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cancer treatment family caregiver family reunion

Don’t Give Cancer the Power to Stop the Family Reunion

It started some eighty years ago at the shore. A family got together for summer fun when they rented a cottage. Over time, the parents built a home with a big backyard, where everyone gathered. Children grew up. Some married and had kids of their own, and eventually even grandkids. Some didn’t. Some changed jobs and moved around. Some kept the same jobs over the years and put down roots. Summers drew everyone back together for cookouts in the backyard at the fireplace built by cousins, stone by stone.

My earliest memories of my grandparents, aunts, uncles, and cousins are all there. To this day, that scent of raspberry, mingled with confectioner’s sugar on powdered jelly donuts evokes the heartfelt warmth of happy family gatherings, thanks to the uncle who used to bring a brown box from the bakery every time he joined us on a summer weekend. There were group walks to the point, ice cream cones with sprinkles, lots of laughter, and relatives galore. This was the one place we all saw each other, our common ground in a rapidly changing world.

In later years, as the original cousins got on with their lives and people moved again and again, we no longer saw each other regularly. That all changed when Uncle James turned 75. His family planned a big birthday bash and invited everyone to come. What a wonderful day that was. There might have been a little sprinkle or two of rain, but I remember pine trees and people, and above all else, laughter.

The following year, my mother suggested we all gather again, this time at my parents’ home, for a reunion. This became the annual family gathering. For more than thirty years, the relatives have come to swap stories and share food.

When my mother had a heart attack several years ago, it was a shock. Despite all the previous visits to the pulmonologist for treatment of the increasing breathing difficulties, no actual diagnosis was made. That nagging shadow on her scan that signaled there was something ugly growing on the horizon, but what was it? That something was lung cancer, thanks to that genetic glitch that seems to run in the family.

My mother was devastated that over the course of several years, her cancer grew unchecked. As is the case with many cancer patients in similar straits, she was angry that it wasn’t discovered until it was inoperable. Chemotherapy, radiation, and supplemental oxygen extended her life. And with that time, she was determined to continue the tradition of the family reunion.

By then, I was my mother’s full-time caregiver, while my father continued to work. I took her to and from her medical appointments, coordinated her medications and therapies, and most of all, took on the task of helping her to live as full a life as was possible under the circumstances.

One of her most adamant wishes was that the family reunion continue. It was no small task. In a normal year, it takes me approximately forty hours over a month or so to get everything ready for the relatives — the equivalent of a full work week. As a caregiver, I had to squeeze those hours into my already challenging schedule, one that included constant trips to the hospital and medical emergencies. My mother insisted on knowing every detail of the reunion plan, determined to be involved with every decision that needed to be made, from the RSVP tally to the number of hamburgers and hot dogs we would need to feed the crowd to the coffee we would serve with dessert. She insisted on hanging onto the shopping cart and perusing the aisles of stores to gather items for the party, even as her energy flagged and her oxygen tank needed changing.

Some caregivers might have insisted on taking over, pushing the cancer patient aside, in order to get the job done quickly and efficiently. After all, when you are already caring full-time for a loved one, there’s little time for anything else. But it’s important to understand the devastating impact of cancer on “normal life”. Those chores, errands, and tasks most of us hate can sometimes be the perfect therapy for cancer patients who are terrified of what is to come. That great uncertainty that comes with a cancer diagnosis is hard for the mind to overcome; the more a cancer patient is able to stay in the game, the better.

For my mother, it was important to let her still be in charge, even through the fog of cancer treatment. After all, she and my father had invited the family to gather in their yard for more than twenty years at that point. It was their “baby”, their way of celebrating the extended family. The big question was how to make that happen even during cancer treatment.

I once had a profound conversation with a cancer friend/survivor/advocate that brought that point home to me. She said her siblings began to count her out of family discussions about the future because they didn’t believe she had one. Imagine how that makes a cancer patient undergoing treatment feel. It’s like the kiss of death. You’re already assuming the fat lady has sung her last aria. (By the way, that very same cancer friend/survivor/advocate is still going strong, still smart, and still more than ready to set the record straight. I’m so glad I know her.)

Another very valuable lesson I learned from my mother was that even the simple act of making decisions about the reunion kept her feeling positive that she still had something to give to the world. She could still bring people together to celebrate what matters in life — the family. For someone whose health is precarious, the sense of weakness and helplessness can be offset by positive successes. For my mother, the reunion proved to be an achievement of which she was proud, a joint effort with my father.

Just pause for a moment and think about this. She was in active cancer treatment. She was easily fatigued and vulnerable to hideous side effects. Most people would think that the best course of action would be to avoid the stress of the reunion, to pull the drapes and shut the door. After all, it’s too much for a cancer patient to handle, isn’t it?

To this day, I still remember my mother sitting on the patio, watching the reunion tent go up. She wore one of the many chemo caps I made for her, her oxygen tank at her side, and in those moments, she was delighted by what she saw. Tables and chairs came out of the barn and went under the big top. Tablecloths were spread out and paper plates, cups, and plastic forks, spoons, and knives were set down. My father made his usual run to the ice house for huge blocks of ice for the soda, beer, and meat coolers.

