Monthly Archives: July 2017

July 27 – Life with a Caregiver

by Judy Alter

Much is written about the hardships and dedication of caregivers, and I am the first to applaud them. Been there, done that with my mother who slid into dementia in her eighties, and I don’t feel I did it as gracefully or kindly as I should have. But now my daughter is my caregiver, and I thought it time to share the other side of the story, along with some of what I’ve learned, I hope, about being a gracious recipient of care.

About a year ago the pain in my left hip got to the point that I rarely walked. I lived on a Rollator, a walker with a seat and wheels, I had hip revision surgery. My hip had been deteriorating for years and had a severe deformity.

I was unable to care for myself, and the burden fell on Jordan, my youngest daughter. By the time of my surgery, I was living in a cottage behind my house, and Jordan, her husband and son were and are living in the house..

I was selfish and demanding. When you’re deep into pain, it’s hard to think about much besides yourself. I greeted her with a list of needs and wants, until she gently (well, usually) suggested that I let her sit a minute before hitting her with a list.

I’ve learned to remember I am not her only responsibility. She has a husband, a child, a career. I learned not to be critical when she came home from the store with the wrong items. And I learned that sometimes she is tired and needs comfort as much as I do.

I try to give as much as I take, to make her family glad that I’m close. A cheerful attitude requires growing beyond self-pity. I’m happy when I’m included in restaurant plans and parties, but I respect that they need some time to be a family. And I’ve learned to treasure my solitude (in reasonable doses).

These days I’m about 75% self-sufficient. I tend to my personal needs, cook my meals, dress myself, and work at my desk, keeping my writing career alive. I entertain, often for a happy hour with heavy hors d’oevres, though Jordan fixes a mean antipasto platter a lot, and I dine out with friends who are good enough to fetch me. I cannot walk unassisted, nor can I drive.

As Jordan said, we have become more like roommates than mother and daughter. But we have worked hard at it and had some spectacular squabbles along the way. For instance, we enjoy our shared shopping trips, as long as my list isn’t too long and her time not too short. Stars shine in her crown. I’m grateful for the love and continuing care of all my children, but Jordan is a rare gift.

An award-winning novelist, Judy Alter is the author of several fictional biographies of women of the American West and now has turned her attention to the late nineteenth century in her home town, Chicago, to tell the story of the lives of Potter and Cissy Palmer, a high society couple with differing views on philanthropy and workers’ right. She blogs at http://judys-stew.blogspot.ca/

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July 10 – Garibaldi

by Marilea Rabasa

The summer of 2007 was difficult for me personally, and Gene thought it would be good for us to get away and distract ourselves, seeing one of the most spectacular sights in British Columbia. But he wanted to surprise me.
So on the highway to Whistler, Gene shouted suddenly, “Stop the car! I want to show you a beautiful lake. Drop dead, gorgeous, just like you,” planting a kiss on my cheek.

Well, he was a charmer. That’s one reason I fell for him. And I was game. What could this man have up his sleeve that would make me forget my personal troubles?

Fifteen switchbacks. I counted ‘em. It was a long way up. The trail seemed to go for a mile one way before it mercifully switched back in the other direction.
And we were backpacking. Up a mountain. With full loads.
About halfway up, tired and irritable, we decided to lighten our loads by eating our hamburgers.

Big mistake.

Six hours later near the end of the trail after a drenching downpour, we saw the lake Gene had promised me, and he was right. It was a magnificent visual delight to top off a grueling day. Creamy turquoise from the glacial till. Like a diamond in the desert, it was worth the hike up.

We arrived at the campsite and pitched our tent on an elevated spot overlooking Lake Garibaldi and Sphinx Glacier. Gene is a photographer and has many of his prints framed. But I would have to say that that view of the glacier from where we rested our weary bodies was probably one of the most magnificent shots he’d ever taken.

So began three days of wilderness hiking on less food than we would have liked. But food for the soul? Ah, there was plenty of that.

The next day we tackled the real focus of our trip: a demanding trek up to the Black Tusk, a volcanic neck on the shoulder of Mt. Garibaldi. We made it, got all the way up to the snow line. The snow line? In July?

We’d been living on the East Coast too long. Of course there was snow in July at high elevations! How could I forget camping in Yellowstone one summer when a blizzard nearly flattened our tent and we had to scuttle into Gene’s truck for warmth?

We trudged back down to the campsite and were delighted to accept a dinner invitation from our neighbors. They had made a huge cauldron of couscous to share with anyone nearby, and food had never tasted so good to me as it did that evening.

The next day we hiked around the stunning lake named after the mountain. Surrounded by so much natural beauty, I forgot about my problems, my physical hunger, and settled for gratitude that we had lived long enough to appreciate what was right in front of us.

Life, as with anything else, is just a matter of perspective.

Marilea Rabasa is a retired teacher and the award-winning author of her first memoir, A Mother’s Story: Angie Doesn’t Live Here Anymore. Her recovery blog is published at www.recoveryofthespirit.com. She and her partner have an orchard in New Mexico. Summers are for grandchildren and salt air at their home on an island in Puget Sound.

July 7 – Post-Injury Recovery

by Debra Dolan

Never did I imagine this recovery journey would take this long or so much from me. Post-concussion syndrome feels like an immense case of jet-lag:  where your thoughts don’t always link immediately with your words and where your mind and body feel disconnected from one another and from all around you while you struggle with exhaustion. As time goes on, with little relief, this creates much irritability. Learning how to cope is a continual process and dealing with constant head pain is a full-time job.

My rehab forces me to leave home every day and sometimes I dread the prospect of seeing someone I know and having to listen to more unsolicited advice or saying a polite, “Fine, thank you”, to the ubiquitous, “How are you?”.

It takes a tremendous amount of energy and planning to do anything in public. I return home depleted, often in tears. Although others try to be understanding, even patient, they don’t understand what is happening for me. How can I expect anyone to see it? When I look in the mirror I don’t see it either. Disabilities have usually been accepted by their visibility yet for those of us who experience an invisible one, we want you to know, “We are not crazy. We are not lazy. We are not avoiding work or social interactions. This is all we can do right now.”

I am trying to make peace with my limitations, maintain an optimistic outlook, and to understand my relationship with pain so I can stop reacting to it. Through self-inquiry and self-understanding, guided by a counselling psychologist, I am examining the unity of my body with my mind. While living with a much lower level capacity I am learning to pay attention to my personal beliefs and interactions with pain and illness so that I can function more fully.

At my core, I always knew a balanced life would serve me well and was never one to delay or to think about when I am retired, or when I have more time and money, I will do such-and-such or see this-and-that.  Make no mistake, I am absolutely saddened for the loss of what I can no longer do with friends, my love relationship, employment, and a vast array of social and intellectual interests, yet I do not sit alone with regret for what I have not done: my life is still tremendously blessed as I seek to understand its new direction.

One aspect of my pre-and post-injury life that has been consistent is my priority to write each day. The words used to come easier and the passages were longer yet I continue. A frustrating aspect is that my Internal life feels so rich with creativity and thought and the external physical reality is that it takes such effort and time to act upon it. A review of my writings, however, informs that there have been small incremental improvements to my quality of life and this gives me hope for the future.

Debra Dolan lives on the west coast of Canada, is a long time (45+ years) private journal writer, and an avid reader of women’s memoir. She has been a member of Story Circle Network since 2009.