journaling my caregiving experience

Why is it that men have such a hard time asking for directions when they’re lost? I mean, this is a question that has plagued me all my life. I can remember sitting in the back seat of my father’s care listening to my mother’s relentless nagging. “Irving. There’s a gas station. Why can’t you just pull over and ask for directions?” He never did. We always got where we were supposed to be going, but it was always an adventure. I suppose having GPS available in every car has taken much of the drama out of family trips these days.

It seems to be the same way with men needing help with anything. My husband Steve always tried to assemble things without looking at the enclosed instruction sheets. Why do men attach so much shame to asking for help?

Which leads to my real topic: How do you get men to reach out for support when they are faced with caregiving or patient challenges? As I came to find out, the sheer relief of sharing my reality with other caregivers gave me enough strength to carry on for as long as needed. It turns out, I still have that need. My partner of twenty-six was diagnosed with lung cancer in March of 2005, a diagnosis that came out of a CT scan that was taken in the emergency room where he was admitted for acute peritonitis. He was in an induced coma for five days, and when he came to he asked me to marry him. I told him to ask me again in three days, once his head had cleared. He had no idea how close to death he had been until a follow-up visit with our physician, when the doctor told him, “Steve, you were circling the drain.” During that same visit, we were told the scan that had shown them the peritonitis also showed he had lung cancer.

There were several surgeries that year and we were married somewhere in the midst of them all. There were many subsequent scans and tests and we had been told it was just a matter of time before there would be more cancer. Sometime during 2008, Steve’s mother was diagnosed with lymphoma – she was 89 at the time. We had her move in with us and I was now taking care of two cancer patients, since even though my husband’s cancer had not yet reared it’s ugly head again, we lived with the threat of it every day.

I am a veteran of Twelve Step programs and was quite accustomed to reaching out, from both sides of the aisle, but it took quite a while for it to dawn on me that there might just be help for caregivers online. Once I “surrendered” to the idea there might be relief out there, I couldn’t stop looking for it. My mother-in-law had been living with us for over a year when I had finally reached my bottom, and she was a sweetheart. There was absolutely nothing left in my life that seemed to be about me.

So first I started writing in an online journal. Day-to-day happenings. A record-keeping system if nothing else. Little by little, I started to let personal things creep into my work. So I looked for a place where I might make the move from monologue to dialogue; and soon thereafter, dialogue to group. The beauty of all this was, it was anonymous. I could bare my soul and no one would know who I was unless I sought to make it that way. Now I can understand that men – being the strong, silent sex that they are – fear showing weakness or need. But, there’s the bit about anonymity that makes that fear unrealistic. You can find places where you can write of your innermost fears and sorrows, share them if you wish, and never worry about being judged. The only person who knows who you are is you. You just have to take the first step and accept that maybe, just maybe, sharing these innermost feelings will be the liberating factor that makes the tough stuff easier to bear.

I have followed men on many discussion boards I’ve visited. They’ll ask a question, get any number of replies and take the bait. They see that they’ve gotten replies from other men – one’s who are willing to share. They might have been nagged into going, but they slowly visit and re-visit these discussions and find a home. They literally make a name for themselves––a screen name––that others come to recognize and respect and seek out for advice. Aha! A vestige of power has been restored. It’s a place to feel valued. I asked some of these men, who had lung cancer and were in treatment, to be my friends and let me email them with honest, hard-to-answer questions. I let them know they could tell me anything. Once they become engaged with a situation and get a feel for it and you, a sense of trust enters into what is becoming an online relationship. Why is it then that so few men are willing to try this out?

TreatmentDiaries is a website that was specifically designed to engage people living with any health condition and their caregivers in diarizing; anonymously notating what was going on in their daily lives. The site is succeeding in attracting men, including male caregivers. BreakthruGrief is another site targeted at men––bereaved men––and does it in anything but an anonymous manner by videotaping an interview with Len Heisler, the site’s founder, and men who volunteer to share their own personal grieving process on camera. There are happy mediums. You don’t have to be a completely unknown entity if you don’t want to, but if complete privacy is what you need in order to be comfortable sharing, it’s there to be found.

I know what the power of writing can do for both caregivers and their care recipients. I dearly wish my husband had taken advantage of the sharing platforms that were available to him; both as a caregiver to his mother (which he sometimes was) and as a cancer patient. I’m standing by my feelings by founding The Caregiver Space. It’s a place to be private or public; to be solitary, join a community or form your own. My dearest hope is that you will find comfort in writing it all down. Every last feeling.

Written by Alexandra Axel
Alexandra Axel was the first founding staff member at The Caregiver Space. As a New York native, Allie grew up people-watching and story-collecting, eventually pursuing her undergraduate degree from The College of New Jersey in sociology and creative writing. At The Caregiver Space, she worked with social media, graphic design, blogging, and program development to brand and grow an online community composed of, and focused on, caregivers. From the seedlings of an idea to the thriving community that it is today, Allie was there from the beginning to support the evolution of The Caregiver Space. Allie enjoys writing poetry and short fiction, devouring books, biking, crafting, urban agriculture and imperfectly cooking. She currently resides in Brooklyn with her pup, Hen.

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2 Comments

  1. Just this week a husband in our city wanted to grant his wife her dying wish, to die at home… She was in a nursing facility and Hospice, if he brought her home would only be there 3 times a week….she needed some nurse care daily….so this loving husband put an ad in the local paper, requesting help from local nurses…in just one day, a whole city of angels stepped up….she comes home this week….sometimes wishes are granted, and husbands will do anything for the love of their life, her last wish, to die at home

    Reply
  2. Good question.

    Society tells men that to be “real” men you have to do everything on your own.

    That as men we can’t ask for help because that will make us look weak.

    It wasn’t till many years into my caregiver journey that I asked for help from my friends and fraternity brothers.

    I wish I would have asked for help earlier on. Maybe my suffering would have been eased a bit if I did?

    Reply

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