Advance Care Planning September/October 2018 Family Caregivers Grapevine By Cassandra Van Dyck This past winter, my dad sent me an email with a Representation Agreement attached, naming me Representative 2 (backing up my step-mother). Included in the documents were Health and Personal Care Instructions, detailing my father s wishes for CPR, medical interventions, and life support. Now, receiving these documents did not come entirely out of the blue. My dad has been on a roller coaster health journey for the past two years or so, with a diagnosis of Chronic Obstructive Pulmonary Disease, a malignant tumour removal surgery, and most recently a brain aneurism repair. His mortality has been on his, and his family s minds. I have always hated thinking about living life without my father in the world, as I m sure many people do with their own loved ones. It has not been unusual for me to ask him to change the subject when he talks about his aging process or the illnesses he lives with. I was as surprised as anyone by my reaction to receiving these Advance Care Planning documents. I d expected to cry, or avoid them, or feel angry at the number of diagnoses being thrown his way. Instead, I felt calm, and even comforted. I felt at peace knowing that if a time comes when he cannot speak for himself, we will have something to refer to that reminds us of his wishes. It made me feel that there was a sense of control and empowerment for my father amidst the uncertainties. I am lucky enough to have a loved one who knew the importance of this document and took the initiative while in good health to complete one. Not every caregiver will have a loved one who is so aware of their options, or so willing or able to plan and complete these documents. Advance Care Planning with your care part- NSCR Caregiver Support Program renew strength, gain knowledge -ner could be challenging, and you may have to initiate the process. These conversations are not easy to have. Many caregivers avoid conversations about end-of-life care. It can be deeply uncomfortable and emotionally taxing to imagine life without your loved one. The temptation to put the conversations off until they must happen is understandable. However hard they might be, the alternative is making decisions about your loved one s care at the last minute, which can be very stressful and uncomfortable. Discussing your care partner s wishes well in advance of having to implement them allows your spouse or relative to express their values, concerns, and wishes. It provides an opportunity for you to hear and understand what they want, so that you can prepare yourself and support them in the best way possible. Planning for the future with your loved one helps to preserve their dignity, and it will help you to avoid making decisions on their behalf, without truly knowing if it s what they d want. Advance Care Planning documents accomplish four things. They:
September/October 2018 Page 2 Identify the person or people who you want to make health care decisions for you if you are not able to do so yourself. List health care treatments you agree to, or refuse, if a health care professional recommends them. Answer whether or not you would accept or refuse life support and life-prolonging medical interventions for certain conditions. Include your preferences regarding residential care, should you not be able to be cared for at home. Advanced Care Planning might be a triggering subject both for yourself and for them. If you notice that you re having a hard time bringing up the subject, I encourage you to speak with someone you trust to work through your feelings. You ll need support so that you can be supportive and fully present for your care partner. If you re not sure how to start the conversation with your loved one, try saying something like this: Mom, I know this is a difficult thing to talk about, yet I was reading about Advance Care Planning and I think it s something we should talk about. I want to make sure that you re taken care of in the best way possible. Do you know much about it? This is most likely a new experience for you also. Acknowledging that care planning it can be an uncomfortable topic and letting your loved one know that you re bringing it up from a place of compassion can soften them to the conversation. It might be helpful to have information on hand, so that you can provide them with as they d like to know. When your loved one is ready to talk about creating these documents, AdvanceCarePlanning.ca lists five steps that can be helpful to get started: understanding about your care and specific medical procedures? Learn about different medical procedures and what they can t do. Decide who will be your substitute decision maker someone who is willing and able to speak for you if you can t speak for yourself. Talk about your wishes with your substitute decision maker, loved ones and your doctor. Record your wishes. It s a good idea to write down or make a recording of your wishes. Once your loved one has clarified their wishes, you can support them to proceed with official documents. I brought my two-year old with me to meet my dad at a Notary Public to sign the Representation Agreement. He played and laughed while we waited, and the signing took less than 20 minutes. We all went for lunch after. Talking about end-of-life plans with my father and taking the steps needed to assure his needs were met if he couldn t speak for himself had given both him and I feelings of peace, control, and preparation. What had seemed so scary a few years ago ended up feeling much more routine than I d anticipated like submitting a passport application or renewing a driver s license. If you are feeling like it might be the time to speak with your loved one about Advanced Care Planning, remember to remain kind to yourself. This conversation may happen over several days, or even weeks. Be patient with yourself and your spouse or parents, and leave or come back to the conversation as needed. For more resources to help you with Advance Care Planning, see our Wellness Corner on Page 4. Think. What are your values, wishes, beliefs and
