A bi-monthly newsletter published by the Supporting Family Caregivers Across the Lifespan Project

Transcription

1 T h e Fa m i l y C a r e g i v e r s Grapevine January/February 2012 A bi-monthly newsletter published by the Supporting Family Caregivers Across the Lifespan Project North Shore Memories and More By Laura Anderson This article originally appeared in The North Shore News on March 27, Reprinted with permission. family. They were living an active, outdoor life, taking on new experiences and making new friends. Then, in 2008, David was diagdavid and Sharon Moxon are graduates of a nosed with early-onset Alzheimer's disease. ground-breaking learning program new to the Often, a diagnosis of Alzheimer's or other North Shore. Designed for people with memforms of dementia disrupts people's lives. As ory challenges and their partners, North they focus increasingly on the condition, soshore Memories and More takes the focus off cial habits tend to fall away. the condition and places it on the individual. Not so for the Moxons. They made it their pri"when we heard about the program, we ority to maintain their lifestyle, staying conthought, 'This could be really interesting. Here nected with family and friends, continuing is something we can do together,'" Sharon with hiking and biking, tennis and travel. In says. Mexico last year they found Luna, "a Mexican In 2000, the Moxons realized their long-term rescue dog," says Sharon. plan to retire to the West Coast, choosing North Vancouver to be close to friends and "No, no," David clarifies, "Luna is a rescue dog from Mexico."

2 The Family Caregivers Grapevine Page 2 North Shore Memories and More continued from page 1 Luna is part of the family, her care shared between the two, with Sharon taking on training and David in charge of walks. After David was diagnosed, the couple educated themselves about resources and community programs, linking up with the Alzheimer Society of BC and the North Shore Family Caregiver Support Program where they learned about North Shore Memories and More. The program, designed for caregivers and care receivers, or care partners to participate in together, aligns with the active and involved life David and Sharon have created for themselves. Information, resources and referrals are provided throughout the program but memory is not the main focus. Every aspect of the program is designed to stimulate and encourage participation. A sense of humour, for example, is not lost along with memory, though it may change. lightness to our lives. It brought us new friends and new experiences to share with them. Our hope is that by sharing our story, it will spark an interest in others to try this." "That's why the group is so good," says Sharon. "So much of the person is still there inside and there is so much they can do. We're all at different stages in the journey but everyone is equally engaged and involved in sharing ideas and opinions. We enjoyed every moment of the program but the camaraderie with the other participants was so valuable. It's hard to explain what it means to sit around a table with a group of people and laugh. "This is a happy story for us," says Sharon. "Memories and More brought laughter and The next session of North Shore Memories and More begins on Thursday February 16, 2012, 1:30 to 3:30. For more information contact Julie Doresemaine at , memoriesandmore@live.ca. Registrations is required.

3 January/February 2012 Page 3 Legally Speaking: Planning for Incapacity by Jackie Morris None of us can predict when we might become incapable of managing our day to day financial affairs or when we might become physically disabled to the extent that we cannot sign documents. A simple fall off a ladder or a car crash can happen at any age with devastating legal consequences, let alone all the physical, mental and emotional ones. The most important legal document everyone should have in place is a Power of Attorney, no matter what your financial situation is. Even if all assets are held jointly with your spouse, you cannot file tax returns, nor can you sell or remortgage a home. If your spouse becomes incapacitated and you don t have Power of Attorney you cannot fully deal with other assets without first applying to the court to become a committee, a costly and time-consuming legal procedure. Given that a Power of Attorney is important to have in place, it should be done as soon as possible before accident or illness renders you incapable. What is the test for capacity? Many of you will have heard of the Mini Mental Status Exam often given by doctors. Its most memorable feature is counting down from 100 by 7 s. Doctors use this test to screen for mental impairment and sometimes tell lawyers that a client/patient is not mentally capable of giving instructions for signing a Power of Attorney based on the exam results. That may indeed be the case. However, the capacity test for Powers of Attorney is very specific and is now set out in the new law that came into effect in September It firstly assumes that you are capable. If there is some doubt, then you must demonstrate the following to the satisfaction of the lawyer: your knowledge of your assets and their approximate value your knowledge of obligations to dependants your understanding that the person you ve appointed can do anything that you could do with your legal and financial affairs with some important exceptions your understanding that, unless the attorney manages your affairs prudently, the value may decline your understanding that the attorney might abuse the trust placed in him or her your understanding that you may revoke the Power of Attorney at any time, unless you become incapable. Underlying this test is the fact that you must know who you are, that you are talking to your lawyer and that you are discussing a Power of Attorney. No one else may help with answers or even be present. continued page 4

4 The Family Caregivers Grapevine Page 4 Websites of Interest Alzheimer Society of British Columbia The Alzheimer Society of British Columbia s website, is an excellent starting point for anyone who would like to find out more about Alzheimer disease, other dementia s and where to find resources. The site offers information for those who have been diagnosed with a dementia and for those who are caring for someone affected by it. Anyone can subscribe to their free quarterly bulletin, InSight that offers helpful strategies. The Alzheimer Society of BC is active in advocating for people with Alzheimer s and the website is a good place to find out about current issues in dementia support. Legally Speaking: Planning for Incapacity continued from page 3 Keystone Eldercare Solutions In the Fall, North Shore Community Resources Caregiver Support Project conducted a series of well-attended webinars that were not only informative but they also generated meaningful discussion among participants. Gerontologist Wendy Johnstone of Keystone Eldercare Solutions, presented two sessions, Coping with the Transitions to Care and Communicating with Residential Care staff. She shared a wealth of information. On her website Keystone Eldercare Solutions, Johnstone explores a range of caregiving issues on her blog such as grief, respite and life balance. Also posted on the website under Resources are articles she has written for The Comox Valley Record. When someone is in failing health, there may be good and bad days. There may be times of the day when the person is more alert. The lawyer need only be satisfied with responses when taking instructions and in witnessing the person s signature. Timing may be crucial, but the better plan is to not delay. Get it done and tuck it away. None of us can predict when we might become incapable of managing our day to day financial affairs...

5 January/February 2012 Page 5 Rest and Rejuvenation by Josie Padro Renewal and rejuvenation they re words that conjure up fluffy bath robes and spa treatments. Caregivers may regard renewal and rejuvenation as indulgences that just don t have a place in their lives. The best way for caregivers to ensure their own good health and that of the person they re caring for, however, is to take time to look after themselves. Respite is an opportunity to get that break. Turns out it s not a luxury; it s an important practice for staying healthy. One in five people over the age of 45 are engaged in some form of caregiving, and of those, most work outside the home. In recent years, the shift away from institutional care has meant that even more caregiving than ever before is being provided at home by family or friends. Caregivers report that looking after their friend or relative can be a meaningful and satisfying experience.along with its rewards, caregiving can take a toll on physical and emotional health and can eventually lead to burnout. Early signs of burnout include waning energy, lowered productivity and loss of motivation. If unaddressed, burnout may contribute to back and muscle pain, hypertension, depression and eventually to physical and emotional exhaustion. The goal is to prevent burnout by watching for those early signs and taking regular breaks. Respite takes a number of forms and can be different for each individual. A replacement caregiver may come to the home for a few hours or stay several days. The person in need of care may be enrolled in a day program, or they could stay overnight at a specialized care centre. Respite can be informal. Friends, family, neighbours and acquaintances can be an important source of support. They often have a desire to help, but may not know what they can do. They can be asked to help with a specific task, such as odd jobs around the house, once a week, or even once a month. Caregivers need to take regular breaks even before the person they re caring for needs someone on site to look after them. Taking time for themselves every day is a good start. They should choose an activity they enjoy and that helps them feel in touch with themselves and the outside world - whether it s a yoga class, a walk or some uninterrupted reading. The key is that caregivers need to stay active and connected to their social network. continued on page 6

6 The Family Caregivers Grapevine Page 6 Rest and Rejuvenation continued from page 5 Respite is available through a number of public and private agencies. The Health and Home Care Society of BC operates the Family Respite Centre ( ) where those in need of care can stay overnight for up to 30 days. Vancouver Coastal Health has respite beds and operates two adult day programs on the North Shore, Margaret Fulton and West Vancouver Adult Day Centre. For more information on accessing these services contact Vancouver Coastal Health Home and Community Care Program at North Shore Community Resources has a list of Home Support Agencies on the North Shore many of whom offer respite services. For more information on respite, caregiver support and how to access it, contact Caregiver Support at The reality is rest and rejuvenation play an important role in a person s ability to cope and continue providing good care. Taking time to engage in meaningful activities is a way for caregivers to stay healthy, and it just may include an afternoon at the spa fluffy robe and all. Book Review: Creating Moments of Joy by Josie Padro Using a gentle and reassuring style, Jolene Brackey offers insight into the thought processes of those with dementia. She leads the reader through scenarios that can arise and offers examples of how to deal with them. Brackey advises caregivers to take cues from the person with dementia. For example, if the person was a fisherman, allow him to show you how to cast. If the person used to set the table every day, give them an opportunity to do it again. She reminds readers to take joy in activities such as reading aloud and listening to music. Most importantly Brackey offers hope that the person with dementia can still share meaningful times with those they love. Not only can those moments be meaningful, but they can also contain humour and joy.

7 January/February 2012 Page 7 Keeping Your Heart Healthy By Josie Padro February is Heart Month. The Heart and Stroke Foundation suggests a number of simple ways to reduce stress and keep your heart strong. Stretch Signs of tension often show up as a headache, neck discomfort, or a tightly clenched jaw. Find a quiet place to sit or stand. Close your eyes and gently move your head front to back several times, as if you re nodding yes. With your eyes still closed, gently move your head from side to side as if your nodding no. Open your mouth wide and stretch the muscles in your jaw. (If any of these movements cause pain, stop and consult with your health care provider.) Breath Deeply Take three deep, slow breaths. With each breath think about gently filling your lungs; hold the breath for a moment, then breathe out slowly. Taking those three mindful breaths can dissipate stress and help you carry on with your day. Go for a stroll The health benefits of walking are well documented. The activity gets your muscles moving, your blood circulating and your heart pumping. For even greater health benefits, Get a good rest Sleep provides the body with an opportunity to regenerate and renew it s resources. invite a friend to go along with you. You ll feel more connected and you might even share a good cry or a good laugh. Some studies have found that lavender has a calming effect and helps those who have difficulty sleeping. Place dried lavender flowers in a satchel and slide it under your pillow at night or add them to your bath water. (Dried lavender can be ordered through health food and craft stores.) Check with your physician to avoid problems with allergies or medication interactions.

8 The Family Caregivers Grapevine Page 8 Medications and the Dementias by Josie Padro In recent years improvements have been made in caring for those who live with dementia. Research has led to new treatment approaches and a new generation of drugs are slowing the progression of the disease. According to Dr. Stephan Kiraly, a geriatric psychiatrist, there are a number of conditions that cause dementia. Alzheimer s disease is only one of those. Many others exist including frontotemportal dementia and vascular dementia, which may be the result of stroke. While there is no cure for these types of dementia, there are medications that may delay progression of mild to moderate dementia. Studies have found that if medications are started early, there is a chance the disease progression can be delayed by up to two years. Dementia often begins with vague symptoms. In his practice, Dr. Kiraly finds the symptoms that surface first are depression, anxiety or sleep problems, all of which may be the result of the person s increasing distress over their loss of mental functioning. These problems are treated in the same way as they would be in a person without dementia. It s no surprise that with all these symptoms, a person with dementia can end up on a whole host of medications. In addition, other medical problems, unrelated to the dementia, may develop such as diabetes and thyroid disease, which can also add to the already substantial pile of daily pills. Dr. Kiraly points out the goal of treatment is to use the fewest medications possible at the lowest doses. continued on page 9 Laugh lines Overheard at the World Volunteer Conference: In response to the observation that volunteers are too often seen as amateurs: "Just remember: Noah's Ark was built by amateurs. The Titanic was built by professionals."

9 January/February 2012 Page 9 Medications and the Dementias continued The important thing, he says, is that medication should be periodically re-evaluated, and at times, it may be appropriate to stop a medication to assess whether it is still necessary. Keeping track of each medication in addition to learning about how to care for a family member with dementia can be an overwhelming task. Dr. Kiraly advises families to learn as much as they can about dementia through sources such as the Alzheimer s Society of BC and by sharing their experiences in support groups. North Shore Community Resources Society Caregiver Support also offers support (network) groups. Pharmacists are an excellent resource as they can explain how medications work and what side effects or possible interactions to watch for. There s no doubt those with dementia and their caregivers can be faced with a dizzying array of medications. Understanding those medications and ensuring they are achieving the intended effect requires careful attention from both the health care provider and the caregiver. Luckily, advances in the understanding of how to manage dementias has meant a better quality of life for people with dementia and those caring for them. 10 Warning Signs of Dementia 1. Memory loss that affects day-to-day functioning 2. Difficulty performing difficult tasks 3. Problems with language 4. Disoriented to time and place 5. Poor or decreased judgment 6. Problems with abstract thinking 7. Misplacing things placing everyday objects in places where they don t belong 8. Changes in mood and behaviour 9. Changes in personality Where to Turn 10. Loss of initiative may need prompting to perform normal activities. The Alzheimer Society of BC The Clinic for Alzheimer Disease and Related Disorders, is located at the UBC Hospital. Patients referred to the clinic by their family doctor clinic are assessed medically and given a series of neurological tests. They are also seen by a genetic counsellor and social worker. Test results are reviewed at a family conference and possible community supports are discussed. Patients are followed-up yearly. Contact the clinic by phone at

10 The Family Caregivers Grapevine is a bi-monthly publication intended to support family caregivers by promoting the importance of self-care while providing practical information and resources. If you have any questions or feedback about the newsletter, please contact the editor at: josie.padro@nscr.ca The Supporting Caregivers Across the Lifespan Project is located at: North Shore Community Resources Marine Drive (Capilano Mall) North Vancouver, BC V7P 1S3 Tel: Fax: This project is funded by the Government of Canada s Social Development Partnerships Program. The opinions and interpretations in this publication are those of the authors and do not necessarily reflect those of the Government of Canada. The Supporting Caregivers Across the Lifespan Project The Supporting Caregivers Across the Lifespan Project works in partnership with the North Shore Caregiver Support Program. Together we provide a wide variety of educational workshops, caregiver support and resources for family and friends supporting someone with an illness or disability. The Project provides: Education sessions for family caregivers Social recreation programs Expressive arts programming Tele-learning education sessions for family caregivers (educational workshops over the phone) Education for professionals working with family caregivers Education for employers Additional activities provided by the Caregiver Support Program: Family Caregiver Network groups Stress management and relaxation workshops Telephone support and individual consultation Educational workshops Information and referral to community services Library with books, videos, and other educational resources Are you a family caregiver? You are if you provide a family member or friend who is chronically ill, elderly, palliative or living with a disability with any of the following types of assistance: Personal Care: dressing, bathing, eating Household Work: house cleaning, shopping/errands, preparing meals, yard work Coordination of Care: transportation, appointments, arranging services, visiting Support: phone check-in, supervision, emotional support Nursing Care: medication, changing dressings You re not alone. We re here to help. For more information, contact Helen at or helen.wait@nscr.bc.ca.