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A family caregiver decision guide : caregiving at home for someone with life-limiting illness Robinson, Carole A.; Pesut, Barbara; Bottorff, J. L. 2015

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A family caregiver decision guideCaregiving at home for someone  with life-limiting illnessA family caregiver decision guide 1Things change and this decision guide can be  used over and over. Here’s a place to keep track when you use the guide.AcknowledgemenTsThe team sincerely thanks all the families who participated in the research to create this guide. We would also like to thank Natalia Polchenko, Laura Bissell, and Janelle Zerr for their valuable contributions. Funding support for the guide was provided by Interior Health in partnership with the Institute for Healthy Living and Chronic Disease Prevention at The University of British Columbia Okanagan campus, as well as the British Columbia Cancer Foundation.ISBN: 978-0-88865-158-7© Robinson, C.A., Pesut, B., Bottorff, J.L. 2015This guide is the property of the                                            family.First completed on this date:                                   . Reviewed a second time on this date:                                   . Reviewed a third time on this date:                                   . Last completed on this date:                                  .(Some people find it helpful to use a different color each time they complete the guide.)suggesTed ciTATion  Robinson, C.A., Pesut, B., & Bottorff, J.L. (2015). A family caregiver decision guide. Kelowna,  BC: University of British Columbia.You may reproduce the Family Caregiver Decision Guide for your own use (not for sale or distribution without permission). For further information regarding this guide and training for its use contact Dr. Carole Robinson at carole.robinson@ubc.ca or by telephone at 250-807-9882.2This decision guide is for me, if:•	 My family member is living with a  life-limiting illness•	 I would like to plan for possible changes in needs for caregiving for my family member.Providing care for a family member is a process that often changes, sometimes quite suddenly. You may provide more care over time – alone, or with help from others. Careful planning allows you to care for your family member at home for as long as possible if you choose to do so. This guide will help you with this plan.You will be guided through four steps to help you with your decision planning:Not all parts of this guide will apply to you today. Focus on the parts that are important to you right now and finish the other parts that may be more relevant to you later on. It may be useful to complete this guide one step at a time or over several days. Revisit it when needs for caregiving change.Once you have completed this guide, talk it over with a health care provider to answer any questions or needs that may arise. Some people may want to complete the guide with a nurse or volunteer.Think about my caregiving situation  now.Think  about how my caregiving situation might  need to  change.Explore caregiving  options in my area.What are my best  options if the needs for caregiving change?1234A family caregiver decision guide 3How am i managing with... i do noT  need  Helpi could use some HelpHome maintenance: •	 Inside •	 OutsideCar maintenanceGrocery shoppingCookingTaking care of petsHome changes for safety and convenience (e.g., wheelchair ramps, grab bars in the bathroom etc.)Getting special equipment (e.g., walker, hospital bed, commode, wheelchair)Personal care of your loved one: •	 Bathing •	 Toileting •	 Dressing •	 Transferring in and out of bed •	 Managing incontinence of bowel and/or bladder•	 Wound careContinued on next page...1 Think about my caregiving situation now.How am i managing with... i do noT  need  Helpi could use some HelpHome maintenance: •	 Inside •	 OutsideCar maintenanceGrocery shoppingCookingTaking care of petsHome changes for safety and convenience (e.g., wheelchair ramps, grab bars in the bathroom etc.)Getting special equipment (e.g., walker, hospital bed, commode, wheelchair)Personal care of your loved one: •	 Bathing •	 Toileting •	 Dressing •	 Transferring in and out of bed •	 Managing incontinence of bowel and/or bladder•	 Wound care4i do noT  need  Helpi could use some HelpMy family member’s :•	 Pain control•	 Symptom management  (e.g., constipation, nausea and vomiting, breathlessness, confusion, trouble swallowing)•	 Medications (e.g., giving and keeping a record)•	 Transportation to and from healthcare appointmentsKnowing the signs and symptoms of a problem that requires medical attentionHelping my family member stay involved in meaningful activitiesHelping my family member stay active Continued from previous page...A family caregiver decision guide5How confident am I with… i Am  okAY  nowi could use some Helpi mAY need Help in fuTureUnderstanding the illness nowUnderstanding how the illness is likely to change over timeUnderstanding changes that might require medical attentionUnderstanding the goals of treatmentRecognizing when end of life is approachingTalking with my family member about the illness, how it may change, and plans for careUnderstanding my family member’s wishes for care:•	 Now •	 Towards end-of-life (e.g., goals of