Caregiving Support Spotlight – Willow Part 1

When I was looking for support as a caregiver, I never found what I needed. Perhaps it’s because I never found Willow. Here’s how they describe themselves:

Willow Breast & Hereditary Cancer Support was founded in 1994 as a national, not-for-profit organization. Willow provides free-of-cost support, insight and information to anyone affected by breast cancer or hereditary cancer.

Willow – caregiver support done right

At Willow they do so many things right, it’s going to take me multiple posts to explore. Right off the bat however, they have separate sets of information for caregivers and partners. This is really important. I say this a lot. Every cancer journey is different – whether it is the experience of a caregiver or a person living with cancer. This post is focused on the spouse or partner who falls into caregiving by default.

In sickness and health…

Being a good caregiver is a choice, not a duty. A partner, spouse, or lover is not necessarily a good caregiver. They frequently fall into a caregiving role and sometimes for whatever reason, they just can’t perform. There is however an implication that partners must be caregivers. Look at the typical wedding vow, the part about “in sickness and in health”. That promise is made at the peak of romantic love. That promise is made without knowing how tough things can really be. That promise is batshit crazy. It’s like being 25 and saying, “I’m going to run a marathon before I’m 40,” then not training for 15 years and deciding to keep that pledge on the eve of your 40th birthday. Some people will manage to cross the finish line. Others won’t. Either way, it’s going to hurt.

Caregiving is a choice

The problem is when we make this choice without being aware of what’s motivating it. When a crisis hits, people typically respond in a really primitive, animalistic way – fight, flight or freeze. When Laura was diagnosed my response was fight. I took the cancer as a battle narratives to heart. I made her fight my fight. I did what a “good” husband should do. I became a heroic caregiver. Later as I burnt out, my flight response kicked in. I became withdrawn and self obsessed. I was then a “bad” partner and caregiver.

The problem is the polarity

We all tend to see things in black and white: good caregiver vs. bad caregiver. There’s a Right way and a Wrong way to go about things. This polarity shows up all over the place – even places with really good intentions. I remember watching the documentary Mondays at Racine at a Rethink Breast Cancer film festival, Breast Fest.

Laura and I were on a panel. One husband in the movie was totally withdrawn and hurting. His wife was portrayed as a powerful warrior. He was the object of scorn. On the panel I laughed, “Nobody wants to be that guy,” but deep down inside I actually was. Having eventually found myself in his shoes, I now understand that he must have been paralyzed by fear and feeling profound shame. I judged the hell out of him. I’m guessing what he needed was compassion and time to process.

Breaking down the Battle metaphor

In the typical Cancer Battle narrative, there are good guys and bad guys.  It helps us understand and simplify something that is incredibly complex and hard to comprehend.  It provides our fight/flight instincts with something to push off of.  The patient is a fighter – cancer is the enemy.  A good caregiver is a noble hero, and a bad one is a shmuck – or worse a villain.

But cancer is not evil.  It is just a persons’ cells growing out of control.

And – this one might be harder to swallow –  a weak or ineffective caregiver is not a villain.  He or she is just a person who can no longer cope with the situation at hand, like a runner who has to drop out of a race.

What to do

The first step to getting past this is noticing and naming when we are engaging in the cancer battle story. The next step is to communicate. This is where programs like the one Willow offers can help. They provide peer support for people living with cancer, their partners and caregivers. Most importantly, they recognize that a cancer diagnosis can be really difficult for a partner. They even help normalize the intense feelings a partner can feel.

I’m having a hard time coping with my partner’ diagnosis – what should i do?

You may be experiencing many of the same feelings that your partner is, such as anger, sadness, anxiety, and fear. You might have the natural urge to “fix” things, and it can be frustrating to be faced with something over which you have no control.

All these feelings are normal. It can be helpful to speak with others who are also caring for a partner with cancer. There may be a support group that meets in your area for partners or caregivers. There are also online communities and discussion forums.

You may find you need the assistance of a professional counselor, psychologist or psychiatrist to help you deal with your feelings and develop coping skills. Seeking professional help when you need it is a sign of strength, not weakness, so don’t be afraid to get the help you need.

Remember, you can always call Willow to speak with a member of our Support Team about your concerns. Call us at 1-888-778-2100.

– See more at: http://www.willow.org/get-information/for-family-friends/partners/#sthash.xIHZvnIE.dpuf

In my next post I will go deeper into more of the rules vs the realities of being a caregiver.

