Difficulties, Dilemmas, and Joys of Spousal Caregiving and Caretaking

For decades the word “caretaking” was the preferred term for one who looked after a loved one as well as one for whom that was the chosen profession. Over the last thirty years, the term “caregiver” has taken precedence. Still, they are sometimes used interchangeably.

As a full-time caretaker/caregiver for my wife Suzan for the last four years after major oral cancer surgery, I found a distinct difference between “caregiving” and “caretaking.” They require separate skills, emotional responses, and life adjustments.

I hope that briefly telling our story, giving a list of “lessons learned” from my experiences, talking to healthcare experts, and doing research will benefit patients, caregivers, caretakers, and those who are or may one day embark on the ineffable journey into the unknown wilderness of serious illness.

Between 1995 and 2017, Suzan underwent 19 surgeries for “chronic oral cancer,” I acted as occasional “caregiver.” I dealt with rubber stamp denials by insurance companies, made appointments, and took over daily chores that we usually divided. I ate in a separate room until she could eat. We scheduled surgeries during my breaks from teaching at CalArts and between Suzan’s art exhibitions whenever possible.

Friends were helpful. My parents frequently flew in to support us. It was painful to watch Suzan as she underwent so many surgeries. She displayed remarkable strength and persistence. Still, we felt powerless against the lurking vampirical forces of cancer.

As best one could, Suzan became accustomed to her life of chronic cancer. She never stopped painting and exhibiting. She has had fantastic surgeons, first in New York and then in Los Angeles, where Dr. K has taken care of her since 2003.

Suzan began seeing Roger Dafter, a UCLA oral cancer faculty therapist. He helped guide Suzan through an ever-changing maze of emotions. My therapy sessions changed focus to triaging the wounds caused by cancerous cells, exploding like IEDs on the road to our future happiness.

In October 2018, the nuclear nightmare became reality: the cancer turned aggressive and potentially lethal. The PET/CT scan indicated a tumor in Suzan’s tongue and jaw and is "highly suspicious for metastatic nodal disease."

Dr. K removed the tumor and 50 nodes. Dr. B replaced the right jaw bone with a bone from her leg and grafted new skin from her thigh onto her tongue and gums.

After the operation, Suzan could not eat or speak, received all her nourishment through a feeding tube, and wrote everything down on her “Boogie Board.” How long this situation might last–we had no idea. Months or forever?

The scan had misrepresented the potential cancerous nodes. The pathology reports came back negative. This greatly improved Suzan’s prognosis.

Despite the previous surgeries, I was unprepared for what came next. Suzan underwent six weeks of radiation. We converted her studio into a kitchen where I ate my meals, so I didn’t entice her with the odors of food.

For over a year, Suzan could not be left alone because she couldn’t speak. My mom had passed away, and my dad was too frail to come help. The immensity of the emotional and physical situation was lessened exponentially when my cousin Ross came to live with us for seven months. His presence allowed me to sleep at night instead of hiring a caregiver we couldn’t afford. (He got free room and board, and we paid him.) He drove us to radiation therapy, picked up food, and walked the dogs, among many other chores.

After two years and two more surgeries, Suzan got off the feeding tube. She can now eat, if a limited soft-food diet, and speak clearly with the help of two mouth prostheses. We eat together. It has been four years since the “Big Op,” and Suzan’s latest PET/CT scan was clean. She remains on painkillers and other medications. I have more responsibilities than before but far fewer than even a year ago. Suzan is painting. I retired from CalArts, and I’m writing again.

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The traumas and fears of physical illness are brutal and engender emotions usually not previously confronted. Foremost, this applies to the patient but also to the spouse/caregiver. The same goes for the unforeseeable psychological repercussions, which are harder to spot and define. There are no EKGs or pathology reports that are as exact in discovering and defining the depth and response of each person’s unique emotional reactions.

Well-researched questionnaires can make general assessments but lack the preciseness of the above tests. The truest assessments and treatment plans come from qualified mental health community members engaging in personal interaction. I believe both patients and caregivers should have access to therapy.

The dilemma of choosing to go to therapy and if it is right for you and what form–one-on-one, couples, or group is formidable. I think it is an essential decision. Negotiating the journey alone or even with dear friends is a burden that is best avoided. Therapy can make the near-unbearable stress bearable.

The joys of caregiving are slow to come. There is no possible way to overestimate Suzan's emotional pain and the changes she has encountered, but her spirit and courage are unflagging as she tackles the challenges of her new life.

Some of the most rewarding days of my life occurred when Suzan and I ate together for the first time in years, when her PET/CT came back clean, and when she scheduled her first exhibitions in over four years. The “sacrifices” I made pale in comparison to her progress and the happiness I feel as we share the adventurous and loving future that lies ahead.

What I learned as a loving partner, caregiver, and caretaker.

Find the right doctors. Get a second and possibly a third opinion.

Investigating possible therapy for yourself and your loved one is worth repeating. Having a therapist you can both consult is helpful. You are taking this journey together.

If possible, find a therapist familiar with your partner’s specific illness.

Therapy is often expensive. Psychology Today is a good resource for finding care.

Caretaking

• Keep lists of meds. Track when they need to be taken and refilled.
• Keep a calendar of appointments. Suzan had appointments three to five times a week for the first year. During radiation, she often had two appointments a day.
• Sign up for a CaringBridge site. This site allowed me to write one post and communicate with over 100 friends and family. It saved time and kept everyone informed.
• Set aside time to deal with insurance or Medicare and to order drugs. Online prescription services and food delivery services are helpful.
• Errands or household chores you shared are now your responsibility.
• Prepare for unexpected financial expenses. The consequences of serious illness on finances are so complex and unique that two sentences of advice are insufficient. We were in a position to know disaster could hit any time, so we prepared as best we could. Still, with our loss of income (I took social security early), the fear we might have to sell our house and move in the middle of this crisis was intense and one I kept from Suzan.

Caregiving

Not only has your spouse’s life changed but so has yours, possibly irrevocably and forever.

• Communication. Often the patient is reluctant to ask doctors hard questions. Talk with your spouse about what questions they want answered.

For years we’ve emphasized communication skills when choosing doctors. Suzan has a team of doctors and medical therapists. Dr. K, a superior communicator, acts as captain of the team. Pretty much everything runs through him, and he communicates information to us if we need help.

Investigate and confront your fears for your spouse’s future and the expectations placed on you. Ask about their fears. Communication is key! If need be, do it in conjunction with a therapist.

Keep in mind that new and old physical and emotional vulnerabilities for you and your loved one will arise.

• Patience and empathy. Saying I’m sorry (with no apologies to “Love Story”) is necessary. So is saying things like, “I know I can’t fully understand, but I’m really trying.” When appropriate, “I do understand.”
• Listen and watch for signals of distress.
• Time management. Do your best to manage time for self-care. Your schedule will be erratic.
• Schedule as many telehealth visits as feasible.
• “Caregiver burnout” is not a myth. If the situation is becoming overwhelming, you need to discuss that with your spouse. Both of you will suffer if it is ignored. I repeat to myself: “Don’t be the hero.”
• Exercise.
• Don’t be afraid to cry.
• Take care of yourself by keeping a journal.
• Stay connected physically. Suzan and I sit together every night. She rubs my head, and I rub her feet.

To find a therapist near you, visit the Psychology Today Therapy Directory.