONTARIO, caregivers, who are usually family members, significant others or friends, are providing ongoing care and assistance to those in need of support due to physical, cognitive, mental health or addiction conditions. It can be a challenging role as caregivers can face personal stress, negative feelings and communication roadblocks. The need to be a caregiver can happen unexpectedly or build over time as the caregiver becomes suddenly or slowly responsible for a loved one’s day-to-day housework, meal preparation, navigating healthcare appointments or ensuring the necessary supports are scheduled in the home while trying to maintain their own commitments to their employer, their dependents or themselves.
To support caregivers in the Central East Local Health Integration Network (Central East LHIN) sub-regions, the Central East LHIN Self-Management Program is now offering free Powerful Tools for Caregivers workshops. The Powerful Tools for Caregivers workshops consist of six weekly classes that help caregivers develop a wealth of self-care tools to: • Reduce personal stress, change negative self-talk, communicate their needs to family members and healthcare or service providers, and communicate effectively in challenging situations; and • Recognize the messages in their emotions, deal with difficult feelings, and make tough caregiving decisions.
Resources For more information on the Central East LHIN Self-Management Program or to register for an upcoming Powerful Tools for Caregivers workshop, please visit www.ceselfmanagement.ca, e-mail email@example.com or call 1-866-971-5545.
Home & LongTerm CARE | May 2017
Since the launch of the Powerful Tools for Caregivers workshop series, 130 caregivers have participated in the free six-week workshops. The need to support caregivers in their important role is being met by ongoing delivery of the Powerful Tools for Caregivers workshops with another nine free workshop sessions being offered through to September 2017. “As a result of these workshop sessions, I feel I am a more understanding and calmer caregiver. The tools I have learned make my days less stressful for both my husband and I. As a result, our daily lives go smoother in most situations,” explains Sylvia McNabb, a graduate of the Powerful Tools for Caregivers workshop series. “These skills that we have been taught are also very useful in situations other than caregiving. I am also very thankful to have been given the very useful Caregiver Help Book as well. It will be an excellent reference for me after the series is finished.” The launch of the Powerful Tools for Caregivers workshops in the Central East LHIN was supported by the recent graduation of the Powerful Tools for
Caregivers Master Trainers – four staff and volunteers from the Central East LHIN Self-Management Program – and their facilitation of the first ever Powerful Tools for Caregivers Class Leader training events in Canada. This means an additional 26 class leaders are helping to support caregivers across all seven of the Central East LHIN’s seven sub-regions. “We are pleased to have the graduates from the first ever Powerful Tools for Caregivers Class Leaders training in Canada leading these workshops to support caregivers in the Central East LHIN. The free Powerful Tools for Caregivers workshops support the LHIN’s overarching aim of helping residents to Live Healthier at Home, and supports the Patients First goal of creating a culture of health and wellness that supports patients in making educated, informed decisions about their care,” says Deborah Hammons, Chief Executive Officer, Central East LHIN. LC Rachel Long is a Communications Coordinator, Central East LHIN Initiatives, Central East Community Care Access Centre.
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The family caregiver dilemma By Jane Vock
When we say, “I don’t have time” it really feels true. Time is such a precious commodity for family caregivers. If you don’t take time for yourself and put yourself on the agenda at the front end of caregiving, it will be harder to do so down the road.
Home & LongTerm CARE | May 2017
CAREGIVING IS OFTEN labour and time intensive, or it can certainly become this. There are often other activities and responsibilities that are vying for your time. These may include raising and taking care of children, caring for a parent, running a household (or maybe even more than one), not to mention the paid work you may do outside the home. Knowing this, taking time for yourself may seem impossible and it may be a reflex when you say, “I don’t have time.” The problem is that, while this can certainly feel true, it does not necessarily mean it is true. What? What the #%@$?? Before you toss the magazine across the room, please consider taking a closer look at the context of what you are saying to yourself about time. As with virtually all of our thoughts, a closer examination can be revealing.
The importance of context First of all, consider when you are most likely to be thinking, “I don’t have time.” What is the context? It seems that this is most often said when someone is suggesting that you should take care of yourself or take time for yourself. So now we can complete the sentence with what is often implicit: ‘I don’t have time for me.’ Stated differently, this thought may also sound like any of the following: • “I am not a priority.” • “I do not deserve the same amount of time and attention as others.” • “Other people are more important than I am.” • “____’s health is more important than mine, which is why I don’t have time to go to the doctor.” Continued on page 10
Jane Vock is a writer for Elizz.com. This article is reprinted with permission.
