Caregiver Sharing Session Report March 11 & 12, 2013 Fisher River Cree Nation, Manitoba

Author: The Saint Elizabeth First Nations, Inuit, and Métis Program

In partnership with Fisher River Health Centre

Table of Contents

Acknowledgements ...... 4 Participants ...... 4 Background ...... 5 The National First Nations Caregiver Education and Support Project ...... 5 Introduction ...... 5 Fisher River Cree Nation ...... 6 The Fisher River Cree Nation Caregiver Sharing Session ...... 6 Participant Introduction ...... 7 The Importance of Self-Care ...... 7 Findings ...... 8 Community Perceptions of Caregiving ...... 8 The Current Caregiver Education and Support Program: Needs, Challenges and Opportunities ...... 9 Identification of Caregiver Needs ...... 9 Challenges and Needs Identified for the Caregiver Education and Support Program ...... 12 Opportunities for a Caregiver Education and Support Program ...... 14 Conclusion ...... 16 Appendices ...... 17

Acknowledgements

With deep gratitude we acknowledge Elder Elsie Crate who played an integral part in creating an atmosphere that was supportive, respectful and inspiring. We thank and appreciate all the participants for trusting us with their experiences and knowledge and also sharing the vision for the community’s Caregiver Education and Support Program.

Special recognition is given to Simon Murdoch who assisted in drawing the visual representation of the vision for the community’s Caregiver Education and Support Program within the Challenges and Needs Identified for the Caregiver Education and Support Program section of this report.

Acknowledgment and recognition is also given to Wanda Joy Murdock, Community Wellness Worker, who coordinated the sharing session at the community level.

Participants

Carole Crate Donna Lynn Thaddeus Dion McKay Elsie Crate Jeanette Amos Simon Murdock Susan Murdock Wanda Joy Murdock

The participants represented various experiences of caregiving as follows:

• Home and Community Care Staff • Provided Palliative Care to Grandfather • Retired Nurse • Community members • Community Elder • Band Councillor

Background

The National First Nations Caregiver Education and Support Project

The Saint Elizabeth First Nations, Inuit and Metis Program is working in partnership with First Nation communities across Canada to better understand the education and support needs of community care givers in order to build a National First Nations Caregiver Education and Support Program.

Community caregivers are those individuals who provide care for family members such as elders; people with disabilities; and people who are receiving palliative care. Typically these caregivers are informal (not part of the health care team) yet they play a crucial role in keeping community members in their home communities.

Currently there is a lack of support and education opportunities and programs for community caregivers. The Saint Elizabeth First Nations, Inuit and Métis (FNIM) Program has received funding from corporate donors through the Saint Elizabeth Foundation to develop a National First Nations Caregiver Education and Support Program.

In order to build a program that addresses the needs of caregivers three caregiver sharing sessions will be held in select First Nation communities across the country, of which Fisher River Cree Nation is one of the communities. The Caregiver Sharing Session involved both interactive and hands-on activities and discussions in a fun and safe environment with time taken to celebrate and honour the important role of each community caregiver participant. Please refer to the Caregiver Sharing Session agenda for further details on activities and topics.

The information gathered during the sharing session, together with information gathered from a survey of health care providers and an environmental scan, will inform the development of a training program for community health care providers (those employed to provide health care services such as Nurses, Health Care Aides, Homemakers etc.). The program will equip community-based health care providers with the knowledge and support they need to confidently provide education and supports to caregivers within their own community.

Saint Elizabeth is leading this project with the same values that have guided and enriched their work over the past decade, including placing particular importance on meaningful involvement of First Nation communities. For further information on the Saint Elizabeth First Nations, Inuit and Métis Program visit www.atyourside.ca .

Introduction

This report represents the findings of the caregiver sharing session held in Fisher River Cree Nation, Manitoba on March 11 & 12, 2013. An overview of the purpose of the session and a description of the types of activities participants engaged in during the one and a half day session is also provided.

Fisher River Cree Nation

Fisher River Cree Nation is an an independent Cree First Nation community that is a rural community accessible by road. The community is located located approximately 193 km north of Manitoba's capital city, Winnipeg. Its registered population in March 2013 is 1851.

The Fisher River Cree Nation Caregiver Sharing Session

The purpose of the Fisher River Caregiver Sharing Session was to involve community caregivers (health care providers and family/community members) in sharing their knowledge through stories and experiences. The session was delivered with the firm belief that the knowledge and expertise was already in the room.

Eight participants from the community gathered together for this sharing session. Participants quickly were able to trust in the process and were immediately willing to share their knowledge on caregiver education and supports within their community.

The sharing session included activities that were both interactive and fun to help keep participants engaged throughout the day and half. The activities helped the participants through the process of mapping out the Caregiver Education and Support Program in their community, envisioning their own community program.

The sharing session was held at the Fisher River United Church Hall.

Participant Introduction

The participants shared their expectations for the day and a half session during the round-table of introductions as well as the shared their current and past experiences in caregiving.

The Importance of Self-Care

“I learned that I need to take care of myself before I can take care of someone else.” Sharing Session Participant

On day one of the sharing session a short presentation on stress and burn-out was delivered with content on the signs and symptoms and strategies to decrease stress and prevent burn-out. Through-out the day and a half session interactive group activities and discussions were facilitated emphasizing self-care. The facilitators engaged the participants through various self-care activities such participating in mindfulness practices 7

(breathing techniques, guided imagery) and demonstrating the use of Pilates bands, stress balls (tennis ball), laughing (games) and journaling that the participants can include in their daily lives to decrease stress and prevent burn-out.

It is recognized that the first and foremost goal of any caregiver is to take care of oneself so that they can continue to take care of others. In addition to the self-care education and demonstrations and interactivities through-out the sharing session each participant was honoured for their role and presented with a care package. The care package contained items following the theme of self-care and are as follows:

• Pink Stress Ball (tennis ball) • Pilates band • Mindfulness DVD (donated by Klinic Community Health Centre, Winnipeg, MB) • Care Journal • Epson Salt/Bath Salt • Louffa • Hand/Body Cream • Gum • Pack of Tissue • Small Package of Tea • Gum • Chap Stick

Findings

Community Perceptions of Caregiving

The participants shared their perceptions of caregiving and the roles through discussion. Participants expressed that Caregivers are anyone who provides care to another i.e. chop wood, self-care activities like assisting with baths and dressing, cleaning the house, doing laundry. There are those who are paid (Home and Community Care staff members etc.) and those that are not (family caregivers etc.).

“We all are caregivers here in some way!” Sharing Session Participant

The caregiver roles and responsibilities identified by the caregiver sharing session participants included the following:

• Helpers & Caregivers • Personal Care/grooming 8

• Pet Therapy • Visiting/listening • Phone calls • Laugh • Shopping • Coordinating activities • Cooking • Transportation • Cleaning • Encourage exercise • Physical Care • Acknowledge traditional caregivers • Healers/medicine people • Ceremonies/prayer • Looking after emotional and spiritual needs • Being there • Being present • Take to church

The Current Caregiver Education and Support Program: Needs, Challenges and Opportunities

Identification of Caregiver Needs

The participants shared the types of supports needed by caregivers grouped into the 4 aspects of self; Physical (Body); Mental (Mind); Emotional (Heart) and Spiritual (Soul). Participants stated these support needs on flip chart as indicated below:

Physical Support: • Strength • Exercise • Proper lifting/transfer • Techniques • Walking • Rest • Diet

Mental Support: • Be Sane • Open minded • Reading • Watch the bears • Puzzles • Suduko & Crossword Puzzles • Talk to someone-get something off your mind • Read newspaper • Exercise mindfulness practices • Listen to music • Take a bath/go for walk • Puzzles • Crafts • Writing things down • Making a list- to do list • Go in the bush • Go for drive-change of scenery • Playing Board games o Scrabble o Monopoly o Card games

Emotional Support: • Support Groups- need these • Someone to talk to- trust • Share with an Elder • Healing Center • AA (Alcoholics Anonymous) meetings • Team Debriefs • Being mindful of the situation • Someone you trust to share feelings • Support to grieve all types of loss e.g. death, separation, someone you love going to prison • Respect that someone might want to be left alone • Recognize and support loved ones who may be angry • Support from other family members, can be too much responsibility on one family member • More family involvement • How to deal with depression 10

Spiritual Support: • “Life is not easy”- hold out our hand to those in trouble • Believe in yourself • Reading Bible/listen to prayers • Pray together • Share teachings o Power of Prayer o Blessing home o Cleansing Ceremonies • Being on land • Picking medicines • “Before we can help others need to do stuff for ourselves” • Follow your heart • Going to Church/Ceremonies o Baptism (Child & Adult), Communion (drinking wine) • Going to sweat lodge • Sundance/fast/pray • Women’s 23 hour fast • Moon lodge Teaching • Women’s Teachings- moon time, water • Drum Groups/singing • Non-judgmental, open mind to others beliefs and values • “Building Bridges” (A community Program offered by the Fisher River United Church) • Respect everyone’s beliefs. Don’t force your beliefs • Elders Teachings • Open up spiritual self • Be happy for others • Sense of humour-laughter is healing

On the afternoon of the second day, the participants developed a visual representation of the vision of the Caregiver Education and Support Program for their community.

This visual representation of the Caregiver Education and Support Program is below and represents the needs, challenges and opportunities.

Challenges and Needs Identified for the Caregiver Education and Support Program

Accessibility Pictured on the representation of the vision of the program are wheelchair ramps on the houses. There are homes that need wheelchair ramps within the community.

Meals on Wheels Participants identified the need for a meals on wheels service within the program.

Recreation/Gathering Facilities Participants identified the need for community facilities such as an Elder’s Centre and a Recreation Centre. Loneliness for those being cared for is an issue. Participants expressed that Elder’s and those being cared for don’t currently have a public area that they can access to socialize with others. Participants envisioned a central facility that included activities such as crafts, sewing and beading as well as bingo.

Access and Transportation Issues The community is accessible by road. Participants expressed that the caregivers and those receiving care may need supports for transportation within the community such as going to the store, going to community events (community gatherings, workshops, suppers etc.)

Participants spoke of the need for a bus seating 45 community members for various uses within the community for opportunities to provide shopping trips to larger urban centres like Selkirk.

Supports Participants identified the need for support groups for family caregivers within the community.

There is a need for home supports such as chopping wood and clearing the snow from the doorways and steps.

Participants felt that further opportunities where needed to come together to not only share information but also as a way to support one another in the caregiver role when needed.

Palliative Care A challenge that emerged repeatedly throughout the two-day session is that of the lack of funding and resources for in-community palliative care. Although there is no dedicated palliative care funding and there is very limited resources for in-community palliative care, people are deciding to go home to die. The community does support palliative patients in their homes.

One of the major challenges in supporting client’s in-community for palliative care is providing pain relief often with inadequate pain relief drugs relating to insufficient training resources for staff. The result is inadequate pain relief measures for palliative clients.

Another challenge in supporting community member’s in-community for palliative care is the lack of access to education on how to provide the care (mouth care, transferring, bed bath etc.).

A participant also shared that family members need to be educated on the importance of planning for an expected death. “When someone is palliative and they die without a living will then family conflicts happen…fighting over who is going to get the house and other belongings. Most of these types of conflicts can be avoided if plans were in place beforehand.”

Double duty Caregiving A challenge that was identified is the provision of double duty caregiving expressed by a sharing session participant. “It’s hard to work all day caring for others, and then have to go home to do more caring!”

Caregiver Education & Training Participants identified the following education and training needs for caregivers:

• Client history- beliefs/values

• Grieving Process • Palliative Care • Cancer Care • Safety of Caregiver o Safety Plans o Your rights • Mouth Care • Turning/personal care • Signs and symptoms of illness & effects i.e. Stroke- change in behavior • Dementia • Depression • How to talk to someone losing their independence-getting professional help • Respect client choices-living at risk • Support to make tough decisions like putting loved one in a home • Living wills- can be difficult conversation

Opportunities for a Caregiver Education and Support Program

Supports Currently the Personal Care Home provides up to six weeks of respite care when community members need respite when caring for family members who are palliative.

