Two years ago when I had to quit work suddenly and “became handicapped”, I had to make certain adjustments and self realizations. I could no longer be self-sufficient. I could no longer be independent. I now had to rely on others for help. I had to allow home health care into my home to give me physical therapy and ongoing monthly care.
It was a huge adjustment. I have always been a hermit. I never had close friends. My sisters were my closest friends and I didn’t need anyone else. I grew up always feeling “on the outside looking in” and that people, especially women coworkers. would always judge me on my house, my furniture, and how clean or messy it was. My house was my sanctuary from the world. It was where I could go and be safe. It was never shared with others outside of family.
Now, I was required to let strangers into my house, and they were usually women. Already apprehensive at life changes and unknown waters, I now had to trust strangers with my personal care and my personal space. Years of increasing immobility had added to my procrastination and inability to “keep the house presentable” and in perfect working order. Years of neglect and compromises were now being scrutinized by outsiders. This added a level of stress and discomfort to an already anxiety-ridden situation.
I soon learned that most of these caregivers were kind, compassionate, understanding and empathetic. I began to relax my guard somewhat. And then a few months ago, my home health care provider decided to regroup and no longer wanted to continue that service. They merged with a new company and an abrupt and sudden new change began.
I was used to a certain level of care and understanding. Now, there were unknown changes in protocol and operating procedures. I used to know when the nurse came, that she would come back the next month, on a certain day and what time. She was assigned to me personally. She knew my house. She knew my quirks. She knew my body and what I needed and how to accomplish that.
When the changeover began, I was once again apprehensive until I met them and found they were just as compassionate and eager to serve as I was accustomed to. And then, I would get phone calls the night before telling me they wanted to come by. The nurse who came the month before was new each time. I had someone new coming into my home every two weeks and never knew who it would be. Sometimes they would know my routine and sometimes they wouldn’t.
My former nurse had taken extensive notes and made sure she transferred them to my permanent records. Everything about me, how we “did” things, and what supplies they needed to bring were all there. Each time a new nurse came, they were always surprised. They would bring wrong supplies and say, Oh I didn’t know that. I learned to retell everything I could think of each time I got that evening phone call. And still, they constantly didn’t know things or were nonplussed at the care I needed. I’m sure there is not a “standard” for each patient. It became stressful and frustrating to continue to never know who would come and whether they would be ready.
I mentioned once that I didn’t like not knowing ahead of time and felt like I was never informed about my own care. I said that the previous month, the nurse was so nonplussed at my way of doing things that were different from what she was accustomed to, that it was not a pleasant experience. That actually got me a steady nurse for maybe 3 visits. I began to count on my “regular”. Having a change of catheter once a month is an intimate thing and having someone who was used to me, my handicaps and my physiology made things easier.
Once again, a new nurse called me tonight to tell me she was coming tomorrow for an assessment. I was immediately on the defensive. I asked ‘for what?’ And she replied ‘the “normal” nurse visit,’ though I can’t remember the exact term she said. I said ‘I was expecting a catheter change soon. not an assessment.’ She said, ‘that’s right.’ I then said ‘but that is not what you just told me.’ So, just to make sure she had seen my records and knew what to expect, I started asking questions. I made sure she would bring the correct supplies and she said yes and listed what she would bring. Well, that was wrong and when I corrected her, she said ‘oh I didn’t realize. I don’t have access to all of your records.’
I can’t tell you how comforting that statement was. The stranger who was supposed to come care for me, change out my catheter, did not have access to information I felt was need to know? In my frustration and anxiety I am sure I was a little short with her. Upshot? She ruined my evening for a couple of hours. It did cause me to make an online statement to the home health care agency about the changes and how the continuing uncertainty was affecting me as a patient. I don’t know if that will make things worse or not. Time will tell…