|
By the time Tracy was tested for multiple myeloma, we were months into utter panic. Her back pain was worsening and several weeks before she had cracked something in her back when standing up at our son’s baseball game. She drove herself to the ER and was given pain killers and told it was a muscle cramp. The next morning, she fell on the kitchen floor and I couldn’t pick her up. When the diagnosis finally came, I was in a fog of denial and panic. It can’t be real! How would I do it? There's no way I can care for Tracy. And what about the kids? And then I read about the high number of families that go into bankruptcy... There’s so much I need to do: kids sports, healthcare, financial assistance, cleaning, cooking, buying groceries, Tracy’s appointments, getting someone to watch the kids. I’m washing the dishes at 11 pm, worn out, and only remember that I got up at 6 am. Tracy says she needs help going to the bathroom. She can’t walk on her own. Five fractures in her back. It’s before we have a walker or cane. I bend over in front of her chair and she wraps her arms around my neck and I slowly stand, with the full weight of her body straining the middle and lower parts of my back. She screams as the freshest cracks in her back are stirred. She stands and I help her to the bathroom, knowing that if she falls or I drop her, her vertebrae could crumble. Any personal care in the bathroom is my job - she can’t turn her body at all. I’m a long way from calling my neighbor at 1 am asking her to come over to stay with the kids so I can take Tracy to the ER. I’m a long way from signing up for the Meal Train so we don’t have to eat McDonald's 3 times a day. I’m a long way from setting up a GoFundMe page. I’m a long way from jumping to the front of the line at the ER and saying, "My wife is on chemo and has a high fever!" People were asking to help and I was still telling them, "I got it - thanks anyway." I hadn't yet filled out those forms for financial assistance. I hadn’t scoured the internet for other means of assistance. I hadn’t yet explained the seriousness of Tracy’s condition to my boss. I was still ignoring the bills. I was a long way from Jack’s Caregiver Coalition. I hadn’t yet said "YES! I do need help!" I hadn't yet been bold. Damn, I wish I had been so much sooner.
By: Mike McGarryMike McGarry is a caregiver for his wife, Tracy, who has multiple myeloma. Mike and Tracy have 2 boys, Joseph, 13, and Jacob, 11.
0 Comments
When friends and family hear the news - they will almost immediately want to help. This is great, of course, because we all need help. But it's often difficult to figure out what help we need - and for the helper, how best to help. Without any guidance though, your family and friends may choose something on their own and their version of 'help' might not be what you want or need. For example - many people send flowers or plants. This is lovely, but plants need to be planted, watered, trimmed and maintained - otherwise they turn into a vase of dried, decaying and smelly twigs. What most people don't realize is that, when you're busy caring for your loved one, you definitely don't want/need more things to do - and plant maintenance (for me) was one of those things I didn't want to do. Other friends might make and send food. This is GREAT if you're not handy in the kitchen or if you have other family members who require meal preparation. If so, add it to your request list. In our house, though, food is a tough thing to request because my wife is sensitive to gluten and I'm allergic to dairy. Any food items arriving at our house were quickly eliminated. Thankfully, there is a very easy/quick way to manage this and it comes down to communication. Here's what you do:
It starts with a Post-It. Everyone gets a 5x7” pad of Post-Its. We write down the things we want to talk about—one topic per Post-It. Then, all the topics go up on the wall. Everyone gets 15 seconds to “pitch” their topics to the group. If some are similar, they get combined. Some subjects we’ve covered are: worrying about our spouse dying, intimacy and cancer, feeling guilty as a caregiver, and how to help our kids adjust to their parent having cancer. The Klatch is democratic. We all get 3 votes to allocate however we want. Everyone marks their votes on the topics they would like to discuss. They can put all of the votes on one, or divide them up. Once the voting is done, we add up the tallies. The topic with the most gets discussed first. Once we are done with that topic, we move on to the next most tallied subject. It’s timed.We have a lot of ground to cover, so we stay on task by setting a timer. We begin by talking for 8 minutes. Then we vote again. Do we want to keep talking? Or, do we want to move onto the next subject? We take a quick thumbs up/thumbs down poll. Thumbs up means we keep talking for 4 more minutes before voting again. We know the conversation is over when the majority votes thumbs down. Key Takeaways.
After we’ve discussed each topic, we lock in the learning. What resonated with us? These are the key takeaways. Every participant is given a Jack’s Notebook in which to take notes (if they want). So they often add things they hadn’t thought of to their notes at this time. We move through as many topics as time allows. Although there have been times when one subject takes up most of the time because it is so important to us as caregivers. The conversation flows right where the participants want it to go. We often laugh together. We also can get very deep as we share with one another our experiences and what we’ve found works for us. Some of the participants have just found out their loved one has cancer. Others have been living with it for years. Each of us has something to offer. Each of us has something to learn. The Klatch is really a place of exchange. We come in with a burden, and leave having exchanged it for encouragement, resources, and new friends. The Challenge Tracker 2,000.Before everyone leaves, we challenge ourselves to do something. Anything. It might be taking our partner on a date, or paying for a maid once a month to make life easier. It might be returning to the bowling league you miss so much, or having a difficult conversation you’ve been avoiding. These challenges are easy to forget and push aside in the busyness of life as a caregiver. So we enter them into an online form that helps us hold each other accountable to do what we said we were gonna do. We call it the "Challenge Tracker 2,000"! I challenge you to check out the Klatch, are you up to the challenge?
 A message from Kyle Woody, a Jack's Founder & Executive DirectorDear friends, I'm excited to announce that I've gone to work for Jack's full time, continuing to lead the organization as I have since 2014 when we were founded. It's my hope this news will further inspire all of you that have joined us in our mission, we want you all to know how serious Jack's is. Our mission is no longer just something we work on during nights and weekends or when it's "convenient." It's something we're always working on. Our recent "Extreme Sandbox" program in October is a perfect reminder of why we exist. We had the privilege of bringing a group of men together who've collectively had decades of experience caring for their loved ones with cancer. A group of men who haven't, until Jack's came along, had a community for them. Jack's understands what the powerless frustration caused by losing control to cancer does to a man. So we gave these men the controls of powerful machines and challenged them to annihilate the "Cancer Car". They didn't disappoint! What we do is simple really - our hospitality brings these men together, and together they improve. And as we prepare for November, National Family Caregivers Awareness Month, we have more exciting news to share. Our board is growing. We're launching a series of Twitter Chats titled #Menwhocare during which we'll moderate a national conversation on the subject of men who are caregivers. And we're launching a Podcast that's on a mission to inspire the world to reconsider what men are capable of. Plus we'll have our first ever program at Prince's place! I'm inspired by Prince and the story of his performance at the 2007 Super Bowl. Largely recognized as the best Super Bowl halftime performance in history. Who could forget Purple Rain in that huge Miami rain storm? But did you know that before the show Prince was warned about the numerous risks of performing in that storm. When asked about whether or not to proceed, Prince responded,  Can you make it rain harder? - Prince How bold and confident the guy was to rise up and just get stormed upon, to bring what he brought to that challenge.
At Jack's we believe every man has the potential to face the challenge of cancer caregiving as boldly and confidently as Prince faced that Miami rain storm. And while we're inspired by Prince our story isn't about people like him. It's about the lives of everyday people like you that live in your community. Everyday people that wake up every day and face something much more sinister than a storm. All our best, KW  “One is the loneliest number . . .” begins a popular 1960’s song by Three Dog Night. But 2 can be the loneliest number when your partner has cancer. Treatments left Cindy* and her husband stranded at home and away from family and friends in order to keep germs and illness at bay. We were such social people, and suddenly we didn’t have the same lifestyle anymore. It was incredibly isolating and I was constantly conflicted and guilty when I would get together with friends. Cancer Changes a Partnership |
|||||||||||||||||||||||
 |  |
Everyday life does not prepare anyone for a cancer diagnosis.
Where would you learn this?
In this 2 part blog series, we hope you’ll find comfort in reading the words of real caregivers sharing their very real experiences while caring for their partner. We’ll share their encouragement and local and national resources if you or someone you love is a caregiver.
Where would you learn this?
- Health class in high school? Yeah right: you felt too invincible to listen, anyway.
- Your doctor’s office during a routine physical? Not likely: doctors are too overworked these days.
- Over dinner with your friends or family? As if: try recovering from that conversation killer, “Um, can you believe what our president tweeted today?”
In this 2 part blog series, we hope you’ll find comfort in reading the words of real caregivers sharing their very real experiences while caring for their partner. We’ll share their encouragement and local and national resources if you or someone you love is a caregiver.
The Cancer Diagnosis
My first reaction was shock and surprise—my wife had no family history of breast cancer and she had just finished breastfeeding our (child)!
-Henry*
My wife and I have 2 kids. Cancer became like the third child in our marriage, It was super needy, very unpredictable and could be the biggest pain in the ass.
-Chris’s* wife was diagnosed with Stage IV colon cancer.
Cancer is a perpetual cloud hanging over our heads. I wish I could take away all of her pain. I want to be in her shoes. I want to be the one with the cancer instead of her.
-Tayvon's* wife was recently diagnosed with a recurrence of breast cancer.
It was so hard watching him not feel well and not be able to help him. I felt like I had to be optimistic all the time, and it was hard to balance this and talking about the bad stuff and the what-ifs. I regret not having the end-of-life conversations with him.”
-Cindy's* husband was diagnosed with lymphoma.
Day-to-Day Life
Part of being a cancer caregiver also means taking on additional responsibilities—tasks that do not come naturally and/or duties never completed before: cooking, cleaning, yard maintenance, finances, etc.
We had a meal delivery service bring food to our house and I had to learn how to cook while my wife took care of herself, I’ve had to learn how to get professional help with things like cleaning. But there is only 24 hours each day to get everything done. I don’t spend as much time exercising or working out because I feel like I need to be home helping my family.
Tayvon*
Children of caregivers are affected, too.
My son was in college when my husband was diagnosed with cancer. He would drive back home often—getting lots of speeding tickets—to see his dad, until he finally had to pull out of college for that semester.
Asari*
Caregiving is a team sport.
In hindsight or having done so themselves, each caregiver encourages others caring for someone with cancer to ask for help. Chris remembers friends, family, and even acquaintances offering to help, but not wanting to admit his vulnerability by accepting. He strongly suggests “coordinating and reaching out to the right people at the right time for the right things: empowering family and friends to be involved.”
His football metaphor: “Caregiving is a team sport which you need to learn to play. You should think of yourself as the quarterback throwing passes and engaging the team (your friends or family) instead of running the ball yourself on every play.”
Case Keenum showing caregivers how it's done with the Minneapolis Miracle!
Chris continues, “I had this friend who brought his family over to help out. He looked past my wife, who had cancer, and said, directly to me, ‘I am here to serve you.’.” Chris was amazed.
Are you a caregiver? Do you know someone who is currently a caregiver?
Reach out for help or help someone today. We’ll continue the conversation in part 2 as we explore personal and relationship changes as well as local and national resources for caregivers.
*Names have been changed to protect confidentiality.
Are you new to cancer caregiving? Do you know someone who is? When cancer strikes our loved one, we caregivers instantly begin playing a role we've never played before. Cancer impacts every aspect of our life. We get no training, no chance to get good at it first. We just start playing the game!
The Beginner's Creed
By Peter J. Denning (Adapted to caregiving by Jack's)
I am a beginner.
I am entering a new game about which I know nothing. I do not yet know how to move in this game. I see many other people playing in this game now. This game has gone on for many years prior to my arrival. I am a new recruit arriving here for the first time. I see value to me in learning to navigate in this domain.
There is much for me to learn: The basic terminology. The basic rules. The basic moves of action. The basic strategies.
While I am learning these things I may feel various negative reactions: Overwhelmed at how much there is to learn. Insecure that I do not know what to do. Inadequate that I lack the capacity to do this. Frustrated and discouraged that my progress is so slow. Angry that I have been given insufficient guidance. Anxious that I may never satisfy all the expectations of my loved-ones. Embarrassed that everyone can see my mistakes.
But these moods are part of being a beginner. It does not serve my goal and ambition to dwell in them.
Instead, if I make a mistake, I will ask, "What lesson does this teach?". If I make a discovery, I will celebrate my aha moment! If I feel alone, I will remember that I have many friends ready to help. If I am stuck, I will ask for help from my teachers.
Over time, I will make fewer mistakes. I will gain confidence in my abilities. I will need less guidance from my teachers and friends. I will gain familiarity with the game. I will not cause breakdowns for promises I lack the competence to keep. I have an ambition to become competent, perhaps even proficient or expert in this game.
But for now, I am a beginner.
I am entering a new game about which I know nothing. I do not yet know how to move in this game. I see many other people playing in this game now. This game has gone on for many years prior to my arrival. I am a new recruit arriving here for the first time. I see value to me in learning to navigate in this domain.
There is much for me to learn: The basic terminology. The basic rules. The basic moves of action. The basic strategies.
While I am learning these things I may feel various negative reactions: Overwhelmed at how much there is to learn. Insecure that I do not know what to do. Inadequate that I lack the capacity to do this. Frustrated and discouraged that my progress is so slow. Angry that I have been given insufficient guidance. Anxious that I may never satisfy all the expectations of my loved-ones. Embarrassed that everyone can see my mistakes.
But these moods are part of being a beginner. It does not serve my goal and ambition to dwell in them.
Instead, if I make a mistake, I will ask, "What lesson does this teach?". If I make a discovery, I will celebrate my aha moment! If I feel alone, I will remember that I have many friends ready to help. If I am stuck, I will ask for help from my teachers.
Over time, I will make fewer mistakes. I will gain confidence in my abilities. I will need less guidance from my teachers and friends. I will gain familiarity with the game. I will not cause breakdowns for promises I lack the competence to keep. I have an ambition to become competent, perhaps even proficient or expert in this game.
But for now, I am a beginner.
Jean Accius, PHD, PMP
Dr. Accius is a senior executive and nationally recognized thought leader on aging, health and long-term care policy.
So Jean, what's one super interesting thing about you?
I am a Tri-sector athlete having worked on caregiving issues and system change at the federal and state level, in private industry and also in the non-profit sector.
What's the most important thing people need to know about AARP?
AARP was founded by Dr. Ethel Percy Andrus, a high-school principle, who went looking for her friend, a retired teacher, and found her living in a chicken coup. Her friend was living in poverty in a shack with no windows. Outraged, Dr. Andrus created AARP so everyone could age with dignity, purpose and independence. This July we will celebrate 60 years as an organization following in the footsteps of our founder.
In your research you've determined that 78% of men who are caregivers report having no help from others - why is that statistic so important?
Caregiving is tough and the stress associated with caregiving can overwhelm any person. However, to have no help from others magnifies the stress. These men who are caregivers with no help from others are more likely to be socially isolated, which is equivalent to smoking 15 cigarettes a day. It’s literally bad for your health. They typically don’t have any time to care for themselves; grab drinks with a buddy or just be still.
What triggered AARP to engage with Jack's?
Jack's is such an important organization and support system for male family caregivers. We wanted to highlight Jack's as a model and a way to empower and encourage other men to talk about their experiences and even their fears.. to showcase that while the caregiving journey can be tough at times, there are moments that are rewarding and that you don’t have to do this alone. There is a band of brothers, if you will, that you can lean on when times get weary.
Men typically don’t want to talk about the emotional, financial and physical aspects of their caregiving experience. We wanted to raise awareness among male family caregivers so they knew that they were not alone in their caregiving journey. In fact, there are over 16 million male family caregivers.
For so long, we’ve talked about the “typical” family caregiver but that is changing. We wanted to disrupt and change mindsets and societal perceptions about caregiving. It is my hope that men will get the support they need and embrace the fact that asking for help is not an act of weakness but an act of strength.
At Jack's we strive to deliver world-class hospitality to men who are cancer caregivers, what does hospitality mean to you?
My undergraduate degree is in hospitality administration. Hospitality is about putting others first and creating meaningful experiences that improve their quality of life.
For a deeper dive with Jean, please enjoy his recent white paper!
"Breaking stereotypes: Spotlight on Male Family Caregivers"
| breaking-stereotypes-spotlight-on-male-family-caregivers.pdf |
Recently Aaron emerged from our Axe Like a Bad Axe Workshop as the supreme victor. We visited with him to learn more about him and how he pulled off this incredible feat.
So Aaron, what's one super interesting thing about you, and where's home?
Home is St. Louis Park. I have lived in New Orleans, Chicago, and San Diego as well. But the Twin Cities feels like home to me. I once took second place in a tough man competition, ran a 1/2 marathon, and won an organized debate...within 16 hours of one another.
If cancer caregiving is a journey, where would you say you are on yours?
I feel like Columbus must have felt. Continuing the metaphor, I know the Earth is round (so hey, there HAS to be a way, right?)...but have no idea what I am sailing into. I have what can be deemed "convictions" as to the outcome (we are midway into radiation with good prognosis), but I suffer from what is sometimes termed "Knightian Uncertainty" - I simply do not know what I do not know about how this will all turn out.
How would you describe the Axe Like a Bad Ass Workshop? What other Jack's programs have you participated in?
The Axe like a Bad Ass Workshop was clearly the single most important tournament in the history of the world, and I just happened to be victorious. I won it ALL baby. But seriously, it was the pleasure of learning a ridiculous, absurd, totally irrational activity in our break-neck era of progress and technology, and I think we all loved every second of it.
I also participated in Ice Fishing, which was a blast...basically an excuse to stare at a bobber and drink beer. There was also the meat cutting workshop as well. Super educational and fun.
The moment you realized you had officially smoked every other Axe thrower there, what sort of thoughts ran through your head?
(Insert boilerplate proathletespeak) "Well guys, I just have to thank the other players, they were just great today, and I just was lucky I guess, aw shucks wish we all could have won". Ok, maybe not that...I was just happy that we all could have some unapologetic fun for zero reason. Winning was irrelevant (unless you lost...which you all did.). :-D
Clearly to emerge victorious you must have trained for thousands of hours, in grueling conditions, under the tutelage of an axe throwing master. Can you talk about that process and how challenging it was? Was your Sensei one of Paul Bunyan's descendants? And did he/she ever make you do the axe throwing version of wax on and wax off?
Its funny you ask...I actually trained in Svalbard with some locals. We threw axes at the flying dragons who inhabit the volcanoes. No wait, that didn't actually happen. I think most of my "skill" can be attributed to the relaxing atmosphere and having some time to just let go of reality for a little while. That and the fact that I am physically perfect and the pinnacle of athleticism.
Do you think it's important for guys in your situation to get together and hang out? If so, why?
No human in our position could have exited Bad Axe and thought "what a terrible idea and I shall never do these types of things again". Jack's itself is essential for taking the logistical reigns and facilitating the entire process of unwinding. I alluded to Columbus's journey in a previous question...its good to have shipmates who are in the same boat, facing similar prospects, dealing with similar fears. So second star to the right, gentlemen, and straight on til' morning...
