Navigating New Terrain: The Male Caregiver’s

Journey

By Cassandra Van Dyck

"If you love someone, you'll be a caregiver.

If you live long enough, you'll need one."

– Peter Rosenberger

Are you a husband, son, uncle, nephew, or male friend

caring for a loved one? Chances are, you may feel alone

– but you are not. The number of male caregivers in

Canada is growing, and they face some unique challeng-

es. Many people have the capability to be a caring, lov-

ing, supportive caregiver, no matter their gender. How-

ever, most folks grow up in households, and most likely

a culture, that sees females as the primary caregivers.

“…I think that anybody who is a Mom has years of valua-

ble training and experience that many men don’t have

as they lack that experience of caring for someone,”

says George, who cared for three of his parents. Gender

roles in our society are shifting. Men are staying home

with their children while their partners go to work, and

they are caring for their wives, sisters, parents and

friends when they need help.

Of course, being a caregiver for a loved one is a differ-

ent experience than staying home with a child. The

caregiving role often comes unexpectedly and thrusts

men in to a situation they were not prepared for. “The

biggest challenge which drains you emotionally is first

not knowing what to do and then wondering if you’re

doing the right thing,” says George. This is a common

feeling for caregivers, but could it be intensified for

males? “I don’t know whether Mr. Fix-It is hardwired

into our genes or drummed into our skulls, but this one

stereotype that holds true across the board. Psycholo-

gists, social workers, medical doctors, breast cancer sur-

vivors […] all agree. Guys feel compelled to ‘fix…’” writes

Marc Silver, in Breast Cancer Husband.

This is not to say that a “fix it” attitude is a negative one

to have. The urge to fix can solve lots of practical prob-

lems, such as sorting out finances and care. Two of

George’s parents had dementia, and he feels strongly

that an education package for caregivers would be a

huge help in managing the diagnosis and preparing for

the changes ahead. “A practical guide tailored to the

disease would be very useful which might include things

like the hourly routines and log books of medicine ad-

Facing Challenges May/June 2017

A publication by NSCR’s

Caregiver Support Program

renew strength , gain knowledge

The Family Caregivers’ Grapevine

May/June 2017 Page 2

-ministered, etc. Also, emergency numbers that

can help 24 hours a day.” George says that what

helped him most in his caregiving journey was

educating himself on his parents’ diagnosis and

creating a care plan, which felt overwhelming to

him at first. George acknowledges that while an

education package would help people care for

their loved one, having one would not help ease

the emotional burden on caregivers.

A recent article by AARP was titled The Hidden

Male Caregiver. The article cites that 40% of

caregivers are male. So why are they hidden? “I

think men may see it as a sign of weakness if you

have to ask for help. It’s like you’re appointed a

project manager for a major project and you

have no idea what you’re doing and you have no

idea where to start and you know you have to

get going right away,” says George. Another rea-

son for the “hidden males” may be the hesitation

of some men to identify as caregivers, even

though they providing emotional, physical or fi-

nancial support for a loved one.

If you are a male caregiver, there are some

things you can do to help ease some of the pres-

sure of caring for a loved one.

Listen to what your body is telling you.

“When you feel the hormone that stress produc-

es in your body building up (cortisol) I used to

use walking to burn it off. Also using an iPod with

headphones with some good bass seemed to

drain some of the stress away,” says George. Lis-

tening to your body and paying attention to the

rise of cortisol can help you to manage it. When

the stress hormone surges, you might feel a

tightness in your throat and have trouble focus-

ing. When this feeling sticks around, it can dis-

rupt sleep and make it hard to make decisions

and think rationally. Going for a walk (like George

suggested), meditating, hiking, or singing loudly

are great ways to get rid of excess cortisol.

Spend time doing the things that make you happy,

even if it’s just for a little while.

Make your hobbies a priority. “Taking time for

yourself is one of the things that most never do

for lack of energy, time or money. That’s why it

is so good to have a hobby. It’s personal and

mandates you to spend time with yourself,” ad-

vises George.

Take advantage of networking groups and educa-

tion sessions.

Groups can help to ease feelings of isolation.

Consider attending just once, even if it is some-

thing out of your comfort zone, to see what it’s

like. Sometimes attending a group can feel over-

whelming, but many find comfort and compan-

ionship once they’re there. Networking can pro-

vide invaluable resources for caregivers, such as

emotional support, ideas, and tips for self-care.

Read a book.

If you enjoy reading, there are several books

about caregiving from a male perspective. Take a

look at our Wellness Corner for suggestions!

Caregiving can be a tough role to step in to, but

its rewards are deep. George reflects, “Knowing

that you were taking care of someone in their

darkest hours and that they had taken care of

you all your life. It was nice to be able to give

back even though the sorrow was often over-

whelming.”

The Family Caregivers’ Grapevine Page 3

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 Caregiver Spring Tea 1-3PM

13

14 15 16 Persian Caregiver Group 5-7PM

17 18 19 20

21 22 23 24 25 26 27 Caregiver

Expo 9AM-

3PM

28 29 Walk &

Talk

1:30PM—

3:30PM

30 31

May 2017

Network Groups

Thursday, May 4th & June 1st at 7PM

Wednesday, May 10th & June 7th at 10:30AM

Take some time for yourself

Connect with others who understand your experiences

Learn relaxation strategies to use at home

Walk and Talk

Monday May 29th and June 26th

Join us for the company, fresh air, and some gentle

exercise. We walk at a pace that is comfortable for

everyone. We meet in front of the washrooms at John

Lawson Park rain or shine!

Persian Caregiver Group

Tuesday, May 16th at 5PM

3rd Floor Meeting Room

North Vancouver City Library

120 West 14th Street

Caregiver Spring Tea

Friday May 12th

1-3PM in the lobby at Evergreen House

Drop in for refreshments, conversation, and some en-

couragement in your day.

To acknowledge the special kind of support caregivers

provide their loved ones in facility care, we are

hosting our annual Spring Tea at Evergreen House. All

caregivers are welcome to attend.

May/June 2017 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 Expo

Saturday, May 27th 9AM-3PM

Silver Harbour Seniors Centre

Visit over 30 exhibitor booths

Swag bags for the first 100 attendees

Presentations and demonstrations throughout the day

The second annual Caregiver Expo celebrates BC Family

Caregiver month.

This expo provides unpaid caregivers an opportunity to

feel celebrated while learning about the various support

services available on the North Shore –for themselves,

and for the ones they are caring for.

Mini Holiday

Saturday, June 10th

10AM—3PM in Whistler

Be rejuvenated on this delightful mountain getaway! The

day will include time to socialize, share caregiving experi-

ences, relax and unwind, and create your own Vision

board. Vision boards are a visual map of what makes you

happy, and they help to nurture more positive energy in

your life, no matter the situation you are currently in.

We’ll carpool from Capilano Mall, and enjoy lunch at a

reasonably priced restaurant in Whistler Village.

All details to be confirmed when you register.

Take a longer break … We encourage you to arrange res-

pite for your loved one, and to treat yourself to a night

at one of the hotels.

Wellness Corner

Some helpful reads for the male caregiver’s bookshelf.

Barg, Gary. The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have A Life Of

Your Own

Levy, Alexander. The Orphaned Adult: Understanding and Coping With Grief and Change After the Death

Of Our Parents

McElhannon, Buddy. Walking Through the Valley Of Tears: One Man’s Journey from Grief to Gratitude

Rosenberger, Peter. Hope for the Caregiver: Encouraging Words to Strengthen Your Spirit and Wear Com-

fortable Shoes

Silver, Marc. Breast Cancer Husband: How to Help Your Wife (And Yourself) Through Diagnosis, Treat-

ment, and Beyond

Tucker, Michael. Family Meals: Coming Together for An Aging Parent

The Family Caregivers’ Grapevine Page 5

When Your Loved One has Parkinson’s Disease:

6 Tips for Coping with Changes

By Cassandra Van Dyck

“I now realize that this is a marathon, not a sprint,

and that we need tools to help us cope with what is

ahead.” – Parkinson’s caregiver

A diagnosis of Parkinson’s disease is tough for the

person diagnosed and for their loved ones. There

is no cure for the degenerative disorder of the cen-

tral nervous system, that mainly effects the motor

system, though the symptoms and progression can

vary greatly from person to person. For the care

partner of someone with PD, coping with the

changes that come with the disease can be chal-

lenging. Care partners may be expecting physical

changes in their loved one, but may not be pre-

pared for cognitive changes or other symptoms

such as fatigue, constipation and sleep problems

which can interfere with daily life. In advanced

stages, the role of a care partner for someone with

PD can be physically demanding as well, as they

increasingly have to assist their loved one with

physical tasks such as getting dressed, eating, and

bathing. The evolution of PD is unpredictable -

physical and cognitive changes can happen slowly

over time. Coping with grief and loss as PD pro-

gresses can feel overwhelming.

Are you or is someone you know caring for some-

one with PD? Here are some tips to help you cope

with the changes that your loved one may go

through.

Work with your health care team.

If your loved one has Parkinson’s, chances are you

already have relationships with many health care

professionals. Knowing and building your team

may help you and your loved one manage symp-

toms and changes and can improve quality of life.

Try not to rely on one professional to build your

team! Sometimes both of you will have to do a bit

of work to access services. A movement disorders

specialist, speech-language pathologist, physical

therapist, occupational therapist, and social work-

er are examples of professionals who are great al-

lies for your journey.

Stay up to date with the latest research and treat-

ment strategies.

Jane Fonda found out her partner, Richard, had PD

on their first date. She didn’t think much of it until

they fell in love. “Richard, if you don’t take your

disease seriously and become an expert in it so

you know exactly what your options are, I’m not

hanging around,” she told him. He did, and they

work together to manage the symptoms and the

ups and downs of PD.

The more you know, the better equipped you will

be to handle changes and create strategies to cope

with symptoms as they come up. If you read or

hear about a treatment strategy you were not fa-

miliar with before, talk to someone from your

health care team about it! The Pain Centre at Saint

Paul’s Hospital, The Michael J. Fox Foundation for

May/June 2017 Page 6

Parkinson’s Research, and research by Dr. James

Beck are great places to start.

Keep asking questions until you understand the an-

swers.

“UNDERSTAND – The disease, the roles of the var-

ious health care professionals and the treatments

available. Keep a drug diary. Record and research

medication responses. Keep a binder of infor-

mation on PD.” – Bob Kuhn

With the increasing demand on BC’s health care

system, appointments can often feel rushed as

doctors endeavour to see as many patients as

possible during operating hours. Your health care

professional may explain something and think you

understand, while you may leave feeling con-

fused. Don’t be afraid to ask questions until you

understand the answers. Try repeating back to the

professional what you’ve heard to make sure

you’re leaving with all the information you can

get. If you’re not sure how to respond, try starting

with, “I think what I hear you saying is…” If you are

given treatment options such as prescriptions or

surgery, ask for details on the benefits, side

effects, and treatment options. Getting clarifica-

tion will help you feel confident in providing care

and accessing the services you may need to move

forward.

Know your supports and services. Access them.

“You can’t do it alone. Lean on your family and

friends. Make use of non-profit volunteers and

government agencies. Look for and accept all the

help you can get.” – Maggy Hurchalla, sister of Ja-

net Reno

With the increasing number (and awareness!) of

caregivers in Canada, there are a growing number

of services available. Network groups, one-on-one

support, respite services and information packag-

es are just some of the resources available. The

Parkinson Society of BC (parkinson.bc.ca) is a fan-

tastic resource. If you need a break, consider look-

ing in to local respite care, such as Cedarview

Lodge in North Vancouver.

Make friends with another care partner.

“Lots of people want to ride with you in the limo,

but what you want is someone who will take the

bus with you when the limo breaks down.” —

Oprah Winfrey

Caregiving comes with unique challenges and re-

wards which can be hard for friends and family to

understand. If you know a caregiver, reach out to

them to see if they’d like to go for a walk or for

coffee. If you don’t know any other caregivers,

consider accessing a network group to meet some

other folks who are going through some of the

same things you are. There is also a growing num-

ber of support groups found online. These can be

an accessible way to quickly connect to people

going through similar experiences!

Remember to make self-care a priority.