Chemotherapy can be a real beast, but my mother worked with her oncologist to make sure that her treatment allowed her to be as functional as possible. They scheduled her medication so that she would be at her best on the day the extended family arrived. Unfortunately, she was laid low with a sudden bout of intestinal upset that first year with lung cancer. Much of the day was spent in bed. I checked on her frequently as the guests mingled outside. Far from being distraught, my mother was surprisingly calm and content. Even as she felt “crummy” physically, she was happy that she managed to make one more reunion happen. To her, that was her crowning achievement, something she shared with my father. In this day and age of separate lives, they brought us all together for a day, to remember our roots.

On that second reunion after her lung cancer diagnosis, my mother was feeling much better. I still can see her sitting on the patio, with people gathered around her. Still tethered to her oxygen tank, she had a ball catching up with everyone. Despite the fact that she couldn’t walk far, the constant stream of people coming and going, pulling up a chair, put her right back in the action. For that moment, cancer took a back seat. Mama was once again in charge of her own life and there was much laughter.

We occasionally forget over time what family means to us. We stop discovering and rediscovering ourselves and each other. We presume to know what other people are thinking and feeling and don’t bother to ask. Family reunions are an opportunity to connect and reconnect with relatives we may only see once a year. For that one day, when we take advantage of the moments, we can recall those who are no longer with us, not by forgetting, but by remembering. We can watch children grow into adults. We can put aside opposing politics and philosophies to find what we have in common. On that one day, we’re all people united by the generations that came before us.

Even now, my father still looks forward to bringing the family together for that one day a year. He still spends hours tending to the yard and the pool in anticipation of the relatives’ arrival. He doesn’t do it to be a super star. He does it because he remembers what he got out of those days with his own parents, siblings, and cousins at the shore so long ago. He does it because he remembers those people no longer with us. It’s his way of preserving family.

Someone recently suggested we end the tradition. Thirty years is long enough. It’s time to move on. Not all of us feel that way. There are still those among us who want to honor that legacy my mother and father gave to us, the chance to get together for one day out of the year and remember we are connected. Time passes. People pass. But one thing we should never lose sight of is the power of family. Don’t let cancer steal that from you and your loved ones. Work around the obstacles and come together, with hearts that seek laughter and love. While the storm clouds accumulate on the horizon, gather under the canopy of the family tent and celebrate what is here and now, because the memories you form today are the treasures you keep in your heart tomorrow, come what may.

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advanced breast cancer breast cancer cancer caregiver caregiver education caregiver psychology family caregiver ovarian cancer

Can We Improve How Men Provide Care to Cancer Patients?

I’m a big believer in men. They can do some amazing things. Lord knows they’ve achieved some wondrous feats in life. But when it comes to being cancer caregivers, let’s just say the jury is still out on that, especially when it comes to women and “intimate cancers”, like breast, ovarian, cervical, and even colon. Nothing breaks my heart more than to hear a group of breast cancer survivors talk about the rejection they experienced from the men in their lives. It makes me want to go out and rattle some cages, asking, “What the $#@&* is wrong with you? How could you do that to her? Don’t you know how fantastic she is?”

Why is this? I have my own theory. We are, by nature, sexual creatures. We imagine, we fantasize, we dream of those perfect moments on some sun-drenched beach in the middle of nowhere, where wrinkles and cellulite don’t exist and “close encounters of the flesh kind” lead to wild and crazy passion, legs up in the sand. Real life very often doesn’t look like that. Emotions can get messy, especially when cancer’s involved and there’s great uncertainty in prognosis and diagnosis.

As a family caregiver, I’ve seen both sides of the story and I’ve reached a conclusion. Men are capable of doing more to really support the women they love and women need to appreciate that men provide that care differently. What does it take? Education on both sides. Best time to do it? At the beginning, in the early days of treatment.

Men need to know what the women they love are facing. How do they get that information? Let’s be honest. Most guys aren’t going to go to support groups to sit around and listen to emotionally-charged conversations about cancer. By nature, men tend to be proactive when it comes to problems. They’re constantly on the prowl for fixes. Cancer? Not always turned off at the flick of a switch. You can’t do X and be sure you’ll get Y as the result. You can knock your head against that tumor till the cows come home and you won’t put a dent in it. While most men are action-oriented, cancer support for women is often far more emotion-oriented. It can feel like oil and water mixing. Someone’s bound to slip on that slick and get hurt.

Men often process information and situations very differently than women do. Maybe that’s our biggest mistake as women, that we assume if men really love us they’ll do things our way, to please us. As someone who used to work with male psychiatric patients, I can assure you that it’s a hurdle not really worth the effort. The human brain is what it is. It’s wired as it’s wired. You can’t suddenly change the system. If the connectors and receptors in the brain don’t work that way, no amount of wishing will change that. Men are what they are, just as women are what they are. Your relationship up until cancer hits is pretty much what you might expect through treatment. Some men are talkers, but most aren’t. If the man who loves you does for you, you can probably go on expecting that. But if the man you love tends towards narcissitic behavior, if you have to fight your way to the mirror every morning, cancer’s not going to improve that, and your body image is probably going to take a hit over it.

