In the spring and summer of 2023, my husband, Jim Cook, was experiencing weakness and body aches that he attributed to his autoimmune condition and age (69). He felt run down and napped often. He lost his appetite and began to get unsteady on his feet at night. After being turned away for dehydration at three different emergency rooms in Albuquerque, I finally got him admitted to the Sandoval County Regional Medical Center on October 1, 2023.
Soon he was unable to stand or feed himself and was frequently confused. He got a bowel obstruction which seemed a symptom of the colitis he struggled with for years. Then he had an episode of labored breathing and ended up in the ICU on a respirator and feeding tube. There they continued to test him for everything from lead poisoning to Lyme disease. It took a week for a bed to open up in the Neurology unit at University of New Mexico Hospital (the parent hospital) and he was diagnosed with ALS on October 24th.
Although they had a palliative care doctor speak to us, the neurology department did not give me any resources for ALS. I learned online that there was an outpatient ALS clinic in the hospital. It was down 5 floors and at the end of the wing but it may as well have been on the moon. They would not see him unless he was discharged. The hospital was 25% over capacity and they were trying to get us transferred out. It took almost two weeks to get him stable and to find a skilled nursing facility that would accept him.
It turns out that skilled nursing facilities can decline to accept someone who is ‘medically complex’. I spent days calling and visiting facilities only to receive word that they would not accept my husband. He was finally accepted at a rehabilitation center because he needed speech and language services for his swallowing along with occupational and physical therapy because they couldn’t determine (or wouldn’t tell me) what his physical capabilities were. The rehab hospital did their best but were tragically understaffed and unprepared for someone with such extensive needs. We would wait for hours for someone to bring medication or change his brief and he developed bed sores. I managed to get an appointment for the ALS clinic a week after we were discharged but he had to travel by bus in an old wheelchair which was very painful.
The ALS clinic was all inclusive of different specialties which was very helpful. They were the first people who heard my frustration and despair. They ordered a Trilogy breathing machine and an electric wheelchair (that would take 8-10 months to get) and they scheduled Jim for a follow up appointment in 3 months. They also gave me contact information for our New Mexico ALS support group. I still had no idea how to deal with the present situation but I had hope that I could find out. Jim had also developed an allergic reaction to some medication in the hospital that caused his skin to peel dramatically. They scheduled another outpatient appointment for a dermatology clinic. That was another painful, horrible trip as he was essentially immobile and I couldn’t shift him in the wheelchair or change his brief when he soiled himself. I learned that it could be the gabapentin from an offhand comment from a medical student there and withdrawing it helped significantly.
Later that week I learned that even though the Medicare Advantage plan said they would cover 20 days in the rehab center, I received a denial from Medicare because my husband wasn’t improving. After filing a Medicare appeal for the rehab hospital, we decided to transition to hospice. I simply couldn’t watch him suffer in that semi-private room any longer. I had to interview three hospice agencies before I found one that would provide resources as simple as a pressure sore mattress and a feeding tube device like he had at the rehab center. It was unfathomable to them that we didn’t already have any medical equipment at home and Medicare wouldn’t pay for anything new since he was going into hospice. I also needed to hire a home health care agency for 24 hour care as I could not turn or change Jim by myself. This was a huge, uncovered expense but it was worth tapping our savings for the piece of mind.
He passed away on December 18, 2023 after 10 days in hospice and an odyssey of 80 days from his first day in the hospital. While this experience was traumatic, it could have been much worse. We were lucky that most of Jim’s needs were covered by the advantage plan or Medicare and we did not have to lose all of our savings trying to qualify for Medicaid. I had recently retired from teaching so I was fortunate to not have to work while caregiving. I am grateful that I did not have to agonize and struggle to find Jim a long term care facility which wouldn’t be covered anyway and was able to bring him home on hospice. I was able to borrow an electric wheelchair and a hoyer lift to use at home from the ALS New Mexico group although Jim was too far gone to use them. We also could have applied for grants to retrofit our bathroom doors for his access or to rent an accessible van to get him to outpatient appointments had he lasted longer. I am grateful to the main nurse at the ALS clinic at UNMH who answered my frantic questions and helped me find a hospice.
Of course, the one thing we did not have was time. My husband had bulbar onset ALS which attacks the brain, diaphragm, and swallowing muscles and devours the body quickly. Unfortunately most of the medical personnel that we encountered had no experience with ALS and even the experienced people seemed unwilling to explain to me what I could expect and the best way that I could take care of him. Between the shock of his decline, the extensive gauntlet of administrative hurdles, and the complete lack of understanding from the medical providers, I have never felt so alone. The weaknesses in our medical care system are laid bare when you are in such a desperate situation. I would love to become an advocate and share Jim’s story as much as possible. It all happened so quickly that I barely had the chance to get connected to the ALS community. In fact, when I went to register on the CDC website it would not let me register the same month my husband was diagnosed. It’s like the whole support system is designed for the slower acting disease and caregivers in my situation fall through the cracks.