11 December 2020
Probably worse than being old and COVID positive is being old, COVID positive with Alzheimer’s.
Worse than being old, COVID positive with Alzheimer’s is old, COVID positive with Alzheimer’s, and alone.
In case you don’t know, visitors are typically not allowed to visit COVID positive patients. These patients are alone. Sure, the Medical Personnel give treatment but not necessarily the type of care patients receive outside a COVID diagnosis.
Brother went into isolation because of a COVID positive diagnosis. He was limited to a COVID wing at his Memory Care Facility. He could see and hear others, and he knew the people caring for him. The people caring for him, knew him.
He’s been admitted to the same local hospital twice since testing positive for COVID. None of the Medical Personnel know him. Over and over, we are told that he is confused, agitated, restless. Can you imagine what it is like to have Alzheimer’s that affects your short-term memory and wake up in an unknown hospital?
We’ve learned a few things about being old, COVID positive with Alzheimer’s, and alone.
First, we let everyone we spoke with know that Brother is not alone. He has a family that advocates for him and that we are the decision makers in his care. We sent a short bio to the Case Manager so that the Medical Staff would know something about Brother. I doubt his bio ever made it into his record or that anyone read it. Had anyone read the bio, staff would have not asked us the things they did about him.
Second, just because someone has a medical, nursing, or technical degree does not mean that they understand Alzheimer’s. A constant complaint about Brother’s behavior was that he did not want to stay in his hospital bed. The nursing staff members would say that they tell him continuously to stay in his bed. Telling an Alzheimer’s patient to do something and expecting them to remember is like pouring water into a bucket riveted with holes and expecting the water to be contained. We shared some techniques for helping Brother to comply with the staff’s requirements such as posting the request in writing on the walls of his room. One nurse did so. She shared that he was getting up from his chair, read the sign to remain in his chair, and he did so. Unfortunately, she shared, he only sat for 20 minutes. Twenty minutes is a phenomenal amount of time for an Alzheimer’s patient to stay focused on task! We are thrilled. She did not understand the significance and we give her credit for using the techniques.
Third, it is easier to chemically restrain an Alzheimer’s patient than to deal with their behaviors. He’s been medicated to keep him in his hospital bed, and he has not eaten a complete meal at any time while hospitalized. Brother has lost 11% of his body weight. In a conversation with his hospital physician, we said that he can not be chemically restrained. If he refuses to comply, a staff member must call us so that we can talk with him before giving him drugs. We got a call Monday morning from a nurse wanting to administer Ativan again. We asked what medications he had already had for the day and has he eaten. We realized he was missing a critical behavior medication and asked that medication be given as well as offer him breakfast. She said that she was going to order breakfast after the Ativan dose. After the dose, Brother would be asleep and, again, not eat. She did as we asked, and he did not require the Ativan.
Fourth, know the hospital’s terminology and do not be afraid when you hear it. Terms such as:
Failure to comply,
Noncompliance,
Aggressive behavior,
Harmful to self,
Harmful to others,
became the “clue words” that Brother would be sedated. We learned to ask for the specific behavior he exhibited. We understand that with COVID he certainly could not wander the hospital’s halls. We also understand that he is very social and enjoys the company of people. The hospital was unable, due to staffing shortages, to provide a sitter, even for a short duration, to stay with Brother. Thus, it was easier to create a condition for him to sleep, i.e., chemical restraint.
Fourth, get help as soon as possible. As long as he was in isolation at the hospital and COVID positive, we could not find a sitter service to sit with him. Once he came out of isolation, we hired licensed Caregivers. His life certainly got better. They got him to eat. Up to this point, we know only of one nurse that helped him eat a cup of applesauce. I think she felt guilty. When we called the night shift and asked how much supper he ate, she said he did not touch his hamburger. I replied that he had hamburger for lunch. Evidently his lunch had sat out all day and no one order a fresh evening meal. BTW, for COVID positive patients, this hospital would not reheat or refrigerate any foods from his room. We sent an Instacart order to his room of fresh fruits and juices. We were not allowed to bring ANYTHING to Brother. However, businesses could take items. We recommended to a Case Worker that such COVID constraints be published on the hospital’s website. She simply replied that would be nice. I said it would be nice to her when it was her father, or brother, or husband, or son.
Fifth, we understand that positive COVID cases are rising. We understand that Medical Personnel are stressed and tired giving their all. We found three of the MDs we spoke with great communicators and presenting signs that they genuinely cared about Brother. The last two MDs work with us for Brother’s best and well being. Other MDs, not so.
We also understand that business procedures from the past do not necessarily work effectively and efficiently under COVID. To reach Brother’s nurse, we call a floor number. The person that answers transfers us to a nurse. We can get an update if the nurse answers and has time to provide the update. Sometimes we would wait hours for a callback. It would make sense to have an Ombudsman available to provide patient updates. We made that recommendation and were told that would give someone else access to Brother’s records. So?
We call Brother’s room, but he does not answer the phone. I have suspected that the phone’s volume is turned low and I do not know. When we ask someone to help him with his phone, the phone is always answered. This change doesn’t cross the commonsense line.
Sixth and finally, expect screw ups. Most communication is telephonic. We don’t see the sender nor Brother. This creates an environment for miscommunication and missed communication.
We are grateful the hospital has a patient portal where we can see his lab results and summaries. Those documents are immensely helpful.
We are also grateful that the Nurse from Brother’s Memory Care told hospital personnel that the man in room 405 was not the resident they knew and call their “teddy bear.” She shared his wonderful characteristics and our hearts were warmed.
… these COVID conditions shall pass … we pray quickly.