The Family Caregivers Grapevine Page 3 September 2018 Sun Mon Tue Wed Thu Fri Sat 1 2 3 4 5 6 Network Group 7-9PM 7 8 9 10 11 12 Network 13 14 15 Group 10:30AM- 12:30PM 16 17 18 Persian Care- 19 20 21 22 giver Group 5-8PM 23 24 Walk & Talk 25 26 27 Moving from 28 29 30 1:30PM-3PM Guilt to Resilience 7-9PM Network Groups Thursday September 6th & October 4th, 7-9PM Wednesday, September 12th & October 10th, 10:30-12:30PM Room 203 in Capilano Mall, N. Van Guest speaker for part of the meeting on September 6th & 12th: What is Delirium and What Can be Done? Understand the prevalence of delirium; recognize symptoms of delirium in a loved one; and understand the management and treatment of delirium. Nicole Abbott is a Registered Psychiatric Nurse with the North Vancouver Older Adult Mental Health Team. She works as a case manager, facility consultant, and a mentor for student nurses. Regular meetings on October 4th and 10th. Walk & Talks Monday, September 24th & October 22nd 1:30-3PM John Lawson Park, W. Van Meet us in front of the public washrooms, rain or shine! Walking is really healthy for the body and mind! Take a break and join us for some uplifting conversation and beautiful fresh air. We walk at a pace that is comfortable for everyone who s joined us. Being a part of the groups has provided me with a sense of community. It is a way to feel a part of a village. It helped me to identify as a caregiver and realize that I m not alone. - B, Male Caregiver
September/October 2018 Page 4 For registration and information on all sessions, contact Karyn by email at karyn.davies@nscr.bc.ca or by phone at 604-982-3320. Persian Caregiver Meetings - Connect, share, and gain knowledge. ایجاد انگیزه تعادل رفتار A loved one s tendency to put you/others on a guilt trip Over-functioning/caring for your loved one at your expense Tuesday September 18 and October 16, from 5-8PM. Held in Room 203 at Capilano Mall. بیان چالش ها و شادی های یک کمک کننده و مراقب بررسی و تشخیص محدودیت ها و توانایی های شما آموزش راه های بکار بردن توانایی و مهارت های شما آموزش ترویج تندرستی و سالمتی شما استفاده از عقاید اطالعات و خرد جمعی Exhaustion and heavy emotional states that zap your life-force Feelings of isolation, overwhelm and helplessness You will learn how to: Understand the guilt cycle and what you can do to interrupt it Moving from Guilt to Resilience Rejuvenate yourself to a better feeling state on demand for more energy and clarity September 27 th from 7-9PM with Cheryl Brewster Room 203 in Capilano Mall, N. Vancouver An interactive workshop on rising up from: The harsh reality of facing a loved one s health decline Create a resiliency plan with practical strategies to help keep you on track Cheryl Brewster is one of Vancouver s most popular, passionate and respected authorities on how to use intuition and mindfulness to transform difficulty into opportunity. As a Transformational Speaker, Coach, and Life Celebrant, Cheryl coaches individuals and teams to find the hidden treasure within challenge. Wellness Corner: Advance Care Planning Resources My Voice Advance Care Planning Guide: Expressing My Wishes for Future Health Care Treatment. Fraser Health published this guide to help people learn why Advance Care Planning is important, and to give them the information and tools they need to create a plan. https://www.health.gov.bc.ca/library/publications/year/2013/ MyVoice-AdvanceCarePlanningGuide.pdf NIDUS: Personal Planning Resource Centre and Registry. A non-profit organization that helps people make and enter in to Representation Agreements. http://www.nidus.ca/ Speak Up: Advance Care Planning. This campaign is a part of a larger initiative Advance Care Planning in Canada, and seeks to help people to think about their wishes and values so they can create an Advance Care Plan that works for them. http://www.advancecareplanning.ca/what-is-advance-care-planning/
The Family Caregivers Grapevine Page 5 When it s Time to Access Respite Care By Cassandra Van Dyck Caring for a spouse, parent or friend can be an incredibly rich experience. Supporting your loved one s health journey is an immeasurable gift, and in some ways could bring you closer to together. Caregiving can also take a toll emotionally, physically, and financially. At some point on your journey, you will need support. At times this might look like a caregiver support group, a bit of help with cooking meals, or someone to help you with decision making. You may eventually find that you need more assistance, and are unable to take care of yourself or find the time to get all your jobs done. You might find you re unable to take care of yourself or that you just don t have the time you need to get all you need done, done. Accessing respite services can help you to take care of yourself, and in turn, better care for your loved one. Read on for respite options on the North Shore, and tips for speaking with your loved one about accessing respite services. Adult Day Programs Adult Day Programs provide therapeutic