Meat Travis Robertson, Our Meat and Axe Throwing Workshop Champion
So Travis, what's one super interesting thing about you, and where's home?
Proud owner of over 5,000 Christmas songs ranging from classic to reggae to hip hop. I’m originally from St. Louis Missouri (Go Cards!) but have lived in Minnetonka for more than half of my life.
So if cancer caregiving is a journey, where would you say you are on yours?
In the thick of it. My wife Katie has stage 4 breast cancer that’s metastasized around her lungs and on her brain. Because the first treatment plan was unsuccessful, Katie just started a new treatment plan three days ago. Shit is getting real, my friend. That said, we’ve got amazing doctors, friends and family – and Jack’s too—who are helping us manage this very bumpy road. We call our family Team Robertson, and we’ve had some of the highest highs and lowest lows in the past 6 months. I’m an optimistic person and so is my wife, so we’re ready to fight like hell to keep the Team intact for as long as possible!
Can you describe the The Meat Workshop? How did you come up with the idea?
It’s an epic chance to learn from an expert of all things Meat! Dr. Ryan Cox is a PhD at the U of MN who has a lot of knowledge to share, and he’ll be schooling us on all the different cuts of meat. So, when you go to a restaurant or go grocery shopping, you’ll be more informed about what you’re choosing. This workshop event originated from a group I started with my friends a couple of years ago called “The Gentlemen’s Workshop.” Every month, we would put on monthly events to get us guys out of the house while learning something new (e.g: ice sculpture carving, knife fighting, scotch tasting). Partnering with Justin at Jack’s, we wanted to bring a new type of programming to Jack’s in addition to the hunting and fishing events. Hopefully, our fellow Jack’s participants think this direction is a worthwhile one going forward.
At Jack's we strive to deliver world-class hospitality to men who are cancer caregivers, can you talk about what hospitality means to you? And what sort of things did you do to make sure you brought that hospitality to the Meat Workshop?
To me, hospitality is about being empathetic and anticipating what someone needs, even before they know they need it. Whether it be providing money for parking, a cooler for taking home your cuts or hosting a happy hour afterwards, I believe we’ve anticipated many needs along the way. Caregivers like myself have a lot to juggle all week so hopefully events like the Meat Workshop are a nice reprieve from the whirlwind of life.
The Meat workshop was your first crack at leading a Jack's program, overall how did it go? What surprised you about the experience?
For me, planning it has been a blast! It’s fun to plan something for other caregivers and see what the response will be to an unconventional idea like a Meat Workshop. What always surprises me about Jack’s is how we think through every detail from start to finish of an experience. Hopefully we made this day one of the most effortless times of their week, given all that they’re dealing with as a caregiver.
What do some of the other program events look like that you are bringing to Jack's later in the year? Which one are you the most excited about?
Can you keep a secret? We’ve got some fun surprises up our sleeve. The idea is for each event to be something that makes you say: “Man, I’m glad I did that. That was epic.” While we’re still finalizing the events, we do have some starter thoughts: The Classic Car Road Trip, Exotic Cooking Class, Axe throwing, and Ice Sculpting with chainsaws. Each event will be incredible in its own way, but I’m most intrigued about the Classic Car Road Trip where we get to pick out a vintage car to drive for the day as a group.
By Travis RobertsonHis next adventure is on May 6th at the world's biggest urban axe throwing club, it opened in late 2017 at a size of 8,000 square feet. Bad Axe's mission is to bring the thrill of a traditional Canadian backyard pastime to urban communities. Learn more at Bad Axe Minneapolis. |
| If you'd like a copy of our Axe Throwing Workshop flyer you can download it here! |
| ||
| Feel free to follow, like, mention, and tweet at us. Or maybe you just wanna drop us an old fashioned email. Just don't spend your entire life staring at your phone, that's just tacky. | |