I am occasionally reminded:
You do what you can do.
Life is to be lived.
On good days, go like hell.
Thanks to brother Jim, caregiver to wife Mary for almost 30 years - my mentor.
It is What it is...
April 11, 2011 Dan was diagnosed. Like your birthday, your anniversary, Christmas, it's a day you never forget! We sat in the doctor's office totally unprepared for what we were about to hear. We were numbed. His, or I should say, our life changed. He had no symptoms - no pain, no fatigue, nothing that would indicate that he was unwell - just a blip in his blood work.
At this time in our life we had a bottle of aspirin in our house, saw the doctor for annual check-ups, regularly working out at the gym, enjoying the outdoors, hiking, gardening, traveling, playing with the grand kids and eating well.
BUT, those 3 words: MYELOMA, CANCER, INCURABLE, immediately elicited a jumble of emotions and a million questions: How can this be? What is this? How did he get it? What is the prognosis? What stage is he at? How long will he live? What is the treatment? How and where do we go to learn about this? I was frightened. I was angry. I was sad. How would I ever cope with what I was hearing?
You Do What You Can Do...
As a mother I handed my children to the doctor for shots, stitches, bumps and bruises, and I left the room. I didn't like needles. I didn't handle bloody issues well. During our first summer with multiple myeloma all that changed. Dan got shingles! Open, oozing abrasions! Somehow, "Nurse Brenda" swung into action. With a few questions and a lot of luck, I learned on the job. I cleaned and dressed open sores, kept everything as sterile as possible, constantly monitored temperatures and doled out pills, pills and more pills. In addition there were doctors appointments to arrange, transportation to manage and household tasks that we shared to attend to while trying to get a handle on the complexities of this disease. I was completely overwhelmed.
It was at this time that I began journalling. It gave me a sense of order and some control over what I was confronted with. I admit to being a "structure freak". But even more important, it enhanced my confidence and ability to communicate with medical staff by having facts in hand while in a highly emotional climate. To this day I continue this practice. Daily, I log results of blood work, the numerous physical challenges that have come during this journey, emotional well-being, medications, side effects, and activities participated in. Prior to an appointment we summarize these findings and go prepared for meaningful discussions.
In our search for knowledge and support we happened upon the Myeloma Canada National Conference in Ottawa. What better place to become informed and meet like-minded people than at a National Conference. Sessions educated us on the current status of the disease, on-going research and development of new drugs and treatments, testimonials from peers and HOPE.
Returning home, I joined and continue to be active in our newly formed local support group. Resources and knowledge along with friendships and "good ears" are invaluable. Knowing I am not alone , having my thoughts and feelings validated by other caregivers, and gaining insight into what might be ahead has enabled us to put some strategies in place to avoid future crises and stress.
Mobility has become an issue with Dan. Our home of 43 years was all stairs. Previous knowledge of this possibility and memories of running up and down stairs during his shingles episode convinced me that physically this was going to be challenging not only for him but also for me. Although it had never been in our plans, we began to discuss downsizing and now we enjoy a much more manageable and comfortable life in our condo.
Life Is To Be Lived...
"If you don't take care of yourself, you'll end up unable to care for the one who needs you."
When I first started on this journey I had no idea what lay ahead. I felt it was my responsibility, my job, to handle this. Why? 47 years ago I vowed "in sickness and in health" and we'd come this far. Early on it became evident that caregiving was taking its toll physically and psychologically. I wasn't sleeping well. I was worrying excessively (finances, health care, all the other things I'd never dealt with). I felt inadequate, guilty and unprepared. I was withdrawing from family, friends and things I enjoyed. I felt lonely, frustrated, frightened and angry that I'd been dealt these cards and I wasn't prepared for any of this, nor did I want to be.
During a conversation with a member of the support group I discovered I wasn't alone. Sharing thoughts, feelings and experiences made it obvious to me that I was having a major "Pity Party". I needed to get a life for myself if I was going to be of any use to Dan. I realized that I didn't have to go through this alone. Family and friends were sincere in their offers of support. I needed to learn to accept them. Dan didn't need me all of the time. Once again I've found time to enjoy things I'd let go. I go to the gym, walk regularly and meet friends for lunch. I've found joy in quilting once more. I've rejoined my church. I realize the importance of taking a break, exercising, keeping in touch, sharing my concerns, accepting help, taking care of myself and connecting with other caregivers. Occasionally I still have feelings of despair but I accept them as part of who I am in this journey.
On Good Days Go Like Hell...
We continue to challenge our "Bucket List", albeit somewhat modified. Initially, we continued to spend summers at the cottage, go on a riverboat cruise, visit the polar bears on the tundra and spend time with family in Calgary, Quebec and Kingsville. Not all were without their challenges, but funny, we only remember the good times. Today our outings are closer to home - time spent with family, grandkids hockey and soccer, drives to visit local parks and nurseries, local theatre and shorter stays at the cottage (a more leisurely pace). But alas, Dan speaks of one more grand "kick": the Scallop Festival in Digby, Nova Scotia this August. We're keeping our fingers crossed.
Daily I seek strength, wisdom and guidance to "do what I can do" because "it is what it is".