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Taking time for yourself may seem impossible and it may be a reflex when you say, “I don’t have time.”
Time: The family caregiver dilemma Continued from page 9 How does it feel to think about completing the sentence with the implicit beliefs about your own value? The apparent disregard for your own health and well being can be stark, and hopefully, a call to action.
Re-phrasing the statement Laura Vanderkam, a Wall Street Journal author, has suggested that we replace, “I don’t have time” and instead say, “It’s not a priority.” How would that make us feel? At the very least, re-phrasing the statement may take away that sense of being time’s victim. It also drives home the fact that we are always making choices about how to spend our time. This can be a hard message to hear and this is because we usually believe our (unexamined) thoughts. Byron Katie offers four powerful questions as another way to examine the context of our thoughts. Draw on the above example, “I don’t have time to go to the doctor,” or instead, use what you hear yourself saying. For example, “I don’t have time to…” and ask yourself in a contemplative way: 1. Is it true that I don’t have time to go to the doctor? 2. Do I absolutely know it’s true that I don’t have time to go to the doctor? 3. How do I feel when I believe the thought, “I don’t have time to go to the doctor?” • How do I feel in my body? • What emotions do I feel? • How do I feel about caregiving when I believe the thoughts that I don’t have time? 10
Home & LongTerm CARE | May 2017
• How do I feel about the person I’m caring for? • How do I feel about life? 4. Who would I be without the thought, “I don’t have time?” • What would life be like? • What would caregiving be like? The suggestion here is that this thought might not be as true as it feels. And, if it really is completely true, it may be time (pun intended) to look at what needs to change in order to put “you” (and keep yourself) on the agenda. It is virtually guaranteed that no one is going to come along and give you time. That is, you are the only one that can give yourself time. It is wise to have the ‘long view’ or plan for the future when it comes to family caregiving. If you don’t take time for yourself and put yourself on the agenda at the front end of caregiving, it will be harder to do so down the road. There is a multitude of ways to create and take time for yourself and you are the one that will know how best to do this. It may be drawing on community and institutional supports, or friends and relatives, or shifting your priorities and expectations in the home. Or, it may be through purchasing caregiving services. There is no presumption here that creating and taking time for yourself will be easy or easily achievable, but it will be impossible if you accept your thought, “I don’t have time for me” without questioning it. LC
The Alzheimer Society of Canadaâ€™s new CEO Pauline Tardif
brings firsthand experience as a caregiver to her role. In a recent interview she shared her journey with dementia as well as her goals for her leadership for Canadaâ€™s largest health organization dedicated to improving the quality of care and life for people impacted by dementia.
The Leading Choice in Ontario Home Care
Why Home Care Assistance? Tell us a little about yourself yourself. Iâ€™m a mom and a caregiver to my mom who has vascular dementia. Thatâ€™s very important to me. Iâ€™ve recently moved to Toronto from Ottawa, but originally come from northern Ontario. I have a big French Canadian family. I think growing up in the north and certainly my family played a big role in forming my character. I like the outdoors, I donâ€™t mind working hard, my father was a miner and my mother cared for seven kids. My mom was very active in the community, so my choosing to work in the charitable sector is very deliberate. Itâ€™s something Iâ€™m passionate about. Continued on page 12
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The Alzheimer Society of Canada Continued from page 11
What drives you? I’m very passionate about our sector. Health is probably our best gift in life. Not only do I cherish it personally, but I also think I have a moral obligation to advocate for those who can’t, particularly those with chronic health diseases. I’ve had many different opportunities throughout my career, but I made a conscious decision to spend my time now with the Alzheimer Society. What drives me is moving our mission forward for my mom – and all the other moms and dads, and sisters and brothers out there. The Alzheimer Society has a pivotal role to play. There is so much work to do to make sure that this disease doesn’t impact people the way it is today. If I can play even a small part in that, it would be a great honour for me. I’m pretty excited about it.
What have you learned as a caregiver for your mom? How has that prepared you for your role?
If you’re caring for someone with dementia or want to learn more about Alzheimer’s disease and other dementias, visit the Alzheimer Society of Canada website www.alzheimer.ca for help and information.