“Today, and each day forward, try to find the fun,

the laughter and joy of the day and, if nothing

else, give yourself a hug. You deserve it.” – Maria

Shriver

The better we care for ourselves, the more able

we are to cope with the challenges that come our

way. Schedule time in your week to do the things

that keep you nourished. If you are struggling with

this, consider asking for some support from fami-

ly, friends, caregiver support programs, or your

faith-based community.

The Family Caregivers’ Grapevine Page 7

Sun Mon Tue Wed Thu Fri Sat

1 Network Group 7-9PM

2 3

4 5 6 7 8 9 10 Mini Holi-

day 10AM-

3PM

11 12 13 14 Network Group 10:30AM-12:30PM

15 16 17

18 19 20 21 22 23 24

25 26 Walk & Talk 1:30PM-3:30PM

27 28 29 30

June 2017

Gratitude Corner

The Gratitude Walk

“Let the beauty we love be what we do. There are hun-

dreds of ways to kneel and kiss the ground.” – Rumi

If you’re having a tough day (or even if you’re not), take 30

minutes and go for an easy walk around your neighbour-

hood. Challenge yourself to find as many things as possible

to be grateful for. Maybe you’ll notice two people holding

hands or some friends laughing in a coffee shop window.

The smell of fresh coffee and hot cinnamon buns. A busker

singing joyful music or a parent pushing their newborn in a

stroller. Make a list in your head of all that you see, or con-

sider treating yourself to a tea at a local coffee shop and

writing it all down.

Adapted from daringtolivefully.com

May/June 2017 Page 8

North Shore Community

Resources

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.

You can support the work we do by

joining NSCR’s

Caring Community,

our donor program.

Thank you to everyone who has made a donation.

Contact Nancy Hollstedt to make a

charitable donation:

Telephone: 604.982.3311

Email: nancy.hollstedt@nscr.bc.ca

CRA#11906 1273 RR0001

Once you’ve been drafted, you may as well enlist

By Susan Macalauy, The Caregiver Network

Few of us choose the role of caregiver. Rather, many of us are drafted

into it unwillingly; some of us are dragged kicking and screaming. […]

Here are three key concepts that are “hooks” to some of my most im-

portant lessons:

Acceptance Once I’d made the decision to come back and be a caregiver, I

also decided there was no point looking back and missing the lifestyle I

had loved, the business I had abandoned, the friends I would never see

again, the trips I wouldn’t take, the money I wouldn’t make, the opportu-

nities I would forgo, the fun I would never have, and so much more. I

chose to make the most of where I was, difficult as it was, and I created

the best hand I could with the cards I’d been dealt. There was power in

that.

Discovery I’m a naturally curious person, and I love to learn. Spending so

much time alone with Mom forced me to look at our relationship in new

ways. While we had always been good “friends,” it had not always been

easy. All of a sudden we were together in close quarters: two fiercely in-

dependent women each of whom had run her own business for several

decades, each with a mind of her own, each accustomed to doing what

she wanted when she wanted and not having to accommodate anyone

but herself. We were very much her own people. Plus, one of us had a

brain disease about which we both new little. It was a miracle we did-

n’t kill each other. But we didn’t. We found ways to get out of conflict and

onto safer ground. A whole lot of healing ensued.

Rock ‘n Roll They say life is a roller coaster. If it is, being a caregiver has to

be the world’s biggest and baddest. That’s a bit of a shock for someone

like me, whose idea of adventure is the merry-go-round, or the Ferris

wheel. But what I found was that feeling my feelings, whatever they hap-

pened to be (the lowest lows or sometimes the highest highs) was thera-

peutic if a little intense at times. I don’t know what it must be like for care

partners who deal with other kinds of diseases, but with Alzheimer’s I ex-

perienced raw emotions that would turn my world upside down, as well

as joys that would make my heart sing. They were all part of the journey,

and now that it’s over, I’m thankful for riding (and writing) the ride like I

did.

My mom died on August 17, 2016. I miss her. But I’m glad she’s danc-

ing free of the confines of the broken body and mind she left behind. I’m

grateful for the ten last years I had with her, and for the lessons I learned

and that I’m still learning as a result of our journey. My hope is that others

might be blessed with a fraction of the grace I have found.