Aides and Caregivers

AFTER BEING DIAGNOSED with ALS, our 39-year-old son moved back into our house because his wife didn’t want to care for him. My wife and I, already considered senior citizens at the time, became his caregivers overnight. Trying to cope with Jeremy’s needs left us sleep deprived and exhausted. Eventually, his girlfriend came to live with us and care for him too.

For additional help, we looked for a daytime home health aide, going through a number of them before we found the best one on the planet. At one point in her employment with us, she fell in her own home and couldn’t work for us for quite a while, but Jeremy paid her half wages anyway to keep her on retainer.

She worked for us until he passed away. She even spent days and nights at the hospital with one of the three of us for the last two and a half weeks of his life. He always had two caregivers covering him.

As Jeremy’s illness worsened, we also needed a nighttime aide at home, but the ones we tried were unreliable, so we took turns sleeping near our son’s room.

During the last eight months or so of his life, he developed head drop, so he needed two caregivers present at all times: one had to be in the house somewhere, and the other had to be within ten feet of him.

Because we went through a number of aides, we learned a lot.

Daytime aides

We had quite a number of aides come and go. Either we fired them or they quit because of all the work. Even though aides undergo training at the agency, they aren’t necessarily capable of caregiving.

Some home health aides do just routine things, while others have worked with ALS patients. Many of our aides had never heard of ALS and had no idea of the intensity of work the disease required. Also, there are restrictions on an aide’s hours if you use Medicaid.

One aide we interviewed thought all she had to do was take our son for walks and play cards with him. A few of the aides were obese and couldn’t fit down a narrow stairwell easily. One couldn’t manage the intense physical interactions Jeremy needed.

Another aide wore restrictive clothing that prevented her from getting her knees up on his bed to work with him. And still another tried getting our son out of his wheelchair by grabbing him under his arms and just lifting.

If you plan to hire an aide, interview the person thoroughly. Even then, there is no guarantee the person you pick will work out. You have to keep trying.

Nighttime aides

We needed a nighttime aide because my wife and I were sleep deprived from taking care of our son every night. The hours were 10 p.m.–7 a.m.

One night aide kept falling asleep and didn’t respond when Jeremy sounded his call bell. This same aide didn’t use deodorant and I had to talk to him about it.

Another night aide was extremely religious and kept trying to negotiate an 11 p.m. arrival time instead of 10, because the earlier time interfered with her prayer meetings. Our son could not stay awake that late. I told her I didn’t want her praying in our house. One morning I woke up because our son needed help, and the front door of the house was open. The aide was nowhere to be found. She later told me she had gone outside to pray. We fired her.

We found an aide (an unmarried mother of four), who came recommended. She arrived a 9 p.m. as requested for the night shift, and we went over a long list of information and requirements for her. Then I took out a Jason Becker Vocal Eye Chart to show her how it worked. No matter how much I tried to direct her to my chosen letter in the upper left corner of the chart by moving my head in that direction, she kept going to the lower right corner. Bad news.

Whenever we had to train a new night aide, we had the aide stay in a close bedroom while I slept just outside our son’s room for a couple of nights, so when our son needed help, I got up and I called the aide so she could watch as I attended to our son’s needs.

One aide went home at 7 a.m. after her first night. She called us before she was supposed to show up for her second night and told us she was tired that whole next day and wasn’t coming back.

Agencies

Agencies can provide aides, but these agencies take at least 50% of the fees you are charged, while the aide is underpaid. When we last used one (early 2021), they charged around $27 or more per hour (nurses were more expensive). One agency tried to charge us for the required bimonthly nurse evaluation.

Some aides are available privately, and some you can pay under the table, so you can pay less than the agency fee, but more than what the aides would earn through an agency.

Agencies try to lock you into their services and put the screws to both you and their aides by having restrictive “look-back” clauses in their contracts. These clauses state that no one can hire one of their aides for, let’s say, one year or three years after the aide has left that agency AND that we would be liable for a huge penalty if we did so. I can see why they get annoyed when one of their aides quits after she is hired privately for the same patient at a higher salary under the table.

We spoke with two different agencies about nighttime aides. One agency (I don’t remember the name) wanted us to sign a contract that said we agreed to be liable for a $20,000 penalty for the agency’s “lost training income” if we hired one of their aides away from them within their one-year look-back.

The agency also wanted access to both my credit card AND bank account. I told them I would allow access to only one account. Another agency, Amada, had a three-year look-back and we could be liable for $40,000. A lawyer told me that New Jersey has a right-to-work law and those restrictions would not hold up in court.

Amada also kept insisting on having our son’s Social Security number, which I told them was none of their business and was irrelevant to the transaction we were negotiating. They finally gave up on the number, relented to a one-year look-back and a lower liability, and sent us an aide, but we didn’t use her very long.

Another agency, Bayada, sent us an aide, and I paid for the first week of services by credit card over the phone. The next week, I got a bill stating that the second week was already paid up. I didn’t know what happened so I called their billing office.

They told me they just “ran my credit card” because they had stored it in their system, but they never told me they were going to do this. They used my credit card without asking for my permission—they certainly never received permission. I terminated them.

We hired one aide through Lean on We. The woman told us that she worked with an ALS patient who progressed from early symptoms all the way to the end, so we figured she knew a lot.

I spent the whole day training her. But it turned out that the aide was a prima donna. She had one-inch-long nails, so she couldn’t easily press buttons on the equipment or interact with our son without gouging him. She feared she would break a precious nail.

My wife asked her to dust and clean up (light housekeeping). She turned her nose up at that, waved the dust cloth around, went home at the end of the day, and quit.

Hiring an aide

When you interview aides, whether they work privately or come from an agency, be as thorough as possible. 

Based on our experience, I’ve compiled a list of responsibilities to discuss with candidates and a list of questions to ask them.

Responsibilities

Aides must be able to do the following: