I was recently notified that the County Board of Developmental Disabilities has approved me for a community waiver to move into an apartment with 24-hour care. I first heard about this program in 2004 when I was living in another county and applied thinking that the waiting list would be long.
I am developmentally disabled because I was injured before the age of 22. Before entering the nursing home, I lived on my own for almost 12 years aided by private caregivers. With some beginner’s luck, it went well for the first few years.
Coincidentally, I worked at that time by training community job seekers to be nurse aides/home health aides. Several times when I needed an extra caregiver, I simply hired one who had completed my own class. The program benefited me and other people with disabilities until it ended some years later.
When I was on my own, there were periods where I did not work and my care costs increased. Sometimes I would just spend more hours alone without aides. I also had no one to step in if there was a problem with a caregiver. If a caregiver became ill, quit or was fired, I had to hustle to find a quick replacement from the local home health agencies.
At 63 years old, I am not interested in moving back into the community. The anxiety I have from living on my own years ago is still present. I would have to wonder whether the next caregiver will show up, and I do not want to go back to being that desperate to live independently.
I must emphasize that the fear of losing caregivers was pervasive when I lived independently. A caregiver once told me she owed $5,000 to the IRS in back taxes, interest and penalties. She said she would have to quit if the IRS garnisheed her wages. But she said if I gave her the $5,000, she would not have to quit and could pay off the IRS, and that she could continue to work and repay me.
I briefly considered giving her the money. My attorney later convinced me that she could take the cash and leave anyway. He said I was better off spending my money on attendant care, and I followed his advice. But I felt manipulated by that aide and awfully vulnerable.
While I am writing of past experiences living alone, I also know living in nursing homes for so many years has caused me anxiety as well. But I think a facility is the best place for me to be assured care, food and a general sense of security.
Even though I do worry about short staffing in the nursing home, I know that even with the worst weather conditions, some dedicated staff will show up. And I never again want to be left alone as I had experienced when I was in the community.