We used an in-home care agency to provide caregivers for Mary so that I could continue to work, and to assist me with getting her up in the morning and to bed at night, tasks which needed two people. While one or two of the caregivers were amazing, I spent most of the time managing the agency staff and training them myself.
The in-home care agency nurse delegated multiple caregivers on medications and equipment who were not capable of administering medications or using the equipment. The nurse did not feel re-delegation was needed when equipment was updated, “as long as they read the manual”. She also made unscheduled visits that were upsetting to Mary, interfered with other appointments from home health therapists, and increased Mary’s anxiety.
One of the caregivers they sent was preaching her religious beliefs and had the same therapist as Mary. I fired her on day one.
Another caregiver became less confident each shift, was shaky and sweaty, and had to be constantly supervised. I fired her after one week.
One CNA caregiver was so nervous she dropped syringe of morphine on her first day. This was liquid morphine administered through Mary’s feeding tube, not an injection. I fired her on day two.
One caregiver failed to intervene with the transport driver while Mary was yelling “Stop! Stop!” Her wheelchair was not tied down correctly, causing her a neck injury which created multiple complications. The caregiver told the driver “You really hurt her”, but did not insist that the driver (an EMT) check her for injuries. Mary spent the next 2-3 days in bed with a migraine; the same caregiver spent her shifts at the other end of the house. Other caregivers spent their shifts in the room with Mary.
After a 4-hour training shift with an experienced caregiver/CNA, a new caregiver worked an evening shift, talking the entire time about how good he was, how he only has 12 hours a week off. It seemed this caregiver thought I – the wife – was another paid caregiver. He discussed which agencies were good to work for and which weren’t. He was reported to the agency out of concern for being overworked and thus a safety concern. I fired him after a week. He only got that much time because they had no one else to send.
The agency nurse came to the house to delegate another new male caregiver. She spent approximately 20 minutes at the house, and barely spoke to Mary. She told the new caregiver that Mary was on the feeding tube a couple of hours a day; Denise clarified that it was closer to 24 hours. Clearly the nurse was not current on Mary’s needs.
The same male caregiver did not appear to be comfortable caring for a female patient, and did not appear to have the ability to function in an emergency. Fired after a week.
A long-term caregiver was found to be padding her timesheet, not clocking out until after she had been gone. The same caregiver was late every morning, and discussed her friend’s x-rays with Mary’s home health team, monopolizing conversations rather than allow them to spend time with Mary. I fired her.
Two days later, Mary’s state-appointed case worker called to say the agency had given two-week’s notice and would terminate their care contract for Mary. A follow up call to the agency included multiple lies – the state-appointed case worker felt Mary should be in a facility, they just needed a “plan” within two weeks but would continue to provide care until the new plan was in place. The case worker called 30 minutes later saying that the agency manager had been very disrespectful to her on the phone and that she had the agency was the one who had said Mary should be in a facility. Pretty sure the agency lost state approval that day.
When the written notification arrived from the agency that the contract would be terminated, multiple reasons were given for the termination, stating that their nurse had stated she felt Mary should be in a nursing home, and that her insurance coverage did not cover two caregivers at the same time for transfers (untrue).
The last caregiver they sent before the contract terminated arrived sick. When questioned, he stated it was allergies, but the following day he called out sick. He had already infected Mary, who ended up in the ER with bronchitis, precipitating her decision to have a tracheotomy and be placed on a ventilator.
That was the end of our in-home care.
The agency’s website clearly stated that they were able to care for people with ALS, even until end of life. Yet the nurse had no experience with ALS, was not qualified to assess Mary’s needs, and clearly had no understanding of what appropriate facilities would be IF Mary would be placed in one. The agency repeatedly sent caregivers who were unqualified, untrained, and distracted by their phones. The caregivers were there so that I could continue to work, but I had to stay home many times to supervise them, defeating the purpose. Caregivers should have been instructed NOT to come if they were ill – they should not go to any patient’s home if they are ill.
I am forever grateful to one caregiver/CNA (now an RN) who DID have experience with ALS, who was compassionate, and who worked with us directly through the state during the brief time Mary was at home with the trach. She visited Mary in the hospital frequently, and they had a great relationship. Thank you MoGo.