Home & LongTerm CARE | May 2017
For anyone living with dementia, everybody around them lives with that disease too – there are very real challenges for caregivers and families. So, I’m really coming into the job thinking about that broad context. I’ve also learned how important it is to be proactive and face this disease head-on. At the beginning, I didn’t know anything – the Alzheimer Society was a lifeline for me. I went through all of the workshops, all of the materials, and all of the webinars from Societies across the country. Anything that allowed me to learn more, I made the time to do that. My sister, who is now the primary caregiver to my mom, also went to workshops with Teepa Snow. So, we’ve really tried to educate ourselves, educate each other, and make sure that we understand what responsive behaviours are and how we can manage around them to give my mom the best quality of life. Of course, you hit a wall at some point where there’s nothing else you can learn or know to help the person. The only
thing left to really have an impact is research. I’m a staunch advocate of research. It’s very important to me and it’s a critical role for the Alzheimer Society to advance our knowledge of dementia and find new approaches to treat and manage the disease. Many researchers are optimistic that we’ll have a cure in the next 10 years, so now is the time for us to focus and ensure that they’re well supported.
As CEO, what is the one thing you want to tell people affected by dementia? We’re here for you. It’s important that people understand that they’re not alone, because dementia can be quite isolating – both for the person living with it and for their family members. Let me share a personal story: When my mother was diagnosed, she was with my father, and they were able to hide her dementia from us for a long time. We didn’t find out until later when she broke her hip and we went to the hospital. So, when my father finally told us about her diagnosis, I said ‘wow, ok, well good for us to know!’ I don’t think they understood what her diagnosis meant. You’re sent off home and told ‘this is what you do’ and if you can’t process that information, and you don’t know that there are people out there who can help, then you’re stuck, and then it becomes very isolating. So, if people are aware that dementia does not need to be isolating and that the Alzheimer Society can play a really critical role, I would be really happy for them to connect with us and know that there is support and information available.
It sounds like stigma also played a big part in your parents’ reluctance to disclose your mom’s diagnosis Yes, it’s quite interesting the dichotomy of what we thought dementia was and how we reacted to it in the 60s, for example, versus how we see it today. Back then, we would say ‘oh, she’s got dementia,
she’s gone crazy,’ and we would have her committed to an asylum and send her away. There were no other care options, and there was very little information. So for my parents’ generation, that’s what they knew and remembered, and that created fear and reluctance. But today, we understand that this is a manageable disease, we’re able to cope with it, but we’re still very, very far away from releasing that stigma. Like with mental health, for instance, they’ve come a long way, but they’ve still got a ways to go. And we haven’t even started yet, in my view, in terms of de-stigmatizing dementias. Even at the beginning, I was asking, ‘how do I explain this to people?’ And that’s unfortunate, because stigma not only impacts the person with dementia, but also the ability (or inability) of family and friends to cope with it. So, we can’t shy away from the impact of it, we can’t shy away from the stress it causes, the challenges of caregiving, the enormous challenges faced by healthcare professionals and long-term care. The Alzheimer Society has a tremendous role in working with the public, and with healthcare professionals and various organizations to ensure that they’re able to honour the quality of life of these individuals, and continue moving away from that perception of the 1960s towards a very simple, honest, candid description of what it is to live with dementia.
What are you looking forward to most about leading the Alzheimer Society of Canada? I want to have an impact. I want to make a difference. And so far, I see that same passion in our staff and volunteers across the country. I only see people who are here because they choose to be – that’s got to mean something, and it certainly reconfirms that my decision to take on this role was the right one. We’re really lucky to have people like that who are so driven and passionate. I want to harness that passion so we can have the greatest impact on our mission. LC May 2017 | Home & LongTerm CARE 13
Vision changes What loved ones might not tell you By Marguerite Thomas and Dr. Susan Leat
ANYONE CAN HAVE VISION DIFFICULTIES, but not everyone can plainly state their problems or seek effective help. As a caregiver, you may be responsible for a loved one who has vision issues, but who cannot clearly tell you. Their slips, trips or falls could be dismissed as being due to clumsiness or minor coordination problems. However, it could be due to poor vision. How can you tell? Watch for a loved one having difficulty recognizing a face across the room, difficulty reading the newspaper or watching television, or not noticing objects in their side vision, tripping over objects or hesitating at steps or changes in the flooring. At age 65 and older, all adults should have an annual eye exam. Many common eye conditions do not have external signs. Glaucoma damage is irreversible, so early detection is paramount. Macular degeneration and cataracts show no signs to the casual observer. Regular exams, conducted by a Doctor of Optometry, mean that health and vision issues are being detected and treated early. 14
Home & LongTerm CARE | May 2017
There are several aspects of vision related to falls. Visual acuity is the ability to see small objects that are black and white, while contrast sensitivity shows how a person can see larger objects that are shades of grey. Older adults can experience decreased visual fields which will decrease their side vision. Depth perception may become poorer, resulting in not seeing the depth of a step and taking a misstep. Deficiency in all these aspects of vision is related to falls. Another factor related to falling is visual attention or the ability to process and respond to two things at once which may affect walking safely around objects. Other risk factors can include multifocals/bifocals spectacles (including no line bifocals) and large changes in the prescription of glasses. Sometimes a new prescription will cause the world to appear tilted, or objects may appear further away or closer than they actually are. Older people may take longer to adapt to prescription changes and should be especially careful to gradually get accustomed to new glasses.
Environmental improvements include: • having good lighting, but not glare (e.g. from shiny surfaces or lights without shades) • using night lights, but turning on the lights when getting up at night is even better • keeping eyeglasses clean and in good repair • reducing clutter and busy patterns • providing contrasting color strips or a painted line at the edge of stairs or any floor level change • avoiding abrupt changes in flooring, as people with dementia may think there is a step or a hole Finally, as we age, we are more prone to dry eye disease, which is inadequate lubrication from tears. Treatment generally starts with artificial tear eye drops, but a professional consultation should be sought if you notice: • red or painful eyes. • flaking, discharge, or a sore on the eye or eyelid. • an injury to the eye • a bulging eye or a drooping eyelid.
• joint pain, swelling, or stiffness and a dry mouth along with dry eye symptoms. • no improvement within a few days despite using the tear drops Prevention or symptom relief include: • not smoking and avoiding second-hand smoke, direct wind, and air conditioning. • using a humidifier, especially in the winter • limiting allergy and cold medicines that are drying and may worsen symptoms. • purposefully blinking more often. Resting the eyes once in a while. • cleaning eyelashes regularly and applying warm compresses • other more specific interventions can be recommended by your optometrists or ophthalmologist. LC Marguerite Oberle Thomas, is Coordinator, Fall Prevention, Community of Practice and Dr. Susan Leat, is a Professor, School of Optometry and Vision Science, University of Waterloo.
Resources For further information, check out the Eye Health Library of the Ontario Association of Optometry http://tinyurl.com/EyeHealth-Library. The website provides links for you to learn more about the role of Doctors of Optometry. Check out What is the difference: Doctors of Optometry, ophthalmologist and opticians; Eye Care for Older Adults; and Risks Associated with Sun Exposure. For more detailed vision/ fall prevention information, go to www. youtube.com/SHKNetwork and scroll down to view the archived webinars by Dr. Susan Leat, Professor and clinician in the Paediatric and Special Needs Clinic and Low Vision Clinic, University of Waterloo School of Optometry and Vision Science. The webinars are shared courtesy of the Fall Prevention Community of Practice www.fallsloop.com. May 2017 | Home & LongTerm CARE 15
Tracy Lafleur accepts her VHA Home Healthcare’s Heart of Home Care Award.
Tracy’s most important patient By Christina Zimmerman
MOST PEOPLE WOULD AGREE that the job of a paediatric home care nurse isn’t an easy one. There are the night shifts, the emotional challenges of caring for kids with a severe illness or disability and of course being a confident and supportive “rock” to the parents of these children. But what if one of your patients turns out to be your own son? That’s the incredibly difficult dual role Tracy Lafleur, a paediatric community nurse, had to take on when her son Ryan was diagnosed with terminal brain cancer at the age of 19. Since her son’s diagnosis, Tracy has been by Ryan’s side every step of the way, taking care of all his daily living activities. She continues to work full time, caring for other medically fragile children overnight so she can spend every waking moment with Ryan during the day. She finds time to rest when Ryan naps but she always makes sure she is awake to administer Ryan’s medications and often puts his needs ahead of her own. “She even offers to help 16
Home & LongTerm CARE | May 2017
when professional assistance is in the house and she should be taking a break,” says Sarah Yeomans, who nominated Tracy for the award. “She is always happy and energetic, even though I know she’s running on no sleep. She truly does have a heart of gold.” Sarah nominated Tracy for VHA Home HealthCare’s Heart of Home Care Award – an award which celebrates unpaid Ontario caregivers who go above and beyond to care for a loved one – and which she accepted in April at Toronto’s Caregiver Appreciation Day Event at Toronto City Hall. Tracy was treated to a lunch with other caregivers, a welcome by Toronto’s Mayor, John Tory and a special performance by R & B singer Jully Black. “When I first learned that I have brain cancer I thought my life was over. My mother and I cried together,” writes Ryan. Ryan’s cognitive functions have remained but the cancer he has caused him to lose a lot of his physical abilities and most of his speech.
Tracy’s day is a full 24-hours and she typically runs on three to four hours of sleep. But despite the overwhelmingly challenging situation the family faces, they seem to find plenty of time to laugh and joke with Ryan often sending texts that tease his two sisters or joking with his mom and dad. “We are happy people. We take every day as another good day, one step at time, one day at a time and with lots of humour,” says Tracy.
• Do your research! First get as much information as you can from your doctors and then start investigating on your own as knowledge is power. • Take as much help as you are offered, because it really makes a difference. • Make sure to take time for yourself. As busy as you are, you have to remember that you deserve some time too. You have to be able to relax and unwind a little bit.
“Caregiver is an oversimplification of what she is to me, she more than deserves it (the Heart of Home Care Award), writes Ryan. View Tracy and Ryan’s story at http://bit.ly/HLTCTracy .
Thanks to PACE Consulting and Teak Printing, Flashframe Digital Media, BDO, and Home and Long Term Care Magazine for their generous sponsorship of the 2017 Heart of Home Care Awards. LC
Tracy’s caregiving tips: • Find out as much as you can from your doctors. Ask lots and lots of questions.
Christina Zimmerman is Communications Specialist at VHA Home HealthCare.
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Strong wrists for active living
Nimble fingers, pliable hands and strong wrists are vital to maintaining an active, independent life. Simple everyday activities such as fastening buttons, opening jars, hammering a nail into the wall or lifting a pot from the stove require strength and facility in our wrists and hands. Not to mention playing golf, gardening or knitting.
Barbara Grant is the Founder and Director of Retrofit Pilates in Toronto. She can be seen weekly on Rogers television as the host of Shape Up with Barbara Grant. http://www.retrofit.ca/barbs-blog
Home & LongTerm CARE | May 2017
AS WE AGE our hands can become stiff and sore. This can be a result of common conditions such as arthritis in the hand or fingers, tendonitis in the wrist or elbow or carpal tunnel syndrome. As these conditions worsen, they affect our ability to perform various activities. As we decrease our activity level, our strength and mobility decreases contributing to a cycle of decline. In other words, if knitting, lifting pots and hammering nails hurts, we avoid doing it. And the more we avoid these activities the weaker and less mobile our hands become. Luckily there are many simple exercises we can perform at home daily to build and maintain strong wrists for active living. 1. Tennis ball squeeze. Squeeze a tennis ball in your hand with your palm facing upwards and your elbow bent at 90 degrees. Hold for 5 seconds and release. Repeat 10 times on each side. Notice the tension created in your hand, forearm, bicep and shoulder.
• Keep your fingers clasped and stretch your arms away alternating your palms to face toward you and away from you. Repeat 10 times. • With your arm straight in front of you and your palm facing away, gently pull your fingers toward you and hold for 5 seconds. Repeat 10 times on each side. • With your arm straight in front of you and your palm facing toward you, gently pull your fingers toward you and hold for 5 seconds. Repeat 10 times on each side. You can perform these exercises with the resistance of the balls and bands or with no resistance at all. Be mindful of your tolerance. Your muscles may fatigue and get sore, but you should not experience pain in your joints. Try doing one exercise plus the stretches every day for a week, then adding one additional exercise each week. In no time at all you will be opening jars again with ease. LC
2. Elastic band stretch. Wind an elastic band around your thumb and each individual finger. The ones wrapped on broccoli from the grocery store are a good tension. Splay your fingers and thumbs. Hold for 5 seconds and release. Repeat 10 times on each side. 3. Wrist extension with a resistance band. Hold a resistance band in your hand with your palm facing upwards and your elbow bent at 90 degrees. Support your forearm with your opposite hand and stand on the resistance band. Pull your palm up toward your forearm and release. Repeat 5-8 times on each side. 4. Wrist flexion with a resistance band. Hold a resistance band in your hand with your palm facing downwards and your elbow bent at 90 degrees. Support your forearm with your opposite hand and stand on the resistance band. Pull the back of your hand up toward your forearm and release. Repeat 5-8 times on each side. 5. Stretches. • Clasp your hands together in front of you with your elbows bent down and circle your hands around 10 times in both directions.