support, often for those living with chronic illness or cognitive impairments. Day Programs provide opportunities to socialize, and enjoy activities such as physical exercise, games, music, crafts, and entertainment. Some programs offer health maintenance activities, such as hygiene, medication monitoring, grooming, and nutrition support. North Shore programs have nursing services available, if required. Programs like these allow caregivers a break during the day so they can run errands, attend appointments, or just take some time for themselves to visit with friends and family or to relax. There is an added benefit of providing your loved one with an opportunity to connect with new people and experience new things, which could improve their emotional and physical well -being. Margaret Fulton Centre (VCH) (604) 904-3550/Karyn.lewis@vch.ca Health and Home Care Society of BC (604) 327-9525 West Vancouver Adult Day Centre (604) 922-2022/janet.spence@vch.ca MyParkgate Break (604) 983-6350/rmatthee@myparkgate.com In-Home Care In-home care provides an opportunity for your loved one to be supported in the comfort of their own home. A service like this may be especially useful if your care partner is resistant to the idea of accessing respite services, or has trouble leaving the house. Inhome care also gives caregivers a chance to respond to emails, or to go for a walk around the neighbourhood or catch up with friends and family on the phone. Taking short breaks during the day can make a big difference in a caregiver s well-being. Vancouver Coastal Health provides in-home assessments to determine eligibility for home-based support through the Home and Community Care Program. Home support hours, and more specifically, respite hours, are subsidized through VCH, and only certain
September/October 2018 Page 6 hours, are subsidized through VCH, and only certain types of tasks can be done; such as assistance with medication administration, etc. When you re becoming extremely tired or are feeling burnt out in your caring role, it is so important to ask for help by telling your case manager that you re fatigued. VCH Call (604) 986-7111 to get information on the Home Care hours or call Seniors One Stop at (604) 983-3303 for a list of private options. Overnight Care Care receivers can enter in to a residential care facility overnight and receive medical care and be part of therapeutic recreation activities. In North Vancouver, Cedarview Lodge is the only facility offering subsidized overnight respite care. Overnight respite care gives caregivers an opportunity to leave town for a vacation, have surgery or other medical care that would prevent them for providing their loved one with care, or to just have some time at home to relax and regroup. Care receivers are given an opportunity to be cared for by an interdisciplinary team, and possibly be introduced to new therapies or activities that can support them in their journeys. Tours are offered weekly and need to be booked in advance. Call (604) 904-6421 to book a tour. Private Overnight Respite is also available. Call Seniors One Stop at (604) 983-3303 for more information. How to Talk to Your Loved One You ve learned about the kind of respite services that are available and feel the urgent need for a break. You trust that your care partner will safely cared for, and will make the adjustment mostly okay. Now, how do you bring it up with your care partner? Talking to your spouse or parent about involving other people in their care, or perhaps providing a place for them to stay outside the home, can bring up all sorts of emotions. They might fear that you re hoping to involve (other) care professionals because they re too much of a burden on you, or worry that you re not doing well. Addressing and alleviating these fears can be very helpful. Before you speak to your loved one, do some research on what options are available to you, the cost, and when you might be able to access services. Look in to the sorts of activities or therapies that will be provided for your family member. The more information you have, the better you will be able to answer your loved one s questions or concerns. Take the time to think about why you re wanting to access respite care, and make a list if that s helpful for you. Are you feeling like you aren t able to take care of yourself the same way you formerly could, and you could use some time to exercise or prepare meals? Do you have doctor s appointments you ve been meaning to book? Is there a family member or friend that lives out of town who you ve been wanting to see? Or, are you feeling more tired than usual, and just need a little time off to rejuvenate? Communicating these feelings to your loved one will help them understand why you re hoping to access respite care. When your loved one voices their concerns, validate their emotions. For example, if they say they re scared or worried, let them know that you hear them, and you want to work with them to find care that feels good for both of you. Accessing overnight care may bring about a significant level of anxiety, both for the caregiver and for their loved one. Even though caregivers may desperately need the break, saying goodbye to your loved one for a week or more and relinquishing your daily routine can be very challenging. For your care partner, the thought of leaving their home and entering in to a care facility, if only temporarily, can be scary. Book a tour with your loved one, if possible, so you can both see the facility together and ask any questions you might have.