care, advance care plan, resuscitation orders)overall, how well am i managing caregiving now?Please, place an “X” on the line to show how well you are managing:Poorly Very wellwhat might be helpful to maintain my health so that i can provide the best care for my family member? i Am  doing  okAYi could  use more of THisFinancial support (e.g., income replacement, palliative benefits,	employee	assistance)Legal support (e.g., representation agreement for health care decision making, Power of Attorney, will)Emotional support (e.g., counselling)Religious or spiritual supportGetting some time for myselfBreaks from caregiving (respite):•	 In the home•	 Outside the homeDoing meaningful thingsKeeping activeOther (specify):                                  6How confident am I with… i Am  okAY  nowi could use some Helpi mAY need Help in fuTureUnderstanding the illness nowUnderstanding how the illness is likely to change over timeUnderstanding changes that might require medical attentionUnderstanding the goals of treatmentRecognizing when end of life is approachingTalking with my family member about the illness, how it may change, and plans for careUnderstanding my family member’s wishes for care:•	 Now •	 Towards end-of-life (e.g., goals of care, advance care plan, resuscitation orders)what might be helpful to maintain my health so that i can provide the best care for my family member? i Am  doing  okAYi could  use more of THisFinancial support (e.g., income replacement, palliative benefits,	employee	assistance)Legal support (e.g., representation agreement for health care decision making, Power of Attorney, will)Emotional support (e.g., counselling)Religious or spiritual supportGetting some time for myselfBreaks from caregiving (respite):•	 In the home•	 Outside the homeDoing meaningful thingsKeeping activeOther (specify):                                  2A family caregiver decision guide  7YesNowhat would tell me that i cannot keep  caregiving at home any longer? Tick all that apply.•	 Cannot keep up with important tasks •	 My own health is worsening•	 My family member’s pain becomes unmanageable at home•	 My family member’s symptoms are getting unmanageable at home•	 Exhaustion•	 Mixed emotions about living in the home after death •	 Other (specify):_____________________Think about how caregiving might need to change either now or in the future.Have you thought about the choices you might have to make?“It’s important to think about how your caregiving will change, because it will! Being a caregiver…you have to make choices…it’s challenging. And when needs change over time, it’s important to revisit your options. Planning in advance is a good idea. But sometimes you can’t predict what will happen. As things change it is important to ask yourself if you can maintain the care you want to give.”  (Family caregiver)8what things influence me when it comes to making choices about caregiving for my family member? Tick all that apply.•	 Beliefs about what is right•	 Desire to spend time with my family member•	 Lack of information about options, pros and cons•	 Views of other family members about the care that is needed •	 Feeling pressure from others•	 Available support from family or friends•	 Available support from healthcare providers•	 Lack of understanding about how the illness will go•	 Comfort and privacy of home•	 My family member’s wishes to stay at home•	 My family member’s wishes to be cared for by me•	 Promise for family member to stay at home until death•	 Other (specify):_________________________________________A family caregiver decision guide 9what things influence my family member when it comes to making choices about their care? Tick all that apply.•	 Beliefs about what is right •	 Desire to spend time with family•	 Lack of information about options, pros and cons•	 Feeling pressure from others•	 Available support from family or friends•	 Available support from healthcare providers•	 Lack of understanding about how the illness will go•	 Comfort and privacy of home•	 Desire to stay at home•	 Desire  to be cared for by me•	 Desire not to be a burden•	 Other (specify):_________________________________________•	 I am unclear about what is most important to themwho else is involved in caregiving for my family member?wHo is THis person (nAme)? wHAT role does THis person plAY in providing cAre?1.2.3.4.5.Are the following resources available in my area? Yes nodon’T knowFood and meal servicesPet care servicesHousekeeping servicesRecreation programsMedical equipment & supplies TransportationSupport	for	specific	conditions	(e.g.,	cancer)Programs to give you a break from caregivingVolunteers (e.g., hospice or community services)PhysiotherapyMedication management and delivery  (e.g., pharmacies)Personal care for my family member 10Are the following resources available in my area? Yes nodon’T knowFood and meal servicesPet care servicesHousekeeping servicesRecreation programsMedical equipment & supplies TransportationSupport	for	specific	conditions	(e.g.,	cancer)Programs to give you a break from caregivingVolunteers (e.g., hospice or community services)PhysiotherapyMedication management and delivery  (e.g., pharmacies)Personal care for my family member 3 explore caregiving options in my area. do i know what supports are available to me?A family caregiver