May/June 2018

Family Caregivers’ Grapevine NSCR Caregiver Support Program

renew strength, gain knowledge A New Way to Think about Palliative Care

By Cassandra Van Dyck

“Palliative care is not about the end of life, it is about having quality of life for the patient and their family, and making the most of whatever time there is.” – Jane Jordan, Vancouver Coastal Health’s Every

Day Counts Program

What do you think and feel when you hear the term “palliative care?” If you think about death and feel afraid, you are not alone. Many people equate palliative care with the end of a life, and although they are not entirely wrong, resting on that picture does not capture the whole image of what it means to access palliative services.

The cause for fear is not unfounded. The term “palliative” has historically been used interchangeably with “end-of-life care.” It can sound scary, indeed. If your loved one has just been diagnosed with a life-limiting illness, it’s understandable that receiving an in-vitation to access “end-of-life care” could be met with hesitation. You’ve only just found out that your care partner has a serious illness, so what’s to say that you’re ready to plan for the end of their life? Rethinking the term “palliative” is a helpful first step towards open-ing the door to valuable services.

The World Health Organization defines palliative care as “an approach that improves the quality of life of pa-tients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and oth-er problems, physical, psychosocial and spiritual.“ Life threatening illnesses can include cancer, diabetes, lung disease, multiple sclerosis, HIV/Aids, etc. The list is long, and although they are serious diseases, a diagnosis does

not necessarily mean that the end of life is just around the corner. Your loved one may live for many years with a life-limiting illness. Palliative care provides services that increase their quality of life for however long they may live.

Vancouver Coastal Health’s Every Day Counts (EDC) pro-gram provides palliative services to patients and their families on the North Shore. They offer information, wellness activities, and counselling support. “[We] help people navigate through the medical system and reas-sure them that services or support is available and they show them how to access it,” says Jane Jordan, coordi-nator of Every Day Counts. “Individuals and family can access our services at any time. Our hope is that by con-necting with us early the activities we offer can help en-rich a person’s life and provide a support system when-ever they may need it.”

Every Day Counts offers information sessions every Monday that can help to dispel some of the myths and assumptions about palliative care. “The Monday Info Sessions often provide relief for patient and family as they do meet other people who have very similar situa-tions of questions and people are quick to realize they are not alone,” says Jordan. EDC offers drop-in classes throughout the month which are free and available to

May/June 2018 Page 2

anyone who is registered with the program, such as yo-ga and tai chi. such as yoga and tai chi. “Our Thursday morning Relaxation Group has been in existence for more than 25 years and our Music Therapist teaches participants how to use music and meditation as a source of comfort from pain and symptoms, grief and anxiety,” says Jordan. The groups bring together people from different backgrounds. “Some are still in treat-ment, others could be a spouse who needs to look after themselves, and others have had a loss and are partici-pating to support their bereavement.” EDC also offers a monthly event called Beautiful You, which provides makeovers for women. “But it’s a lot more than that,” says Jordan. “Many of our participants struggle with their appearance due to illnesses (hair loss, weight loss, weight gain, etc.) and wearing makeup or fixing their hair is a real challenge. At Beautiful You, we have a pro-fessional makeup artist, a hair/wig specialist, and a pro-fessional photographer. Participants learn how to apply makeup to enhance their appearance, the hair specialist will fix their hair, or offer to try a wig or hairpiece. The photographer takes a portrait of them which the ladies will receive in the mail as a keepsake.” Such programs are invaluable to participants and their families. “The results are amazing – so many smiling faces.” Register-ing with Every Day Counts does not mean clients have to actively participate in programming right away if they do not wish to. Nurses will check in on a monthly basis by phone to see how the patient is doing. Options will be presented, but it is always up to the individual and their family to decide what they need.

Accessing and registering for palliative care services is a way to expand your network of care providers, even if you do not use the available services right away (or ev-er). Knowing they’re there and being able to use thera-peutic services if you want or need to is a fantastic way to build a support network both for you as a caregiver and for your loved one. If you’re unsure whether your care partner qualifies for palliative care, talk to your doctor. If you or your loved one are overcome with fear about what it means to access palliative services, re-member to be kind to yourselves. Talking about end-of-life care is not easy. It’s important to connect with your care partner, and to ask all the questions you need so you feel supported on your journey. Attending an infor-mation session like the ones Every Day Counts hosts or making an appointment to speak with someone from a

palliative care program in your local area can help to alleviate a lot of concerns and questions you might have.