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Caregiver SOS Finding the proper care is full of
difficult decisions My dad is in late-stage Alzheimer’s and not doing well. The doctors said we should start thinking about some decisions around care. This all sounds sad and complicated. Signed, “At a loss.”
The late stage of Alzheimer’s disease is full of difficult decisions, as the individual’s health declines and they lose who they were. The affected person can no longer move around independently, speak or be understood. They will need help with all activities of daily living. Swallowing and eating are usually an issue. In this situation, families are often “at a loss” about what to do. If you are lucky, the person with dementia may have prepared an advance directive as to their wishes. However, this is rarely done. If there is no advance directive, those closest to the patient – usually the fam-
Home & LongTerm CARE | May 2017
ily – must decide based on what they know about the person and believe they would choose. These decisions look not only to the person’s values and beliefs, but also what is needed to keep the person comfortable. It is important to understand the decisions that are at stake. This means advocating and being aware of the situation that your relative is in, and keeping informed of all medical changes in their situation. These care decisions are among the hardest decisions that families may face. Some examples of medical issues that may come up at the closure of life includes: ventilators (breathing tubes), feeding tubes, cardiac resuscitation and intravenous support. Each therapy has its pros and cons. For example, ventilators are used when a person can no longer breathe on their own, but they can cause distress and discomfort. Feeding tubes or lines are used when a person cannot swallow properly, but their use can result in infection and discomfort. Many medical experts also believe that feeding tubes don’t extend life.
Additionally, restraints may be needed to prevent an incapacitated patient from inadvertently removing the line. Hydration, administered through an intravenous line when a person cannot drink, does not provide the nutrients needed to sustain life and may prolong the dying process. Resuscitation (CPR) is used when heart function stops or when breathing stops. This can be painful and traumatic and may leave a person in a worse state than before. There may be differences between the wishes of the person with dementia and your personal beliefs. But it is their wishes that should direct their care. To feel less at a loss, you also need to ask the right types of questions. How will any given treatment help the patient’s situation? How long will the help last? What might be the downside of the treatment? How will it affect the person’s pain and suffering? It may be helpful as well to ask the health
care professionals the following question: “What would you want done if it was your relative who was so ill?” Family conflicts may arise and mediation or support by a trained professional – physicians, social workers, spiritual leaders and other care providers – can help you talk these situations out. Hospitals often have staff with expertise in this area. Some family members may not be as able to come to terms with an upcoming death. Others may simply need time and mindful exploration. There is no doubt that making decisions for those at life’s closure is difficult and fraught with uncertainty and risk. But thoughtful and open consideration of medical alternatives, and of the goals and risks of treatment is the best preparation of all. A great resource is: Good Medicine: The Art of Ethical Care in Canada (Philip Hébert M.D., Random House 2016) this is an easy-to-read guide for those faced with making these hard choices. 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 baycrest.org/dacg Email questions to caregivingwithnira@ baycrest.org. This article originally appeared in The Star.
