Julie and I were driving home from a breakfast get-together with old friends. We had a pleasant visit, but it seemed like she was miffed about something. Eventually, it came out. Our friends wanted an update on Julie’s cancer treatment, and Julie felt that she should have had talking rights on the topic. Instead, I added some facts here and there, partly because my medical background clarified the information and partly because I was trying to lessen the burden on Julie. The road to hell is paved with good intentions. How was it that my good intentions were so misunderstood?
Generally, I don’t need to prove my point, but I want the other person to know where I’m coming from. I don’t believe in mind reading in a relationship; I’m happy to tell someone why I did or said something or how I feel about their behavior. I told Julie I didn’t intend to take the spotlight off her and described my rationale. However, as the words came out of my mouth, I had an epiphany. This wasn’t Julie’s cancer; it was our cancer. I’m not implying that I had the tumor, surgery, or post-operative care. However, her illness has impacted our entire family, and it has impacted me. As her primary caregiver, I am affected on multiple levels as we go through this cancer journey.
I know some of you are squeamish when it comes to personal disclosure. You should stop reading now. For the rest of you, let’s explore this topic.
It has been almost a year since Julie developed symptoms. A year filled with appointments, procedures, pain, more procedures, and disability. It has been a year of changing future dreams and modifying present expectations. It has been a year of worry and fear.
Our family’s geist is one of rational acceptance. As serious as Julie’s condition is, it is not our nature to gnash our teeth and focus on the negative. We move forward methodically as we navigate the labyrinth of doctors, hospitals, and procedures.
Julie has worked hard and has made progress. However, there are limitations to what she can do. Her progress bar continues to move to the right, and I am proud of her efforts. However, it is not all rainbows and unicorns.
My retired life has been constantly redefined as I have worked to discover the right balance of tasks and activities to give me a sense of purpose and pleasure. Generally, I have been successful in this pursuit. I do many of the household tasks. This hasn’t bothered me as I felt I still had control over my days and enough free time to pursue my interests. Life was good.
However, this changed with Julie’s illness, and the delta of that change has moved exponentially since her surgery and all of the limitations that it has created.
Below is my schedule for this week. Julie can’t drive now, so most of the blocked times consist of me transporting her from point A to point B. Any additional scheduled appointments are there to meet the needs of other family members. Some of those obligations are in temporal conflict with Julie’s appointments. Additionally, this schedule does not include any of my tasks inside and outside the house. If you are a housewife or househusband, you understand the magnitude of managing a home and a family. Note there are no appointments on the schedule of my activities. There isn’t any time for them.
It would be nice to present myself as Saint Michael. All giving, forever sacrificing, never self-serving. However, my life is not an episode of “Touched by an Angel.” To be honest, I feel resentful. I’m not bitter towards Julie or the cancer. I’m resentful of the situation that I’m in, where once again my days are scheduled with little to no time for me.
My intellectual side rationally deals with this situation. My Catholic side makes me feel guilty that I have any negative feelings. But my emotional side wants to scream, “This isn’t fair.”
Julie is coping in her own way, normalizing her situation by returning to life before cancer. Before cancer, her schedule would change constantly, as would her activities. She continues to replicate that flexible pattern now. I completely understand her position in principle but not in action, as it directly impacts me. Finding out that her schedule has changed the day before can sabotage any plans I may have made for myself.
I am a natural caregiver, but I understand that I also need to care for myself. I’m aware of the phenomena of caregiver burnout. A syndrome that includes depression, isolation, irritability, apathy, fatigue, and other symptoms. Thankfully, I’m not there. However, I need to be vigilant. A burnt-out caregiver is useless to anyone, including the identified patient.
My symptoms consist mainly of the above resentment and feeling sorry for myself. As with most things, I am facing those identifiers head-on.
Being a guy that likes predictability, I must know where my responsibilities lie. I accept that I need to drive Julie to her appointments. However, last-minute changes are only OK if there is no other option. This is especially true with Julie’s work schedule, which has become a moving time target. I’m approaching this issue with truthful discussion. Once Julie is driving again, she can alter her schedule as she sees fit, but I need to know when I’m doing something and what I’m doing.
As far as self-care is concerned, I have had to modify my goals. I can’t go on a trip or even be away for a few hours. Those options are currently off the table. However, I need to explore new things and be creative. Recently, I had three hours between a drop-off and pick-up. It wasn’t practical for me to return home. Instead, I found a new path to go on a hike that turned my time into a pleasant 3.5-mile walk. I brought one of my old cameras I hadn’t used in a while. It was fun to relearn its controls as I scanned the area for interesting pictures to take. I had a little time left that allowed me to visit a family member who lives close by. A potentially soul-crushing three hours of sitting in the car became an enjoyable and creative adventure.
Yet, there are things that I have to let go of. My friend, Tom, has a wealth of knowledge, a treasure trove of tools, and a creative mind. I wanted him to help with a simple modification of Violet the campervan’s kitchen. Tom developed a much grander idea that I found very exciting. Cooking in Violet over four years of camping has given me insight into my current kitchen’s limitations. Tom offered to rebuild my kitchen completely. He had a break in his schedule this week, and this idea could have become a reality by week’s end. It was a fantastic idea and a generous offer, but my schedule is filled with other tasks. No new kitchen for Violet. Ouch.
I will find solutions and get through this tough time. However, I know I’m not the only person in a caregiving role; others are also being pushed to their limits. The identified patient should get the lion’s share of concern, love, and caring. But the immediate family of that person also suffers, and sans illness, they are impacted in many of the same ways.
As caregivers, being honest with your feelings and doing a daily self-assessment is imperative. What is my mood? What is my energy level? What is my level of interest in things that I usually enjoy doing? How do I feel about the identified patient? What do I need to modify? What do I need to change? What do I need to say? Direct communication is always better than acting out resentment.
Pushing until you burn out helps no one, including the identified patient. Life can sometimes be challenging. However, there is always some way to improve almost any situation. Respectfully and honestly communicating with your loved one can differentiate between isolating angrily or working as a team.
As Julie, the kids, and I progress in our journey, I’m sure there will be many twists and turns, ups and downs, good times and bad times. Such is life, but I am determined to make it work by clear communication, a realistic understanding of our limits, and modifications in any behaviors damaging our progress.
Lastly, caregivers need love too. A kind word, a pat on the back, and an affirming nod can boost us when we are ready to throw in the towel.