If you think Every Day Counts would be a good fit for your loved one, talk to your family doctor about making a referral. For more information on the program and to learn about upcoming events and information sessions, email everydaycounts@vch.ca, call 604-363-0961, or

visit https://www.northshorehospicepalliative.com/our-services/every-day-counts-program/

___________________________________________ Creating Healthy Boundaries Friday, May 4th 1-3PM Room 203 in Capilano Mall with Jodie MacDonald

Caregivers will learn about different patterns of relating

through a discussion of boundaries, offering them insight

into areas of vulnerability and conflict in their relation-

ships. Using breathwork and awareness, caregivers will

practice establishing a boundary as a container for their

own energy, helping them to more easily identify their

own needs and separate them from the needs of others,

making caregiving more sustainable. Somatic awareness

will help caregivers develop resources to take care of

themselves during times of upset, overwhelm or conflict.

Jodie McDonald is the Executive Director of the Cowichan

Family Caregivers Support Society and a consultant with

Family Caregivers of BC. Trained as a social worker, she is

also an Integrative Body Psychotherapist in private prac-

tice.

3rd Annual Caregiver Expo Saturday, May 5th 9AM-3PM

Delbrook Centre, 851 Queens Road

Join us learn about local services, enter to win prizes,

and hear talks on a variety of topics to inspire, inform,

and celebrate YOU!

Watch for a presentation schedule on our website:

http://www.nscr.bc.ca/information/caregiver.html

The Family Caregivers’ Grapevine Page 3

Network Groups Thursday, May 3rd & June 7th, 7-9PM

Wednesday, May 9th & June 13th, 10:30AM-12:30PM Room 203 in Capilano Mall

May 3rd: From the frontlines of caregiving: A former

caregiver shares her story

Janet Dunnett spent a decade deeply involved in the care for her parents Fred and Betty, both dwindling separately through their drawn out and fragile old age with a growing list of chronic conditions all needing care. Once front line caregiving was over, Janet wrote a book about to capture both the challenges and joys of her caregiver experience. Her new focus is advocacy on behalf of caregivers, that they get the recognition, respect and support they deserve.

May 9th & June 7th: Understanding the discharge pro-

cess and post-hospitalization care

Janice Hamel with Home Care Assistance is a social

worker with over 20 years’ experience supporting cli-

ents and their family members with care needs, and is

well-versed working with a variety of mental health

issues, dementia care, end of life, and bereavement.

One of the leading causes of hospital readmission or

slow post-hospitalization recovery is the lack of proper

discharge planning and support immediately following

discharge. Gain an overview of: the discharge process

and the key players, resources and tools associated

with the transition from hospital to home.

Walk & Talks Monday, May 28th & June 25th, 1:30-3PM

Gentle exercise is a phenomenal way to boost your mood! Join us to talk, connect, and breathe the fresh ocean air. We walk at a pace that is comfortable for everyone. Meet us in front of the washrooms at John Lawson Park, rain or shine!

May 2018 Sun Mon Tue Wed Thu Fri Sat

1 2 3 Network

Group 7-9PM

4 Creating

Healthy Bound-

aries 1-3PM

5 3rd Annual

Caregiver Expo

9AM-3PM

6 7 8 9 Network

Group 10:30AM

-12:30PM

10 11 12

13 14 15 16 Persian

Caregiver

Group

17 18 19

20 21 22 23 24 25 26

27 28 Walk & Talk

1:30-3PM

29 30 31

May/June 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.

Caregiver Mini Holiday Saturday June 2nd 10:30AM-3PM

Mollie Nye House

Coping with changes in a loved one’s health takes ener-

gy and can take a toll on your own emotional, mental

and physical health.

Take a well-deserved break and join us for a day of RE-

JUVENATION, self-care, laughter, and connection. Our

time together will include lunch and a creative activity.

Persian Caregiver Meeting May 16th 5-7PM

Room 203 in Capilano Mall, N. Van

We invite those who are a support person to elders, rel-

atives, spouses, friends and community members. The

meetings are an opportunity to connect with others

who also seek to improve their own health and well-

being, and to gain skills that will help you better manage

the caregiving journey.

The group is facilitated in Farsi by Katayoun Shirzad, fea-

turing a variety of topics such as managing boundaries,

stress relief techniques, and communicating with family

members.

Wellness Corner: Palliative Care Resources Books:

The Conversation: A Revolutionary Plan for End-Of-Life Care, By Angelo E. Volandes, MD

Being Mortal, By Atul Gawande

Movies:

The Bucket List

Marvin's Room

Organizations:

BC Centre for Palliative Care http://www.bc-cpc.ca/cpc/

Every Day Counts http://www.northshorehospice.ca/our-services/every-day-counts-program/

Paul Sugar Palliative Care Foundation https://www.paulsugarfoundation.com/

The Family Caregivers’ Grapevine Page 5

“I Am a Caregiver”: Stages of Caregiving

By Cassandra Van Dyck

“Owning our story can be hard but not nearly as difficult

as spending our lives running from it. Embracing our vul-

nerabilities is risky but not nearly as dangerous as giving

up on love and belonging and joy—the experiences that

make us the most vulnerable. Only when we are brave

enough to explore the darkness will we discover the infi-

nite power of our light.” - Brené Brown

I have a very dear friend who cared for his mother in her

final months of life, then his father while he suffered from

chronic illness, and finally his grandmother, all while going

to school and working full-time. We came in to one an-

other’s worlds after the three people he’d cared for had

passed, and he was adjusting to life free of the responsibil-

ity and weight that he’d experienced for so long. Those

years were not easy on him. Although he had been sur-

rounded by some incredible friends, he was largely alone

on his journey. It wasn’t until years later that I came to

associate the term “caregiver” with my friend, and I’m not

sure if he has ever connected it with himself. He was, how-

ever, a caregiver in every sense of the word. He provided

emotional, physical and financial support to all three of his

family members while they battled illnesses, until they

passed away. I wonder now what kinds of supports might

have opened up to him if he had called himself a caregiver.

I wonder if he would have met other young caregivers who

may have provided him with emotional support, or if de-

fining himself as a caregiver might have helped him link

with community services.

When did you start identifying with the “caregiver” role?

Do you now, as you read this? North Shore Community

Resources’ Caregiver Support program defines a family

caregiver as anyone who provides practical or emotional

assistance to a family member or friend who is living with

some form of health condition, memory loss or cognitive

impairment. There are lots of stages of the caregiving jour-

ney, and folks who access our services are all over the

map. Some join us because their loved one has just been

diagnosed with a serious illness and they understand that

they’ll be providing care for them, and will need connec-

tion and resources. Others have been caring for their fami-

ly member for years and are needing some more support

in the present moment with emotional sustenance, infor-

mation about local services, and practical tips for manag-

ing their loved one’s challenges.

Some people are eased in to their caregiving journey. Their

loved one might need some extra help with tasks such as

transportation to doctor’s appointments, or assistance

with cooking meals. This could only take an hour or two a

week, and the person caring for their spouse or family

member might not feel that they’re a caregiver. Perhaps

though, this person’s role evolves over time, demanding

more of their time and putting a strain on their mental

load. Their care partner’s health might decline, resulting in

more doctor’s appointments, more help needed around

the house with chores, and greater support required for

personal care. This progression can happen quickly, over a

number of weeks or months, or slowly, over a number of

years.

One of the best metaphors for caregiving I’ve ever heard is

that, “It’s a marathon, not a sprint.” Marathons are… long.

They are not always hard, but they’re not always easy ei-

ther. You’ll need to take breaks to restore your energy.

Support from those close to you will give you strength

May/June 2018 Page 6

when you feel you don’t have any left. At times you’ll

need to slow down, and at other times you’ll want to

move faster. Pacing yourself will ensure you have the en-

ergy to navigate the course. Paying attention to your

physical and emotional well-being will help you to make

changes based on what you need.

The idea is to turn these metaphors in to actionable steps

so that you will feel supported during every stage of your

caregiving journey. As Brene Brown said, “We don’t have

to do it all alone. We were never meant to.” Here are

some steps you can take to make sure you’re supported,

no matter where you’re at. Please note that the caregiv-

ing journey is rarely linear. You might find yourself mov-

ing back and forth through these stages, or skipping some

all together. Use these suggestions as they feel right for

you.

Early Stage

You might be in the early stages of caregiving if you’re

providing “light” care for your loved one. This could look

like helping out with chores around the house, assisting

with transportation, or helping with your care partner’s

finances.

This is a great time to start exploring your resources. Look

in to the services that are available in your community,

and learn as much as you can about your loved one’s

condition. The more you know, the better you’ll be able

to help. This is also a good time to line up supports for

yourself, even if you don’t take advantage of them just

yet. If your spouse or family member has recently been

diagnosed with a condition, you might be experiencing

some challenging emotions that would benefit from emo-

tional support. Consider looking in to counselling services

or caregiver network groups.

Middle Stages

In this stage, you might be providing significantly more

care than you were before. Your loved one might need

you to help with most forms of transportation, and every-

day tasks such as bathing, grocery shopping, and cooking.

You might be navigating several health care services with

your loved one. You might notice that you’re more tired

than usual, while experiencing a significant amount of

stress or worry.

Take advantage of counselling services and network

groups. Schedule time for self-care the same way you do

anything else, even if it’s just half an hour to go for a walk

by yourself or ten minutes for a phone conversation with

a friend who makes you laugh. Look in to and take ad-

vantage of services in the community, such as meal and

cooking services.

