Everything changes when a loved one is diagnosed with cancer. Everything.
And while the afflicted person may seem to be perfectly normal in his or her persona, don’t be surprised if you don’t understand actions they take. I have experienced a nearly complete role reversal with my wife Cathy now after a year of chemo and radiation treatments have impacted her physically and mentally.
It may not be initially apparent to people who have known Cat, but over an extended conversation, some things don’t make sense. It’s not her fault. And, from being a dutiful husband who understands the three magic words of every mature marriage, “You’re Right, Dear!” a profound change has happened in our relationship.
Cathy isn’t in charge anymore, and I am now a Cancer Patient Caregiver.
I didn’t apply for this job, as I once did apply and accept a position to work as a Professional Care Assistant (PSA) with a local care provider agency. There I worked with people requiring constant care because of physical or mental deficiencies.
I liked the work. I provided relief for families or loved ones who had responsibility for the custodial care of disabled persons. My favorite thing to do was walk or push them around in a wheelchair on the bike trails around Anchorage–discovering wonders of nature. Each “client” had a profile to be learned. I had to be able to overlook what some people call unusual behavior. I had to be accommodating without being patronizing; help when asked for help, and let usual difficulties occur.
We learn from difficulties.
On one occasion a mentally ill person in my care hopped out of the car and began trying to hitch-hike at the drive-out of a McDonald’s. I let her do it until she appeared to be endangering herself by blocking a car trying to leave. We received training in how to restrain people without hurting them.
I was dealing with people I had not previously known who needed services. I had to account in writing for what we did in 15-minute increments. It was objective. I had a personnel manual and training about how to accommodate the needs of clients. Expectations were specific.
My wife’s cancer is subjective. Our love and experience together over 28 years make this a very personal and difficult circumstance. Perhaps by reflecting upon my experience, others may understand responsibilities in similar situations.
Roles of a Cancer Caregiver
A book entitled “Cancer Caregiving A to Z” by the American Cancer Society provides a good overview of what is required: “A caregiver may take on many roles—from home health aide to companion. A caregiver may help feed, dress, and bathe the patient, as well as arrange schedules, manage insurance issues, and provide transportation. Caregivers serve as legal assistants, financial managers, and housekeepers. They often have to take over the duties the person with cancer once performed, while continuing to meet other family members’ needs. In addition, a caregiver can have enormous influence on how the patient deals with his or her illness. The caregiver’s encouragement can help the patient stick with a demanding treatment plan and take other steps that are necessary to get well, like eating nutritious meals or getting enough rest.”
That’s the textbook description. Someone applying for a job as a caregiver could paraphrase that statement and impress someone seeking applicants for a cancer caregiver position.
But as a family member, I have a lot of anxiety and fear about what is happening to my wife and what I can do about it. In semi-retirement I am able to dedicate myself to figuring out her medication regimens–personally providing 24/7 attendance to her needs—if she will accept my efforts.
Sometimes Cathy acts like a recalcitrant 8-year-old: “You aren’t the boss of me!”
The strength of our marriage has always been in an abiding trust and willingness to talk through differences. Certain parts of our life were her domain and the rest of the things needing to be done required agreement. When we have had differences they have sometimes been downright explosive but we start every day fresh and applied rules of fair play to resolving those differences.
Weekly chemotherapy has changed all of that.
Again, from the referenced Cancer book: “Side effects can include short-term hair loss, fatigue, nausea, and vomiting. Drugs and other treatments can help with the side effects of chemotherapy. Many patients have few or no side effects, and you may be among those who have few problems. No one can predict who will and will not have them.”
Cathy has a history of health issues. As her caregiver, I take her to appointments and hang out with her while the chemicals are administered through a “port” that has been installed in her chest for easy access without having to use a needle in a new site every time. I have become familiar with the doctors and other medical personnel at Alaska Oncology and Hematology who are part of the treatment team.
Sometime back Cat had three seizures, an event I had never witnessed before. She melted to the floor on two occasions with uncontrollable jerking and twitching. The third happened in a hospital bed with special cushions to protect her from hitting the sidebars.
I have mentioned before how clearheaded Cathy has always been when it came to managing people, or money or anything requiring mastery of details. After more than a year of treatment, this ability has been fogged. Her ongoing confusion has caused me to double-check everything she says or does.
It breaks my heart to realize Cat cannot do the things she has always done, like cooking, without monitoring.
We have thrown out a lot of food she tried to prepare but couldn’t. She has been a great seamstress and loves to garden but is now unsteady on her legs and has fallen too many times. As a result of a recent fall, Cat has a blood clot in her leg and had to be taken to the Emergency Room. I now administer blood thinner medicine with a syringe, something I have never had to do before.
We hear of many people who have survived cancer and Cathy has the spirit of a champion. We know of cancer survivors who experienced “Chemo Brain” when in treatment and I try to make light of the fact she can no longer make the television remote work.
However, I am heartened by the fact that by the time my beautiful wife leaves the chemo center, everyone is laughing. Her sense of humor is undaunted, and her statements and antics would have people thinking Robin Williams was there wearing a red nose.
She isn’t going down without a fight.
Donn Liston first went to Juneau as a legislative aide in 1983 and remained there 20 years. After becoming certified as a classroom teacher in 2003 he and his wife returned to Anchorage where he taught primarily Adult Basic Education until 2017 when he accepted a position as staff to the representative from Eagle River. This column is intended to be instructional and provide insight into how our state government is run through the eyes of someone who has watched it from various perches over decades. To reach Donn, email: firstname.lastname@example.org.