We as a society have two overwhelming responsibilities: to educate and care for our young and to care for the elderly. It seems these days as though we are failing at both.
Last year, my mom had difficulty swallowing. Her doctor assumed it was heartburn and prescribed antacids. He suggested lab tests, but under her Medicare plan, each test carried a $250 deductible. Being on a Social Security income of $1800/month, mom was concerned with “unnecessary spending.”
She shattered her hip five years ago and ended up paying a nursing home $15,000 on top of her medical/long-term care insurance. Fragile bones and medical insurance don’t play well together, and Medicare was in a rush to get her home before she was ready. So she skipped the lab test so that she could continue to enjoy her few “extras” like cable, the newspaper, and lawn service. Medical insurance was “affordable” but the co-pays are something that many senior citizens in Florida deal with.
After months of difficulty eating, an endoscopy was performed in late October. A large mass in her esophagus blocked the easy passage of food and liquids. To determine exactly what that mass was meant another procedure and another deductible. My siblings and I sent money to get the biopsy done.
Just before Thanksgiving, we got the word that mom had esophageal cancer. Depending on who we talked to, it was either stage two or stage three and she had between six months and a year to live. She’d already lost close to 40 pounds of body weight because she couldn’t keep food down on a regular basis. Thanksgiving was bad since she loved the meal, but the spasms from her esophagus caused her to spit it all back up. In tears and getting weaker, the doctor said that surgery or chemo were inappropriate for her. That 6-12 month timetable became 3-6 months.
To get her stronger, doctors suggested placing a stint in her esophagus to better allow the passage of nourishment. The co-pay was nearly $500, and my siblings and I pitched in because she couldn’t afford it. She was told directly, “prepayment is mandatory.” The stint was placed on Friday, November 30 and she was sent home immediately after being in recovery a whole two hours.
She was nauseous on her way home and started to vomit. And vomit more. The stint exacerbated the mass in her throat and her body was reacting violently. It continued all Friday and into Saturday. The doctor’s service suggested anti-nausea meds, but without a car, it meant that Mom would be alone. But for a "small fee," they’d send a nurse with meds to check on her and help get her comfortable. Even with those meds, the symptoms escalated and an ambulance was called on Saturday night. Mom was exhausted, dehydrated, and in pain. And that ambulance was another $150.
With appropriate care, Mom stabilized. Anti-nausea meds, anti-anxiety meds, and IVs made her better, but Medicare wouldn’t pay for full-blown hospital care. Nope — they wanted her in hospice care. She could either go home and have a hospice nurse visit every three days or go into a hospice facility with 24-hour coverage. Medicare was clear that they would only pay room and board until her symptoms were controlled. So off she went to hospice Monday morning.
My siblings and I flew down Tuesday. The hospice physician told us he thought she had a week. One week. We arrived to see this hale and hearty woman of our childhood now wasted and withered away having lost over 40 pounds. She was on drugs for anxiety and nausea, morphine for the pain, and an IV of clear fluids because she didn’t want a feeding tube. Her will to live was fading fast and that night we had to have a conversation about the end of life. Mom was clear on where things were going.
When we arrived in the morning, mom’s IV was already out and she was only getting her meds. She’d had the doctor remove the IV. Now it was a waiting game. We talked when she was awake, as her meds caused her to sleep a lot.
On Thursday morning, the hospice’s social worker informed us that since the IV was out and meds were keeping her “comfortable,” Medicare considered her symptoms “under control” and wanted her sent home. SENT HOME? We chose to keep her there at a discounted room and board of $125/day. As Thursday progressed, Mom slipped further towards an oblivion she’d come to welcome — Medicare be damned.
Come Friday, we were taking shifts holding her hand and going through her home; seeing photos we’d never seen before, seeing memories we thought lost (or buried), and seeing not just her life but that of her parents before her. Donating things. Selling some others. I took the late shift and watched her sleep fitfully; mumbling and groaning about some long-ago event or perhaps her coming finale while I held her hand and wondered where our time went.
I left Saturday afternoon to come home. Tickets couldn’t be changed without ridiculous cost and I hadn’t expected she’d live that long. I kissed mom goodbye for the last time, walked out of hospice, and drove to the airport in tears.
We grow up thinking that our parents are immortal — we can't imagine their loss or death. We become adults and take for granted they'll always be here — until we lose a grandparent and realize we're all mortal.
As we get older still we wonder "When will it happen? Will I be close? Will it be slow or fast? Will they be in pain?” Then it’s the thought of, "When will I go?” Mom died that Sunday evening at 7:55 p.m. with my sister still there to hold her hand. At 86 1/2 years she had finally gone “home” and escaped the pinching fingers of greedy insurance companies and a dispassionate government. She was free.
(Alan Vervaeke is a veteran and father happily living in Gilford.