The Family Caregivers Grapevine Page 7 October 2018 Sun Mon Tue Wed Thu Fri Sat 1 2 3 4 Network Group 7-9PM 5 6 7 8 9 10 Network Group 10:30AM- 12:30PM 11 12 13 14 15 16 Persian Caregiver Group 5-8PM 17 18 19 20 21 22 Walk & Talk 1:30PM-3PM 23 24 25 26 27 28 29 30 31 Gratitude Corner: A Sense of Wonder Remember the quiet wonders. The world has more need for them than it has for warriors. - Charles de Lint Here is an invitation for this season: spend one day paying close attention to the little things in your day that make you smile. Look at the world with wonder in your eyes, and notice how you feel at the end of the day. Here are some things that I noticed this morning, to give you an idea of the sorts of things you can look for: another driver waving thank you when I slowed for him in the merge lane a warm smile from a co-worker my two year-old son, who only wants to walk barefoot in the summer A neighbour who offered up his fig tree for picking to whoever could come get them before they rotted By Cassandra Van Dyck
September/October 2018 Page 8 Impact Stories: From a Caregivers Point Of View By Cassandra Van Dyck Recently, we ve had the opportunity to sit down with two caregivers who shared their perspective on the value of NSCR s Caregiver Support Program, and how it s impacted their lives. If you ve never attended a session before, but you ve been considering it, these quotes may provide you with the insight you ve been wanting to take a leap and come to a Network Group or Walk & Talk and join our community. I d been looking for resources and hadn t found any. This group was a life saver. Realizing how many people were in similar situations provided me with a sense of community and gave me an outlet for what I was going through. Attending the groups has helped me to identify as a caregiver and made me realize I m not alone. They re calming. I ve learned about how the medical system works and what s available for my care partner. It s helped me to discover than I m not alone. I ve learned lots of relaxation techniques that I didn t think I d use, but I practice them all the time now and they ve really helped! The groups have provided me with an outlet to speak with people who understand, separate from my friends. I nourish myself through this group, and I ve learned to be a better listener. It s made me more compassionate. Karyn listens and digests what you re saying. It s amazing she can do that. She is so compassionate. I m not sure if I would have been able to continue supporting my loved one in the same way I had been if I hadn t connected with this program. For people considering attending, I d tell them to just give it a try. I ve seen a lot of people come to groups unsure if it was the right place for them, and it turned out that it was. Thank you so much to the two caregivers who spoke with us. If you would like to share your story with our caregiving community, we d love to hear from you! Email Cassandra at cassandra.vandyck@nscr.bc.ca NSCR Caregiver Support Program 201-935 Marine Drive, North Vancouver, BC V7P 1S3 We publish this bi-monthly newsletter on topics related to self-care and the caregiving role. Would you like to contribute to our next newsletter? We welcome interviews, artwork, writing, or guest articles. Please contact Cassandra: cassandra.vandyck@nscr.bc.ca or 604-982-3319