decision guide11How do i feel about these caregiving options?Home wiTH increAsed resourcesI really dislike this optionI really like this option1 2 3 4 5My reasons:Home wiTH respiTe* AwAY from HomeI really dislike this optionI really like this option1 2 3 4 5My reasons:HeAlTH cAre fAciliTY**I really dislike this optionI really like this option1 2 3 4 5My reasons:Respite* is a short period of rest and relief for caregivers. Respite can be provided in the community through Adult Day Services or in a residential care facility on a short-term basis or in a hospice.Health Care Facility** could mean a hospital, long term care facility, palliative care facility, or hospice.4 what are my best options if the needs for caregiving change?12How does my family member feel about these caregiving options?Home wiTH increAsed resourcesReally dislikes this optionReally likes this option1 2 3 4 5Their reasons:Home wiTH respiTe* AwAY from HomeReally dislikes this optionReally likes this option1 2 3 4 5Their reasons:HeAlTH cAre fAciliTY**Really dislikes this optionReally likes this option1 2 3 4 5Their reasons:Considering everything I know... What is my best option if the needs for caregiving change and I can no longer keep caring at home with the resources available to me?• Home with increased resources• Home with respite away from home• Health care facility• Hospital• Care Home• Hospice• Other (specify):A family caregiver decision guide  13what do i need to do now so i can continue caregiving?Ask yourself.....what do i need to do now to prepare for future changes in caregiving?14what questions do i have for a family doctor or other health care professional (e.g., community or palliative nurse) about caring at home?what questions do i have  for a family doctor or other health care professional about alternative places of care (e.g., Health care facility)? A family caregiver decision guide  15contact informationwho can i contact for help if the needs for caregiving change?Family Doctor:Health Care Agencies (e.g., home care, community nursing, hospice or palliative care, Red Cross equipment loan services, Meals on Wheels):Family:Friends:Religious or Spiritual Leader:Lawyer or Notary:Banker:Other (specify):16Family Doctor:Health Care Agencies (e.g., home care, community nursing, hospice or palliative care, Red Cross equipment loan services, Meals on Wheels):Family:Friends:Religious or Spiritual Leader:Lawyer or Notary:Banker:Other (specify):notesA family caregiver decision guide  17AdvAnce cAre plAnningSpeak Up www.advancecareplanning.ca   fAmilY cAregiver resourcesAging Parents Canada www.agingparentscanada.caCanadian Caregiver Coalition www.ccc-ccan.ca•	 Select the ‘Resources’ tabCaregiving.com www.caregiving.comThe Family Caregiver www.thefamilycaregiver.com 1-800-209-4810Canadian Mental Health Association www.cmha.caHospice/pAlliATive cAreAmerican College of Physicians Home Care Guide for Advanced Cancer  www.acponline.org/patients_families/end_of_life_issues/•	 US site that has valuable resources for family, friends and hospice workers when caring for individuals with advanced cancer at homeCanadian Virtual Hospice www.virtualhospice.caCanadian Hospice Palliative Care Association www.chpca.net•	 Select ‘Family Caregiver’ tab1-800-668-2785Family Caregiving for People at the End of Life www.eolcaregiver.com•	 There is a great resource link on the home pageFamily Hospice Care www.legacies.caVictoria Hospice www.victoriahospice.org•	 Select the ‘How we can help you’ tabresources18governmenT AssisTAnceCanada	Benefits www.canadabenefits.gc.ca•	 Go to the middle section under ‘Life Events’ then ‘Dealing with death’Health Canada – Palliative and End-of-Life Care  www.hc-sc.gc.ca/hcs-sss/palliat/index-eng.phpEmployment	Insurance	(EI)	Compassionate	Care	Benefits www.servicecanada.gc.ca/eng/ei/types/compassionate_care.shtml1-800-622-623grief And BereAvemenT supporTAfterGiving - When Caregiving Ends, Beginning New www.aftergiving.comBereavement Self Help Resources www.bereavement.caCompassion Books www.compassionbooks.com 1-828-675-5909 GriefNet www.griefnet.orgJourney of Hearts www.journeyofhearts.orgKidsaid– 2 Kids, 4 Kids, by Kids www.kidsaid.cominformATion on specific illnessesALS Society of Canada www.als.ca 1-800-267-4257Alzheimer Society of Canada www.alzheimer.ca 1-800-616-8816Canadian AIDS Society www.cdnaids.ca 1-800-499-1986Canadian Cancer Society www.cancer.ca 1-888-939-3333Cancerview www.cancerview.ca •	 Link to ‘Resources for Patients and Families’ on the home page•	 Excellent Caregiver video link in ‘The Truth of It’ series1-877-360-1665Cancer Chat Canada www.cancerchatcanada.ca 1-877-547-3777 ext. 645234Canadian Diabetes Association www.diabetes.caCanadian Lung Association www.lung.ca/home-accueil_e.php•	 Education and resource materials under ‘Lung Health’ tabHeart and Stroke Foundation of Canada www.heartandstroke.caKidney Foundation of Canada www.kidney.ca 1-800-361-7494Leukemia and Lymphoma Society of Canada www.LLS.org/canada 1-800-955-4572National Cancer Institute www.cancer.gov •	 US site, but provides information internationally as well. 1-800-422-6237Mon-Fri 8am-8pm ET19for more information regarding this guide: Contact Dr. Carole Robinson at carole.robinson@ubc.ca  or by telephone at 250-807-9882

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