Charles Elwert

Preparing to become his wife's full-time cancer caregiver meant Charles had to receive physical therapy at 70 years old to have gain more range of motion.

 of caregiving might ask, “Why didn't you have help?" I am now compelled to answer. My insurance policy manual page reads as follows:

You must be homebound (my wife Alice was quadriplegic after her breast cancer progressed in 2021 and affected her motor skills.)

Home health aide must total fewer than 8 hours per day and 35 hours per week.

Please note this section is not the after the stay at the hospital part. My insurance refused to provide this service. Yes, doctor’s orders were issued and endless arguments were made to many of my insurance’s employees with little success. When appointments were made, many were missed. Thus, the clock was ticking, and my wife’s activities of daily living were left to me. If I had left my wife alone to fall and earn an intracranial hemorrhage with a million dollars’ worth of hospital bills, then insurance would have provided at-home services, maybe.

Meanwhile, the COVID-19 pandemic was raging. I had to protect myself with all the boosters, flu and pneumonia shots. I also had at-home pharmacists administer these immunity boosters to my wife. Then, I took in all the mask, distancing and hand-washing protocols to prevent me from passing symptomatic and asymptomatic viruses to her. Also, I requested routine urinary tests for her. I knew that UTIs also affect one’s mental abilities. I even found an at-home podiatrist to care for her foot needs.

Plus, as a result of the quadriplegia, my spouse developed recurring pressure sores, which became very painful to her. They required repeated cleansing, dressing and antibiotic ointments. Nevertheless, I relentlessly kept infection at bay. I regularly re-positioned her through the day and night.

However, I was not the real hero here. The real heroes were behind the scenes; two physical therapists were the real heroes! They gave this 70-year-old body the endurance, range of motion and flexibility to bathe, change, lift, feed and dress my wife. Without them, I would not made 10,000 hours of caregiving and my wife would have passed away much sooner. These heroes added eight more years to my wife’s life. They allowed me to care for my wife at home. They deserve our praise for this tireless work.

Furthermore, as a result of neglectful and purposeful insurance obstacles, I was forced to delay my own physical health. I postponed cataract surgery, prostate biopsies and annual screenings because post-opt restrictions of lifting, bending and day-to-day activities would restrict. Then, no one would care for my spouse. Yes, many, many hours of stress and heartache to preserve life. People would tell me, “I don’t know how you do it!” In contrast, those same people would never offer a hand or moment of respite care for me to even go watch a movie in the theaters!

We must comply with insurance requirements but who has the endurance to make people comply with their regulations, appeal after appeal? Time is on their side, not yours. This is the “rest of the story.”

This post was written and submitted by Charles Elwert

. The article reflects the views of Elwert and not of CURE®. This is also not supposed to be intended as medical advice.

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Articles

Even though my wife became quadriplegic after her breast cancer progressed, our insurance still did not help us out, so I became her caregiver full-time.  

My Challenge With Insurance as My Wife’s Cancer Caregiver

As a caregiver to his wife, Charles wrote several poems about their time together during her final days. 

I wrote eight poems in chronological order of the events that led to my wife's death, as I 

. These poems might be very hard to read in one sitting, but I wrote them together like this, similar to an opera or suite.

Here are eight poems about my experience as a caregiver to my wife during her final days.

Poems About My Time as My Wife’s Caregiver During Cancer

For the last 77,000 hours (24/7) I have been the only caregiver of my wife.

In 2005 my wife was diagnosed with ovarian cancer. She completed the whole hysterectomy and chemotherapy cycle. From 2005 through 2010 she was regularly followed with standard protocols. Then she was released and deemed “cancer-free.”

From 2010 through 2017 she received her annual mammogram screenings. During this seven-year period, no physician noted that many patients with ovarian cancer may develop breast cancer. No physician suggested considering a double mastectomy.

Then in June 2018, she received a call from her primary care physician that something was showing on her left breast. A needle biopsy showed invasive ductile carcinoma — triple-negative breast cancer. A lumpectomy was performed. Shortly thereafter, radiation treatment began, and CURE® magazine became standard reading material for me.

During a treatment session in November 2018, the radiation doctor noticed that she was not walking right. He thought it was drop foot and recommended that we see a neurologist.

Tests showed no current through her lower legs. Also, an ankle foot orthotic (AFO) was ordered. Many MRIs were also completed to check for back or brain conditions. In 2019, it became necessary for her to use a cane. She was checked for Lyme disease and many other neurological diseases like ALS. All lab tests (but one) were normal.

Her ganglioside (GM1) test showed extremely high results. Increased levels of the GM1 antibody are associated with neuropathy and motor issues. Thus, in April 2019 she received the multifocal motor neuropathy diagnosis. Alice started monthly infusions of immunoglobulin and some physical therapy after falling down on numerous occasions. Her immune system was attacking her neurological system. I did not understand. Then, I became an IG Living magazine reader.

By September of 2019, she had to use a walker for safety reasons. The disease had also made her incontinent.

Furthermore, cancer then came back to her left breast and required another lumpectomy. Then, six months later, the cancer came back again to the left breast. So, in 2022 she had a double mastectomy.

In 2021 she no longer could work or drive. This disease progressed, to her becoming completely homebound and quadriplegic, except for medical transport to doctor or hospital trips.

Then, in March 2023, I noticed that Alice had difficulty swallowing, so she completed a swallow study. It was recommended that she receive nectar thick liquids. I minced and diced all her foods three times a day as well as mixed Simply Thick as necessary in liquids. Alice had dysphagia now. Her speech was declining as well.

By March of 2024, her appetite declined, and I was worried about silent aspiration. In April 2024, she developed pneumonia and was taken to the ICU, intubated and an NG tube was inserted. She also developed another cancerous tumor under her right arm, even though she had a double mastectomy!

Alice spent 30 days in and out of the ICU.

Suddenly, she was forced out of the hospital, the NG tube was removed, and she was transferred to a hospice center where no hydration, no nutrition and no oxygen was given. The medical community at all levels simply gave up. She literally starved to death from multifocal motor neuropathy, which worked its way from her legs to her throat. She died on May 5, 2024 — three days after entering hospice.

Furthermore, I cared for her solely through great misery and sorrow. As the disease progressed, Alice lost all her friends, relatives and co-workers. No one called, no one came, no one cared except her husband of 27 years.

My wife faced ovarian cancer, breast cancer and multifocal motor neuropathy, and I was her only caregiver. 

A Reflection on More Than 77,000 Hours of Cancer Caregiving

When my wife was first diagnosed with invasive ductile carcinoma in July 2018, Ruth Todd, B.S.N., RN, CMS, CN-BN, stood literally side by side with us through the diagnosis, treatment plans, surgery and recovery.

Ruth Todd walked next to my wife when she was taken to surgery for a lumpectomy. Ruth Todd checked on us in recovery. Ruth Todd sat next to us while we talked to many oncologists. Ruth Todd delivered treatment plans and booklets to my house! One cannot be more personally involved than Ruth Todd.

Ruth Todd is truly a caring professional with a big heart. Ruth Todd deserves your praise and recognition as an extraordinary healer.

Teaching Moment: Ruth Todd stood literally side by side with us through the diagnosis, treatment plans, surgery and recovery.

From the beginning of a cancer diagnosis through recovery, one onoclogy nurse showed the impact one person can make.

Charles Elwert

My Challenge With Insurance as My Wife’s Cancer Caregiver

Poems About My Time as My Wife’s Caregiver During Cancer

A Reflection on More Than 77,000 Hours of Cancer Caregiving

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