 

What have I become? Caregiver burnout

What have I become?
My sweetest friend
Everyone I know
Goes away in the end
You could have it all
My empire of dirt
I will let you down
I will make you hurt

Trent Reznor – Hurt

Everyone’s cancer journey is different. Every caregiver and partner reacts differently. When Laura was diagnosed, I was overwhelmed by fear and a desire to save her. I went into fight mode. Even writing this blog brings back feelings of overwhelm. This is a story of my experience of caregiver burnout.

Now with 100% more cancer!

Now with 100% more cancer!

Heroic vs reluctant caregivers

I started as a heroic caregiver. As time wore on and I neglected myself, I burnt out, closed off and became more a reluctant caregiver. This had a huge impact on how I looked for support. As a heroic caregiver, I wasn’t only looking after Laura. I was seeking support for myself. People suggested that I ‘look into’ Wellspring and Gilda’s Club.

Looked into wellspring and found stuff like this:

Drumming is an expressive technique that uses percussion and rhythm exercises to express emotions, manage stress and improve a sense of emotional and physical well-being. No prior drumming experience is necessary.

Neat. Drumming. However: First obvious complaints: Signing up is a pain in the ass. More appointments during the caregiving crisis = more pressure / little relief. Appointments during business hours at a cancer support centre = more time in cancer world, less time in world I wanted to create for myself.

I was overwhelmed by cancer. My whole life had become cancer. In the few minutes I had to look after myself THE LAST THING I WANTED WAS TO BE AROUND A BUNCH OF OLD PEOPLE WITH CANCER.

Yeah. I said old people.

These aren’t the droids we’re looking for

Initially I went with Laura to every appointment. It was extremely rare to see someone our age in the waiting room. We were met with looks of pity by the other clientele. It sucks beyond words to be in the prime of life and pitied by people receiving their old age pensions. So how did I know that the drumming group would be full of old people? Check out the image that came with the drumming workshop:

Old ladies drumming.

All women. Many look like my mom, or her friends. 55+? Not my crowd. I love my mom. And that’s not the support I was looking for.

The next suggestion? Check out Gilda’s Club. Both Laura and I have emailed them several times through the years. I’m still waiting for a reply. I was told that they are like people ‘of a certain generation’ who prefer the phone.

Contact Gilda's Club today!

Contact Gilda’s Club today!

 From hero to zero – the price of caregiver burnout

A year post diagnosis I was ‘done’ with cancer. Fed up. Tired. Cancer had eaten too much of my time. Too much of my energy. Too much of my life. Without support during my ‘heroic’ phase, I burnt out. At that time Laura learned about Couplelinks

Welcome to Couplelinks – a professionally facilitated, online workshop for couples affected by breast cancer. This project is currently only available as a research study to individuals living in Canada.

Tired of it all, I resisted. She resented. An opportunity was lost. Since then I’ve uncovered lots of helpful websites and places that recognize how important it is for a caregiver / partner to look after themselves.

What would have helped

What I found were front line cancer workers with vague ideas of the supports that existed for caregivers. They were busy. In their world, I was an afterthought. What I needed was a professional who could help me navigate the cancer world and discover the services that could really help.

In the next post, I’ll write about a whole bunch of great online resources I’ve discovered through Willow. They are showing incredible leadership in caregiver support. As well, there are lots of fantastic resources for young adults living with cancer. I’ll explore those too.

I welcome your comments below.  And remember, sharing is caring!

#metsmonday

Caregiver support – putting caregivers first

Becoming a caregiver was not something I ever planned for. The kind of crisis caused by a cancer diagnosis in a family? Not something at the front of my mind as Laura and I made our wedding vows. With two small children I was counting on a couple of broken bones. Or perhaps a scary fever. I never imagined that with two kids under five, our family would be thrown into turmoil by breast cancer.

Inflight safety

It’s like that with flying too. Go to the airport. Get on an airplane. Land. Forget the sunscreen. Burn. Return home. Hooray! Nobody expects to need their seatbelt – let alone the life vest stowed under their seat. That’s why inflight safety videos are so laughable. Here’s a particularly  funny one from Southwest Airlines:

I’ve heard them so many times I don’t listen anymore. Recently, however, something struck me. There’s a profound wisdom in these videos. Check it out – this one is cued to a part that’s really important for caregivers to hear:

“Be sure to secure and adjust your own mask before helping others…”

Pretty simple right?  It makes sense. Once you look after yourself, then you are able to truly help others. When it comes to catastrophic events, selflessness can lead to martyrdom. This may seem heroic, but frequently just results in more people getting hurt.

