Looking for Clarity and Assistance
Since the kids didn’t comprehend Robert’s absence, I sent him a message inviting him to supper. Ed had dubbed our normal Tuesday takeaway “Taco Martes”. Robert, Willow, and Carl were playing in the living room while I was cooking.
Ed had a tight bond with his carers, many of whom were employed by us for many years. Even as Ed’s condition deteriorated to the point where I was unable to care for him alone, they permitted him to remain at home with his family. The majority of ALS patients lack access to these resources and quality medical care. In-home care is only partially covered by health insurance companies, far less than skilled nursing services.
Medicare also does not pay for help with dressing or taking a shower. I am a 39-year-old widow who has almost no savings since qualifying for Medicaid, which varies by state and frequently has extensive waiting lists for home care, typically forces patients and their families to drain most of their assets. Fortunately, we had a deal in place with our health insurance provider that took care of the majority of Ed’s medical expenses, which came to around forty thousand dollars a month.
The Exorbitant Price of In-Home Care
Yes, you read correctly: Ed’s care cost us close to half a million dollars a year. Living with ALS is a severe illustration of the current care dilemma in the US.
The cost of private healthcare is prohibitive, and more Americans will probably require paid treatment in the years to come. The pandemic brought to light how dependent our society is on caregivers, but we haven’t been able to improve our woefully insufficient care system. In our divided Congress, there appears to be a deadlock over how to make home care more accessible and inexpensive. This cannot continue to be the case. Voters will hear candidates’ platforms this election year. We have a chance to urge prospective officeholders to give top priority to a program that acknowledges the value of care in the lives of millions of people, made possible by those who look after individuals like Ed.
Traveling Through ALS
In 2016, Ed received an ALS diagnosis while Carl was only four months old. He had a tracheotomy in 2019, which involved inserting a tube for a ventilator to support his windpipe. The dynamics are altered by ALS. Consistent care is required for a protracted condition such as ALS, including tubing changes, suctioning secretions, and reacting to ventilator alarms. Due to his inability to perform these duties on his own, Ed needed assistance around-the-clock from a group of nine caregivers, one of whom was Robert.
At first, Ed and I opposed the thought of having caregivers because we wanted to keep our lives somewhat normal. We were afraid that outsiders might break into our house.But when we got to the point where we required more assistance, we discovered that it helped to restore some normalcy to our lives. Instead of me getting the kids ready for bed and getting Ed ready for sleep, we could unwind together, chat, and watch TV in the evenings. It’s obvious that having caregivers on board preserved our marriage. But because private care is so expensive, the majority of ALS patients are left with few options: they can live in Medicaid- or private-funded nursing homes; they can rely on overworked family caregivers, who frequently have to give up their jobs to offer full-time care;
or they can decide to pass away with medical support. The majority cannot bear the financial burden of round-the-clock care, which is crucial for those with ALS and other similar conditions.
Building a Caring Family
Our family’s development has been greatly aided by caregivers. That ought to be an option open to everyone.
Carl, my seven-year-old son, observed that it was Tuesday and questioned why Robert wasn’t coming to visit. Robert had been supporting my husband Ed Barkin during his battle with Amyotrophic Lateral Sclerosis (ALS) for more than five years. Tuesdays were unique because Robert would help Ed and use our accessible van to take Carl and his sister, Willow. Additionally, Robert helped Ed get ready for bed four times a week.
Tagically, Ed’s ALS complications led to his passing in early November, and since then, the presence of caregivers around our home has been profoundly missed.
Seeking Understanding and Support
The kids couldn’t grasp why Robert had disappeared. So, I reached out, inviting him over for dinner. We cherished our typical Tuesday meals, dubbed “Taco Martes” by Ed. While I prepared the food, Carl, Willow, and Robert enjoyed their time in the living room.
Ed had strong relationships with his carers, several of whom were with us for years at a time. Even when Ed’s ALS worsened, they made it possible for him to be at home with his family. Sadly, not all ALS sufferers have access to this kind of care. Essential home care is frequently not fully covered by health insurance. For example, Medicare does not pay for personal hygiene or clothing. Medicaid qualifying usually forces patients and families to use up almost all of their assets, leaving them in a vulnerable financial situation. Medicaid qualifying differs from state to state and frequently has lengthy waiting lists.
The High Price of In-Home Care
Yes, it’s astounding, but Ed’s care cost us close to half a million dollars a year. Having ALS is a perfect example of the care crisis facing Americans today. Although the cost of private care is still unaffordable, more Americans will need these services in the near future. The pandemic brought to light how dependent our society is on caretakers, yet we haven’t addressed our inadequate system of care. In our divided Congress, reforming and improving the accessibility and affordability of home care appears to be a divisive topic. We have an opportunity this election year to push candidates to embrace a caregiving-focused platform, which has been essential to many lives, as many who looked after Ed attest to.
Traversing the Terrain of ALS
Ed’s experience with ALS started in 2016, when Carl was only four months old. He had a tracheotomy in 2019, which required the insertion of a tube for ventilator support in his windpipe. The rhythms of daily life are altered by ALS. It becomes imperative to provide constant care, including replacing tubing, cleaning secretions, and responding quickly to ventilator alarms. Ed required 24-hour assistance from a group of caretakers, including Robert, due to his condition.
Ed and I were first wary of hiring caregivers because we thought it might interfere with our family life. But when Ed’s requirements increased, their help brought some sort of routine back. We could watch TV, chat, and spend lazy evenings together. Crucially, having caregivers helped our marriage last.However, the prohibitive expenses of private care leave most ALS patients with few realistic options: Medicaid-funded nursing homes, overworked family caregivers, or the painful decision to end their life with medical assistance. Many people lack access to or cannot afford the ongoing care that is necessary for those with ALS and other comparable conditions.