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 I became withdrawn and self obsessed.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.

 

Show up post treatment!

Here’s a video that was made by rethink breast cancer featuring Laura and I.

I wrote a bit about how to show up post treatment:

The ugly truth: Cancer = Loss

No matter how much pink you dress it up in, healing from cancer is a painful process. Side effects from treatment have both a physical and emotional impact. Post treatment, Laura appeared well, but underneath she was struggling with fatigue, pain, memory loss, lymphedema, chemically-induced menopause and the knowledge that her life is shortened by her illness. This is an ugly truth that’s generally avoided. People tend to dislike talking about grief and loss. They avoid it in their own lives and avoided it with us.

What to do?

Check your assumptions

Cancer changes people. What someone could or would do before they went through treatment might not be the same after. Everything mentioned above has an impact. Give people time to heal. Let them set an agenda for themselves. Frequently people will try to get back to how they were pre-treatment. If you see them stumbling, find ways to help lighten their load.

Read the rest here: