Dignifying Dementia by Elizabeth Tierney Page B

found the telephone number of the insurance company and called to ask what I had to do to activate our policy and how to use the money.
    I had already learned from our sojourn at the skilled nursing home that Medicare didn’t necessarily pay the first 100 days, and Jim would not be coming off a hospital stay. The representative explained that the company required a nurse’s evaluation of Jim, so she arranged for someone to come over. When she arrived, she asked Jim questions which he couldn’t answer. He did know his name and his birthday. He didn’t know his address or the answers to anything else she asked. Afterwards, she looked at me sadly and asked, “How have you been managing?” What was there to say? Badly?
    Jim was approved, his insurance activated. But what was it for? My choice was either to bring people into the house or go to a nursing facility. I knew we would be bringing help into the house.
    As I anticipated, we had to pay the 100-day deductible out-of-pocket from our savings. The representative at the insurance company explained that we had to hire certified nursing assistants (CNAs) from a licensed agency or have licensed people care for Jim.
    I went to the yellow pages of the phone book and found the listing for local home health agencies. I phoned and explained that I needed help during the day for a man with probable Lewy Body Dementia. I would be the night shift, as I would be throughout his illness. Having help during the day meant that I could leave him and not worry, and I would have some relief. That was that!
    While I learned the hourly rate, I hadn’t a clue what the real ‘costs’ were, what the aides’ training was, or what the implications of having strangers in our home would be. I simply hadn’t thought about it. All I knew was that I needed help! What a disaster!
    When I made contact with the agencies, I made a number of assumptions, the first of which was that the agencies were in the business of caring for people with all manner of illnesses and knew how to handle them. As a consequence, I had no questions. They asked me when I wanted help and for how long. I hadn’t even thought about the timing until they asked, so I said, “8:00 am to 4:00 pm, seven days a week.” That would change, because I would need help feeding him, changing him and putting him to bed.
    Only one representative of an agency offered to visit me and to meet Jim. When she came over, Jim was walking around the living room pushing the hamper, a silly gift I had bought him years earlier since he was the ‘laundry guy.’ In his current condition, though, he often shoved it against the door to keep people out of the bedroom. This woman said, “If an illness like Jim’s were to strike my husband, I would be ‘outta’ there.” Wow! At least she came over. The other agencies took the information over the phone. I couldn’t use the assistance of the woman who visited us because her agency didn’t employ ‘licensed’ people; they provided companions – again, my learning curve.
    As I said, when I told the agencies that Jim was suffering from Lewy Body Dementia, I assumed they were familiar with the disease and how to deal with it, even if I didn’t. After some bitter experiences, I learned not to assume.
    Therefore, I assumed that the aides – mostly women – who were sent to care for Jim were trained to deal with dementia, and I was entrusting them with the most precious man in my life – no different from any new mom leaving her child with her first babysitter. What a revelation!
    Yes, as I saw it, they were trained – to complete timesheets, to get them signed and to turn them in on time at the agencies. Aides arrived late or left early to “drop off their time sheets.” The first aides who came to ‘help’ did not know how to handle Jim, so I found myself morphed from the weary wife of a