Getting pounded? Get grounded

Out surfing one day, a friend and I got caught in a current. We were cycling from being pushed into some nasty rocks and heavily breaking waves. This was in a spot with a history of drownings no less. Exhausted, I managed to break the cycle. My buddy started shouting for help. He had a cramp and was panicking. Instead of plunging back into the washing machine he was trapped in, I took a couple of moments. I caught my breath and got my wits back.  I shouted instructions of how to beat the current. He got out okay. I intuitively realized that I had to take care of myself before I could help my buddy.

Caregiving through crisis

A cancer diagnosis isn’t a plane crash. But it sure felt like one for us. When Laura was sick, I put everything on hold. Her health became my central focus. Everything in my life – my career, my health, my feelings became secondary. I wanted to save Laura. I didn’t realize that I couldn’t cure her. My role was support. In order to do that well I had to ground myself first. I didn’t. Metaphorically speaking I didn’t “secure and adjust” my own mask. It worked at first. In the end it wasn’t sustainable. I imploded. The impacts of that implosion were terrible.

Caregivers’ needs are important too

I looked for support for myself. Caregiver support offered by most breast cancer organizations focuses on how caregivers can support people on their breast cancer journey. It makes sense. People with critical illness are their focus. Typically caregiver information would contain a small note: “Try to find time to take care of yourself.” These seemed tacked on with no indication of how caregivers might actually engage in self-care during a crisis. End result? I felt like an afterthought.

A new model of caregiver support is needed

Over the next several months I’ll use this blog to discuss caregiving. I’ll share personal reflections on my caregiving journey. And, more importantly, I’ll explore how caregivers can take care of themselves during and after a medical crisis.  This will all be peppered with some fun videos. Check back often and share this with those who might need it!

Cheers!

Jim

 

Care for caregivers

Hi,

Welcome to my site,

Ideally you wouldn’t be looking for something like this. If you’re here, I’m guessing there’s someone you really care about who’s facing the fight of their life right now. That’s scary. Little things that you took for granted? They can seem like a big deal right now. I sure you wish none of this was happening.

I know – I’ve been there too

Just about four years ago now, my life changed. I became a caregiver. My wife, Laura, was diagnosed with metastatic breast cancer. It was rough on her. Rough on the kids. And rough on me. Yeah, that’s right – rough on me.

Caregivers are too often left out

Which just sucks. I hated being worried about Laura. Worried about the future. Worried about money. Worried about our kids. Worry Worry Worry Worry. The the constant appointments and the endless hours in hospital waiting rooms? Managing the kids? Trying to maintain an income? Trying to look after myself despite the late nights googling medical terms and their definitions? Scouring cancer websites and forums for glimmering stories of hope? Ugh. It was exhausting and overwhelming.

We had help

As a family help was there. Lots of it. Food. Playdates for the kids. Babysitters. Money. You name it. My full time job title  became coordinator of help. Does this sound at all familiar to you? Managing all that help can be a lot of work. And, at times I found that I had to ‘stay positive’ or ‘stay strong’ by putting on a brave face for others.

Eventually I crashed

I needed more support. But I had neither the time nor the money to spend going to my therapist as often as I could have. There’s free support out there. It’s usually in hospitals, which I had enough of. Or it’s during business hours while I was working. Or it was complicated and difficult to join. On top of all that, as a caregiver, I was an afterthought of the health care system. No one suggested that I might need some help. No one gave me an idea of where to go.

You don’t have to put up with that

Here you’ll find lots of resources. Everything from chemo friendly recipes and links to juicer reviews to handy check lists of ‘good to have’ stuff while your family is facing a crisis. As well I’m building an annotated links page to help you connect with some great support resources in your community. It isn’t built yet, but if you contact me, I’ll shoot you a quick email with some notes on some services.

Life coach for caregivers

As a caregiver, you’re not the sick one. And you might need some support. As a life coach I can help you keep it together during this crisis so you can be there for your family. No time? We can have a phone or Skype appointment at any time. Contact me for information on my three coaching packages

  • Facing the Crisis – for when things first go sideways
  • The New Normal – Support during treatments
  • What’s Next? – Moving forward after the storm has passed.

So if you’re a new caregiver and you’re feeling overwhelmed, you can face it. Send me a message, I might be able to help make it easier.