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Kicking family caregiver guilt
to the curb By Jane Vock
Guilt seems to be an occupational hazard for many family caregivers. While it may be impossible to prevent feelings of guilt, we can take certain steps to process and manage caregiver guilt when it does arrive at our door. THE TENTACLES OF GUILT extend into virtually every area of caregiving and the downside of caregiver guilt far outweighs any benefits. As a family caregiver, you may feel or have felt guilt for: • Being well or healthy yourself • Not being a ‘good enough’ caregiver • Not ‘good enough’ can mean not patient enough, not sensitive enough, not kind or caring enough, not skilled enough, not devoted enough, not spending enough time, etc. • Feeling resentment or burdened with the caregiving role • Doing something for yourself or taking time for yourself • Not liking or not loving the person you are caring for • Wishing the caregiving would end by the person you are caring for going into hospital, or longterm care, or even dying
What to do when feelings of caregiver guilt arrive at your door It has been said that guilt is a kind of moral compass to police our behaviour. It can be a mobilizing force to make changes to our behaviour and in this way guilt can serve a useful purpose. 22
Home & LongTerm CARE | May 2017
Often, however, we can let guilt trap us into just feeling badly. This trap puts us at risk of depression and does not motivate us to make any changes. While it may be impossible to prevent feelings of guilt, we can take certain steps to process and manage caregiver guilt when it does arrive at our door: • Acknowledge the feelings of guilt. Pushing them away doesn’t work. What we resist persists. • Explore the context for the behaviour or action you are feeling guilty about. What was going on at the time? Was the person you are caring for being ‘difficult’? Having a bad day? Were you feeling tired? Depleted? Anxious? Angry? Pulled in many directions? Looking at the context opens the door for self-compassion and self-acceptance. In truth, you were doing the best you could, given the context. • Examine the feelings of guilt. Just because you feel guilty doesn’t mean it is warranted. This bears repeating. Feeling caregiver guilt does not prove you did anything wrong. Guilt isn’t always a moral compass. It can be an indicator of a pattern of self-denial, self-abuse, self-criticism and even self-destruction. Why are you experiencing caregiver guilt? Do you have unreasonable expectations of yourself? Is there some perfectionism at play here?
Caregivers in particular seem prone to both unrealistic expectations of themselves and being overresponsible for others (including their feelings, health, wellbeing, and recovery). You may feel guilty about taking time for yourself. Perhaps you want to go to a movie, out for coffee, to lunch with a friend, or to the gym. Family caregivers will sometimes say, “Well, it is selfish of me to do these things because – is not able to’ or ‘it is not fair for me to go out because – is stuck at home.” This is a perfect example of both self-denial (denying yourself a break) and being over-responsible. You can support and care for someone while being sensitive to their experiences of illness, disease, or injury; however, you do not have the power to control or change their feelings about their experiences. This is not a reasonable expectation for any caregiver. Ultimately, this is about setting boundaries. Boundaries between you and the person you are caring for. Further, if you try to protect and control someone else’s feelings and experiences, they are not given the opportunity to learn to manage their own feelings and are forever dependent upon you. This level of dependence doesn’t serve either one of you and is a feeding ground for all kinds of negativity.
Keep things realistic Ask yourself, what is realistic? If you are not sure, ask your best friend or someone close to you what they think is realistic. • Is it enough or is it ever enough? • Are these reasonable standards by which to judge yourself? • Are these expectations yours or are you trying to live up to someone else’s expectations of you? Trying to please and get approval from someone else sets us up to feel inadequate as well as take on blame and over-responsibility.
Ask yourself what you would say to your best friend if they were telling you about their caregiver guilt. Treat yourself as well as you would treat your best friend. People will typically not judge others as harshly as they judge themselves. Do you regularly put someone else’s needs ahead of your own? What is it going to take to put yourself on the agenda?
What should you do with these feelings of caregiver guilt? IF you conclude that your caregiver guilt is warranted, simply TAKE RESPONSIBILITY AND FORGIVE YOURSELF. You can have a healthy dose of regret and, if necessary, a plan to correct the action you have felt guilty about. You can also prevent it from happening in the future. Taking responsibility and forgiving yourself go hand-in-hand because taking responsibility without self-compassion (or considering the context) is nothing more than self-punishment/abuse. LET IT GO. The initial feelings of caregiver guilt aren’t the real problem. Feelings are feelings and we all experience the range of them. The real problem is when we accept the feelings of guilt without examining the context and still holding on to them or clinging to them. And it is only us holding on to these feelings of guilt. Does this all sound pretty harsh and without compromise? Well, indeed it is. Unwarranted or inappropriate guilt truly serves no one. It will also suck the life and energy out of you. Refusing to be ruled by caregiver guilt is part of taking care of you! The caregiving journey is destined to be one of angst and suffering if you let guilt move in and stay. While you do not necessarily have to kick it all the way to the curb, caregiver guilt should at the very least be shown the door. LC
Jane Vock is a writer for Elizz.com. This article is reprinted with permission.
May 2017 | Home & LongTerm CARE 23
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