by Valerie Grieve
Hospital drama has always been good fodder for TV—Dr. Kildare, St. Elsewhere, Grey’s Anatomy, just to name a few. The characters always include brilliant, heroic doctors and caring, nurturing nurses. The parade of patients moving through the hospital provide a variety of story lines about the human condition and social issues of the day. Relationships between the staff create long term stories that keep us tuned in from week to week to see what happens next.
Recently, I was hospitalized for three days in a small town, Ontario hospital and witnessed first hand some real life, hospital drama that has left me feeling troubled.
I spent the first night in the ER on a gurney that hurt my arthritic back. In the morning a bed became available in a wardroom with two other women. I was grateful to slide into a real bed.
My roommates were a teenaged girl and an elderly woman. Normally I am a very outgoing and social person. I was in pain and on drugs that made me very sleepy, and I did not feel like socializing. I was quiet and an observer of the passing show.
I was entertained by the teenager’s boyfriend with the frequently buzzing and ringing cell phone, the disapproving mother who scolded him for coveting the girl’s jello (among other things), and several teen friends dropping by to visit. Everything is huge to a teenager. There are no minor problems. They are the kings and queens of melodrama.
Through listening to the teen’s mother talk with the elderly lady’s husband, I learned that she was in her late 70s and had an untreatable cancer. She was small, petite, and looked very frail. She was unable to get out of bed and she needed a lot of care. Her husband spoke of her as a good mother and said they had had a good life together, travelling through Canada and the US. They lived in a larger town that was about a three hour drive away and had its own major hospital. There was no bed for her there, and so she found herself in our hospital. Despite the distance, she had frequent visits from her husband and son.
As my nurse was going through the admission procedure with me, asking questions about medical history, drugs, allergies etc., lunch came. The elderly lady, let’s call her Joan (not her real name), called out, “Nurse, I need help to eat my soup.” My nurse responded, telling her that someone would be in to help her with her soup in a few minutes. Joan repeated, “I need help to eat my soup.” The nurse ignored her and continued with her questions to me. Joan rang her bell, and I heard a voice over a speaker ask her what she needed. “I need help to eat my soup,” Joan responded. The voice assured her that someone would be along shortly. About two minutes later Joan rang her bell again, and then again. I thought to myself, “That is one impatient woman. Does she not know how short staffed hospitals are, and how busy nurses are?” I felt annoyed with her. About ten minutes later someone came in and helped her to eat her lunch.
I settled in and drifted in and out of sleep. Through that afternoon I was awakened often by Joan, ringing her bell and calling out for nurses to come and find her glasses, put her hearing aids away, move her table closer, and so on. She could not seem to wait for anything. Her requests were repeated about every two minutes, pressing her bell and calling out. The nurses were trying hard to be professional and patient with her, but I could hear the increasing irritation and frustration in their tone. At one point I whispered to the nurse who came in to take my vitals, “Please tell me she takes sleeping pills at night.”
Her husband and son came in to visit. Let’s call her husband John and her son Ron (not their real names). After about half an hour Ron said he had to go somewhere to do something but he would be back. Five minutes later Joan demanded that John go get Ron. John explained that Ron had to leave but would be back. She was angry and repeated her demand, several times. “Just go get Ron.”
John asked, “How can I do that? He has the car and he is driving about. Am I supposed to run the streets to try to catch the car?”
Her response was like a broken record. “Go find Ron. Go find Ron. Go find Ron.” I could not help but think how awful she was being to her husband.
John asked, “How am I supposed to find him? He has the car.”
Joan replied, “He is out in the parking lot, standing beside the car door. Will you please, please, please just go get him? Just go to the door and look out and you will see him. Please, please, please go get Ron.”
That is when I realized that Joan had Alzheimer’s disease or dementia. That understanding changed everything in my mind, and I felt bad for the unkind judgements I had made of her. I also felt very sorry for her husband. When Ron did return, she demanded that he take John home and repeated that demand til they left. It was clear that no-one had enjoyed that visit, not Joan, not John, not Ron, and certainly not me. I felt sorry for the three of them.
In the night my nurse arrived to take my vitals on schedule. Joan awoke. “Please nurse, I need help to turn over.”
He responded, “Yes Joan, just as soon as I am finished with this patient.” In the next five minutes she rang the bell twice, asking for help to turn over. My nurse finished with me and went and helped her.
Joan was awake at that point, and she started to ring the bell over and over again, asking for help to find a missing hearing aid, to move her table closer, get her a pillow, and on and on. I heard a nurse tell her that she could not ring her bell every ten minutes. An hour later two nurses came in and told Joan that they were going to put her into a chair and take her to the nurses station til she was sleepy so that the other patients in the room could get some sleep. I felt bad about that, but grateful at the same time. I watched them roll her out. She looked comfortable, covered up with pillows tucked around and behind her, in a chair that looked like a recliner on wheels.
The teenager must also have been awake, for the next day she told her mother about Joan being taken to the nursing station. When Joan’s husband came to visit, Joan was sound asleep. The teenager’s mother began to talk to him, and told him that the nurses were being mean to Joan. I was a little shocked because I did not think they were being mean, but it was clear that Joan was trying their patience. The mother told John that they put her in a chair and had her up most of the night at the nurse’s station. He was very upset and said he was going to try to get her transferred to the hospital in their town. The son arrived, and he went to talk to the nurses at the desk to “set them straight.”
