Caregivers Helped Us Be a Family. Everyone Should Have That.

[Tennesseer]

NYT opinion article.

Caregivers Helped Us Be a Family. Everyone Should Have That Option.

My 7-year-old son, Carl, realized that it was Tuesday and asked why Robert was not coming to our house that day. Robert had been a caregiver for my husband, Ady Barkan, for more than five years, helping with Ady’s day-to-day activities as he became progressively paralyzed because of the neurodegenerative disease amyotrophic lateral sclerosis, or A.L.S.

Tuesdays were Robert’s days, when he would help Ady work during the day and pick up Carl and his sister, Willow, in the afternoon, often going out for an activity in our red wheelchair-accessible van. Robert also helped Ady get into bed four nights a week, arriving around the kids’ bedtime and staying until 10 p.m.

Ady died from complications of A.L.S. in early November. Since then, the bustle of caregivers around our house has been strangely suspended for the first time in years.

The kids didn’t understand why Robert couldn’t come anyway, so I texted to invite him for dinner. We had our usual Tuesday meal of tacos, which Ady had branded “Taco Martes”; while I cooked, Carl, Willow and Robert played Uno in the living room.

Ady and I had close relationships with his caregivers, many of whom worked with us for years. They allowed Ady to continue to live in our home, surrounded by his family, even after his paralysis had progressed to the point where I could not care for him on my own.

It’s likely that most A.L.S. patients do not have access to this kind of support — or to adequate caregiving in general. Health insurance plans cover little, if any, in-home caregiving to assist with the tasks of daily life (as opposed to skilled nursing services, which administer medicines and change bandages, for example). Medicare also does not cover assistance with activities like bathing and dressing. To qualify for Medicaid — which varies state by state and has lengthy wait lists for home care — patients and their families usually must exhaust almost all of their assets first, which would have left me, as a now 39-year-old widow, with almost no savings. We were fortunate to arrive at an ad hoc arrangement with our health insurance company that reimbursed most of Ady’s caregiving costs, which totaled about $40,000 a month for round-the-clock care.

Rest of article here: Caregivers Helped Us Be a Family. Everyone Should Have That Option.

[Tennesseer]

A good childhood friend of mine died in 2017 from ALS.  His ex-wife, also a good childhood friend of mine moved into his home (and the spare bedroom) and became his primary caregiver. 

I never asked how my friend how much help she/they received from our government for helping to take care of him.  Their incomes were modest.

[jerseygirl]

They were really fortunate that their health insurance paid even some home care

[busymom]

Therapists, caregivers, everyone who participates in helping a family member becomes like family.  We've had some therapists that worked with DS when he was little that were so kind, and honestly did feel like family, because they wish the best for your loved one.  

I'll never understand why insurance doesn't cover more in-home care.  It's GOT to be less expensive than forcing family into care centers.  Not to mention, who really wants to live away from home?  

[Knee Deep in Water Chloe]

I can see how the kids would be confused about all of that.