Participants identified that those community members receiving social assistance, Employment Insurance and summer students employed during the summer are potential sources of supports to caregivers and those community members needed certain services. Some of the services identified are to provide support services such as chopping wood, cutting the grass as well as coordinating recreation and fundraising activities within the community.

LifeLine Program The Home and Community Care Program provides a Victoria LifeLine Program to community members who have been assessed and are a part of the homecare programming. Community members utilizing the program wear an alert device at all times and when needed they activate an alarm by pressing a button and an alarm is sent to the Victoria LifeLine Response Centre (located in Montreal). The Response Centre responds by contacting those listed on the contact list for the individual client. If the Response Centre cannot contact anyone on the contact list than the call goes to the local ambulance service from a neighboring community in Pequis, MB at 204-645- 2000. The service is for after hours, statutory holidays and weekends. During regular Home and Community Care Program hours those on the clients contact list are contacted. The community contact will go to the home and assess the situation and arrange for appropriate help if needed.

Communication Participants felt that opportunities to bring together people to discuss issues and needs like this Caregiver Sharing Session are what are needed within the community and among community members.

“It was the traditional way to come together to talk about things! This is what we need more opportunities to do this sharing!” Sharing Session Participant

Recreation/Gathering Facilities Participants felt that there were opportunities within the community to build and support an Elder’s Centre and a Recreation Centre by community fundraising events. The fundraising opportunities identified is bingo with big prizes of which the proceeds can cycle back to the community to support the purchase of a bus with forty five seating capacity as well as supplies and materials for the centre’s social activities.

Participants also identified opportunities for human resources supports from those receiving Social Assistance and summer employment students to assist in coordinating and supporting recreation activities for community members.

Supports for Self-Care Participants felt and voiced their appreciation for the opportunity to participate in self-care activities such as the sharing session. One participant expressed “I feel so much better then when I first came here. Things were happening at home.”

Community Awareness of Home and Community Care Program and Staff Role Participants expressed there was a need for recognition for the role of the home and community care program in the community.

“We hear comments from our clients, families and community members how we don’t do our work. In the mean time we work hard!” Sharing Session Participant

Education and awareness needed include what services are provided by the program and the type of services provided by the various positions within the program such as the Health Care Aides, Home and Community Nurses and Homemakers.

“It’s important to understand the work that these ladies (Home and Community Care Program staff) do. Thank you to all of you for all the work you do!” Sharing Session Participant

Participants also acknowledged that the community needs to understand and recognize the Home and Community Care Program staff members are very dedicated and committed individuals. A sharing session participant shared that another participant “… walks, bikes, hitch hikes and catches rides to get to her clients homes for work. She is very dedicated and committed to her work!”

Participants also spoke about the need for community awareness that the Home and Community Care Program was not just for Elders and is a service for community members who needed long term care with conditions such as Muscular Sclerosis (MS) and special needs as well as those needing short term care such as those with injuries from car accidents and falls.

Participants felt that providing information in a pamphlet is nice but they are not always read by community members. Other ideas shared included information being shared over the newly established community radio station.

The community homemaker and Health Care Aide funding is combined into an integrated fund and participants felt this was a real benefit to the program.

Mental Health Services and Crisis Team Participants reported that recently twenty five community members participated in a two day Training/Workshop on Crisis Management. They also identified that for the most part, families are very supportive and currently there are support groups within the community such as Alanon and Alcoholics Anonymous.

Conclusion

The roundtable of introductions of the participants at the beginning of the caregiver sharing session identified primarily Home and Community Care Program staff with a representative from the community leadership, health centre and community Elder. The participants are a dedicated group of eight individuals with past and present caregiving experiences both informal and formal. The participants shared their knowledge and

experiences around the needs, challenges and opportunities of caregiving and shared their vision of their Caregiver Education and Support Program.

The results from the discussions identified the need for wheelchair ramps, meals on wheels program, public facilities for recreation and socializing for community elders and those receiving care. Other support needs identified are a caregiver support group and supportive services such as chopping wood, clearing snow from walkways etc.

The participants identified the need and importance of partnership and collaboration with organizations to meet the needs around education. The education opportunities and needs are: personal care (i.e. turning, transferring, oral care); specialized education and training on providing care to those with specific illnesses and conditions (i.e. dementia, depression, cancer); personal safety and how to support and discuss difficult topics such as living wills and admitting a loved one into a personal care home.

Participants identified several opportunities such as a recent growth in the number of trained crisis team members, building a recreation centre and supporting recreational and social activities with funds from community fundraising events such as bingo. Participants also identified potential human resources (i.e. social assistance, summer students) for supporting recreational and fundraising activities and support services.

Participants also spoke about the need for community awareness and appreciation of the Home and Community Care Program, the services it provides as well as the recognition of the importance of the staff role within the community and those they provide care services to.

The sharing session brought together people with the same role and interest to discuss and envision their community’s Caregiver Education and Support Program. The caregiver sharing session is an example of how gathering people together to discuss a common issue can mobilize communities and lead to positive changes.

After the sharing session, a meeting was held between Cindy Hart, Health Director and the Saint Elizabeth sharing session facilitators (Melissa Spence and Tracy Scott) to discuss the session findings and opportunities for strengthening the education and supports for community caregivers in Fisher River Cree Nation.

Appendices

• Fisher River Cree Nation Caregiver Sharing Session Agenda

FIRST NATION CAREGIVER SHARING SESSION FISHER RIVER CREE NATION, MB MARCH 11 & 12, 2013 AGENDA DAY 1 Time Agenda Activities 11:30am -12:00 pm Meet and Greet (Name Tag Station Activity)

12:00-1:00 pm Lunch (Provided)

1:00-1:10 pm Welcome Remarks

• Welcoming remarks • Introduce Self-Care as an over-arching theme for the time together.

*Opportunity for Community Leadership opportunity to address the community participants

1:10-1:25 pm Elder opening

1:25–1:40 pm Facilitators and Saint Elizabeth First Nation, Inuit and Métis Program Introduction

*Housekeeping 1:40-1:50 pm Purpose of the Sharing Session

• Introduction to the First Nations Caregiver Education and Support Program Project • Participant role

1:50- 2:20 pm Participant Introduction (Round-Table)

2:20-2:35 pm Body Break

2:35 - 2:50 pm Sharing Session Expectations

2:50- 3:25 pm Community Perceptions of Caregiving

3:25- 3:35 pm Celebrating the Caregiver

3:35 - 3:50 pm The importance of Self-Care

3:50- 4:15 pm Reflections and Wrap Up

4:15-4:30 pm Elder final thoughts for the day and closing

FIRST NATION CAREGIVER SHARING SESSION FISHER RIVER CREE NATION, MB MARCH 11 & 12, 2013 AGENDA DAY 2 Time Agenda Activities 9:00-10:00 am Breakfast (Provided)

10:00-10:30 am Welcome back and Elder Opening • Participant Check-in

10:30-11:00 am Celebrating Caregiving (Group Activity)

11:00-11:10 am Body Break- Coffee Break

11:10- 11:25 Energizer 11:25 am-12:15 pm Caregiver Education, Training and Supports: Identification of Needs, Gaps and Solutions (Group Activity)

12:15-1:15 pm Lunch (Provided)

1:15- 1:30 pm Caregiver Education, Training and Supports: Identification of Needs, Gaps and Solutions Cont. (Group Activity)

1:30-2:30 pm Building a Community Caregiver Education and Support Program

2:30-2:45 pm Body Break- Coffee Break

2:45-3:15 pm Building a Community Caregiver Education and Support Program cont.

3:15-3:25 pm Energizer

3:25–4:05 pm Reflections and Wrap-up

4:05-4:15 pm Evaluations and Next Steps

4:15–4:30 pm Elder Final Thoughts for the Sharing Session and Closing