After John and Ron left, Joan started to call for the nurses to go get Ron, insisting he was just in the parking lot standing beside the car. The demands were non-stop, and the nurses began to ignore her. She saw me get up to go to the washroom and started calling out to me. “Lady, please, please, please go get Ron. If you just go to the door you will see him standing beside the car. It’s a navy blue car.” I did not know what to say, knowing nothing I could say would get through, so I ignored her too and felt bad about doing so.
The rest of the day and the night continued on in the same way. The next morning Joan rang the bell asking for help to go to the bathroom. Nurses responded and put her on the commode. She said she was done and they put her back to bed. Two minutes after they left the room she rang again saying she had to go number two.
A clearly irritated nurse returned and said, “Joan, we just had you on the toilet,” and left. The calls continued for help to go to the bathroom and were ignored. Joan changed her plea, calling for someone to come change her dirty diaper. The calls were ignored. This went on for about an hour. The teenager’s visitors were clearly upset by it, and so was I.
When my nurse came in, I told her what was going on and she said, “You don’t know what she’s like.”
I said, “Yes, I am her roommate. I know what she is like. But how do you know that this is not a real request? It just seems cruel to ignore calls to put her on the commode and leave her in a dirty diaper.”
My nurse said, “There is nothing I can do. I am not her nurse.”
I replied, “As my nurse then, can you please tell them that I am distressed by it, and so is the other patient in the room?” About two minutes later two nurses came in and tended to Joan.
Joan seemed to have some cognition still working. I think she saw that this request got a reaction, and from that point on she rang the bell every ten to fifteen minutes asking to go to the bathroom. Later in the morning, a teen friend visiting the teenager got up and stormed out of the room to the nurses station, demanding that someone come in and help this woman.
Shortly after that, I was released from the hospital. I came home and went to bed and slept, soundly, for the first time in three days.
I am happy to be feeling better and happy to be home, but I am unable to stop thinking about Joan. It is 3:00 am and I had to get out of bed and write about it. I am deeply disturbed. Joan will not be going home. She will spend her last days in hospital. I worry about the quality of those last days. I am left with questions and no answers.
I wish there were some mean, cruel nurse or nurses that I could point at and demand that they be fired. I cannot. Cut backs to healthcare spending have left the hospitals short on beds, staff and resources. The nurses were always in a rush, running from one patient to another, not quite able to do everything they needed to do. Through my stay, I found the nurses to be professional and caring. They were able to meet my needs. Even the best natured nurses when overworked can become frustrated. How do you know when a patient really needs to go to the washroom if she is asking to go every ten minutes? At some time, the need will be real. How do you know when to ignore and not to ignore it? With other patients to look after, a nurse could not spend her entire shift taking one patient back and forth to the bathroom.
I wish I could blame Joan and say that it was her fault for being so difficult and demanding. I cannot. She has dementia or Alzheimer’s and that is not her fault. She is terminally ill and far from home. I don’t know how much she understands about her illness, but if she understands anything, she must be frightened. I hate to think what it must be like for her, unable to get out of bed, take care of herself, or even feed herself.
There are no facilities that are equipped or sufficiently staffed to address Joan’s needs. A frightening thought is that the number of elderly patients requiring care is increasing. I am at the tail end of the baby boomer generation. We hope to live a long life, but none of us know what the end of our lives will be like. As we age, the risk for cancer, dementia, and Alzheimer’s increases. I don’t know if one day I will be like Joan. None of us know.
I feel sorry for Joan, and I am sure anyone reading this would. Let us just hope that if this should happen to us, that there will be some place that can look after us, and we will not be left sitting on a commode or in a dirty diaper for an hour or more.
I have no answers, only disturbing questions. I have some suggestions, and perhaps you can think of others. If so, please comment to add them.
1. Increase healthcare spending for special needs patients. My needs and the needs of the other woman in the room were met, but the nurses found it difficult to cope with the needs of Joan given the number of patients in their care and the available time. In schools there are educational assistants who can be assigned to students with special needs. Perhaps money could be allotted in the healthcare budget to provide nursing assistants for special needs patients such as Joan.
2. Provide training, support, and strategies to hospital staff to help them cope with dementia and Alzheimer’s patients. Don’t leave nursing staff with an impossible task and no guidance or assistance to cope with the increasing needs of these patients. Provide staff with meeting time to share information, ideas, and strategies on how to cope with patients in their care. An example of a strategy that might help might be for every nurse on the floor, not just one nurse assigned to her, to check in with Joan once every hour. That would mean that if 5 nurses were on the floor, roughly every 12 minutes someone would pop in to see Joan and ask if she needed anything, without her having to ask. That simple, extra attention might be enough to eliminate the repeated ringing of the bell and provide some reassurance to a frightened woman.
3. Enlist the aid of volunteers. Volunteers are limited in what they can do. A volunteer visitor to simply come in and sit with Joan, hold her hand, put her hearing aids away, move her table closer, or do simple little things could go a long way toward reassuring Joan and lifting some of the load off the nursing staff.
There is something you can do, right now, a very simple thing. Like this post and share it on facebook, reddit, twitter, and other social media websites to help raise awareness of this problem. Send a link to it to your Member of Parliament. Do it for Joan. Do it for yourself, because one day you might find yourself in Joan’s situation.