We can and should take advantage of the way men tend to think to improve how they care for the women they love. I know a lot of men who are “hunters”. They may not sit around talking about their wives and girlfriends going through cancer treatment, but they will and do go on the Internet in search of information and answers. They will and do read personal accounts that provide a lot of technical information and concrete advice on what to do and how to get through it. Men need proactive tips and encouragement for helping their wives and girlfriends through cancer.

In other words, maybe it’s time we “train” men to be cancer caregivers according to their learning styles. Perhaps by taking an overwhelmingly emotional approach, we’ve failed to tap into the strengths that men can and will bring as cancer caregivers. Men are, by nature, usually good at “survivor” mode. They are body-observant. They eat, sleep, and hunt for what they need to live. Cancer is a very emotional disease and very often our introduction to it is chaotic and confusing.

What if we could reach out to men in the early stages of providing care and help them to find concrete ways to do it, ways in which they can make a positive difference for the women they love? I’ve had more than one man tell me over the years that women should never pay as much attention to a man’s words as his actions. Men will often say what women want to hear in order to get what they want. In cancer care, that’s not always a smart move. Women can feel tremendously betrayed when the words are hollow and empty.

In my conversations with men over the years, I’ve drawn a conclusion that may come as a shock to any woman who has felt her man didn’t care. Men care profoundly, deeply, sometimes even madly about the women they love and even the women in their families. But cancer makes men feel utterly powerless, and men don’t normally do “powerless” well.

I’ve seen that frustration up close with a man whose sister had a double mastectomy. His anger, his rage at what she went through in battling the disease was close to the surface. I could observe how raw this wound was for him. Why? Because he was so used to being a protector, the big brother who always looked after his baby sister. There was little he felt he could do for her as she faced this nasty foe. This caring, compassionate, strong man didn’t have the tools he needed and it infuriated him. It wasn’t that he didn’t care, it was that he cared so much, it was overwhelming. What happens when men have a much more intimate relationship with the women they love? What happens when husbands and boyfriends face that same powerful wall of emotions? Very often, as a matter of self-preservation, they turn off their emotions and just move on automatic pilot. That can come across as cold and unfeeling when the truth is they care too much to let it out.

I’ve heard women express their disappointment in how husbands, boyfriends, and even male relatives deal with their cancer. I definitely get it. Every woman wants to believe that no matter what happens to her, the men she loves will stand by her through the battle. So, how can we make that happen better?

Maybe we need to dispense with the myth that men and women aren’t equal as family caregivers. Just as male nurses and female nurses are equally capable of providing quality care in the medical setting, and male and female physicians must handle the same physical patient issues with equal competency, there’s no reason men can’t be wonderful caregivers. I still think that the style of care tends to be different, with some basic shared traits. Just as we used to assume that all women make great mothers, cooks, and homemakers, we have learned that’s not the case. Women aren’t born to be good with kids. It takes experience and education. Many of the women in my generation grew up taking care of siblings, neighborhood kids, and even worked jobs as teenagers that put us in the position of having to cope with runny noses, wayward children, and unexpected disasters (Lord knows I’ve pulled my share of kids off of roofs and stopped some of the world’s dumbest stunts just before that final idiotic ride off the ramp). We tend to forget that we learned how to care for the people around us. By the same token, I’ve known some women who were absolute disasters as caregivers. They were so anxious about their own needs, they weren’t capable of nurturing another person. A good caregiver is strong, with a thick skin, a hard head, and able to weather the storm, but you get that way by training, not by chance.

What does it take to be a family caregiver? Education, not estrogen. An understanding and an appreciation of what men and women can and can’t do. We should utilize men in the caregiver situation according to what we can teach them to do better. And we should recognize that, while they have strengths that can and will support women with cancer, they are not going to suddenly sprout wings and turn into cancer angels.

One of the things I always try to emphasize as a caregiver educator is that every patient needs to bring a team to the caregiver table. Every member of the caregiver team is going to be different from the other people involved, and folks will bring what skills they have to the table. The trick is to use the raw ingredients to make a complete meal, and that often means gaining new skills as you go. It’s important to recognize that every patient is different because of diagnosis, prognosis, energy level, independence level, emotional quotient, and a myriad of other factors. But if we begin to understand how to teach men to be better caregivers, not by trying to turn them into the female equivalent, but by using them in ways that make sense according to their capabilities, we should be able to produce some amazing male caregivers. It’s all about bringing out the best in the men who will care for these women with cancer.

Bottom line? We have some amazing wives, mothers, sisters, cousins, neighbors, and friends who have the capacity to survive cancer, and we should all strive to make the quality of their survival the best it can be. There are a lot of good, decent men out there who feel completely lost in the cancer fight. We can and should give them directions on what they can do better to support the women they love, through educating them in ways they can utilize to connect physically, mentally, and most importantly, emotionally. There will always be men and women who live life superficially, who can’t get past the scars, but for those people who hold promise as cancer caregivers, let’s empower them.