Later Stage

Much of your life is dedicated to caring for your loved

one at this stage. Your care partner’s health has declined

significantly, and although they have support from health

care professionals and other services, you are responsible

for a great deal of their physical and emotional care. You

have big responsibilities, such as major decision making.

Your loved one’s ability to participate in activities without

you is limited, and you are experiencing loss of compan-

ionship.

This is a fitting time to access palliative and respite ser-

vices. Palliative care is a support option for both of you,

and is designed to enhance quality of life with resources

such as counselling for caregivers and emotional and

physical therapies for patients. Look in to and access

overnight respite services. Getting a good night’s rest and

taking some time for yourself is crucial for your well-

being in this stage as well, although it might look differ-

ently than it did in the earlier stages.

Remember to honour and be kind to yourself, no matter

what stage you’re in on your caregiving journey. Get sup-

port, practice self-care, and if you so wish, call yourself a

caregiver with pride. You are giving an indescribable gift

to your loved one by providing them with care, and you

deserve to be recognized and supported for all you do.

The Family Caregivers’ Grapevine Page 7

Gratitude Corner: The Gratitude Calendar

June 2018 Sun Mon Tue Wed Thu Fri Sat

1 2 Caregiver

Mini Holiday

10:30AM-3PM

3 4 5 6 7 Network

Group 7-9PM

8 9

10 11 12 13 Network

Group 10:30AM

-12:30PM

14 15 16

17 18 19 20 21 22 23

24 25 Walk & Talk

1:30-3PM

26 27 28 29 30

Choose a monthly calendar that makes you smile when you

look at it, and know you’re not going to be using it in the

“traditional” way. Instead of events or appointments, you’ll

be filling this calendar up with memories of the best parts of

your days. At the end of every day, or even every few days if

you forget, write one thing down on that calendar day that

you were grateful for. At the end of the month, you’ll be

able to look back at your calendar and marvel at all the little

moments that brought you joy.

I am on my fourth month of this practice, and I can attest to

its power. I find it especially effective after a rough week or

month, because it shows the beauty of life even through the

hard times.

By Cassandra Van Dyck

*This idea was adapted from Passion Planner

May/June 2018 Page 8

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.

I Am A Mother to My Mother

By Jann Arden

I am a mother to my mother. It's a massive learning curve, not only because I didn't have children of my own, but be-cause there isn't a hand-book telling me what I should or shouldn't be doing. Alzheimers is a different disease for every single person it inhabits. Everything is a trial by fire. My biggest enemy is patience, or rather, the lack thereof. I feel myself crumble as my mom's memory crumbles. I feel part of myself die a little bit more every time she forgets something new. It's as if we are joined still- by that ever pre-sent cord that connected us all those lifetimes ago. Last night when she was here for dinner, she got up and said she had to use the washroom. She made her way over to the side deck and was trying to go outside. I asked her where she was going and she said, "I'm trying to get to the bathroom" "The bathroom is this way mom." "It is?" "Don't you remember the little side bathroom?" My heart sunk. I walked her over towards the door and she acted like she had never ever set foot in that part of my house before. "Well, this is a cute room." She had her arms folded across her chest as she looked from side to side.

I wondered how from one day to the next, things could simp-ly disappear. I felt like crying and then in the next breath I wanted to laugh out loud. The whole thing was so sublime. "Have you always had this?" she said to me with an eyebrow raised. "Yes." "Have I used this bathroom?" "Yes." I am a mother to my mother and I don't know what I'm doing half the time. I don't know if I'm doing the right thing or the wrong thing, I'm flying by the seat of my pants and hoping that I'm not making things worse than they are. I lost my temper a few hours ago. Mom had taken the leather straps off of my dog bag, and no, I don't why she thought she needed to do that, and she doesn't know why either. I can't use the bag without the straps and I had just replaced them a few months ago. Any-way....long story short....I huffed and puffed and stormed out of her house and across the driveway to my place with Midi under my arm in the bag with NO straps. I was an idiot. Im-pulsive and bratty and stupid and I knew I was before the words "WHY DID YOU TAKE THE STRAPS OFF?!" even came out of my mouth. I hurt her feelings. I saw her head drop down and I wanted to stab myself in the eyeball.

Donna the care worker told me that she would look for them...."Don't worry", she said. "We'll find them." I feel embarrassed. Still.

Of course they found them two minutes later on the coun-

ter.

NO BIG DEAL.

I told mom how sorry I was and that she didn't deserve to be

subjected to my behavior. I said I was so sorry a dozen times.

"Would a thousand dollars make up for it?" (I was kidding

around of course) And she said right away without missing a

beat, "How about five thousand?"

Source: https://www.facebook.com/JannArden/

posts/1273511699352733