The last two weeks have been the longest days of my life.
If you have known Norm Nielsen, you know that throughout his life he was one of the most vibrant and active persons I have known. To the very day that he was diagnosed with Alzheimer’s nearly five years ago, he was a remarkable magic performer, builder, had a memory like no one I have known, never procrastinated, and achieved everything he put his mind to.
Alzheimer’s would change his life and mine, forever.
Two weeks ago, Norm was his usual self. Although he did not have short or long term memory, and no concept of time or place, he was still able to speak and read, he could walk, and with gentle reminders, he could groom and dress himself.
Between ten and seven days ago, Norm’s condition declined ten-fold. All of a sudden, he was falling 3 – 5 times per day. And during those times, I was able to pick his 150 lb body up and get him going. After a couple of days like that, his ability to groom himself was gone. For a few days I had to shower him, dress him from top to bottom, and get him ready for the day. Not to mention having to physically lift him each time he needed to go to the toilet. Which meant that I did not sleep for days. After four days of this condition, he stopped eating. The reason: It was difficult to swallow.
Throughout this ordeal, I am contacting his neurologist/geriatric doctor. In these technological times, these fancy clinics have these so called “electronic portals” in which you send a message to your doctor. Having to communicate via a computer does remove the empathy and humanity of the health care system. A nurse from the doctor’s office contacted me and told me that due to the coronavirus, they are not seeing any patients right now.
Since she had zero initiative, I told her: This could be due to the decline in his level of dementia; or he could have an infection of something other than the dementia that is causing these symptoms. Is there a way to check him?
She recommended this Health Direct services, and gave me their telephone number. I called them, and they requested some sort of paperwork – which I did not have. No paperwork, no service.
At this point, in my mind, his neurologist was out. They would not be able to provide the help I needed. After quick thinking and a few phone calls, I managed to get Norm cardiologist’s personal cell phone. I called her last Monday afternoon, described the symptoms, and she said: “He probably had a small stroke. Let me order an MRI. Can he walk?” I said: “No.” “Then take him to the emergency room,” she said.
I have had plenty of experience with taking people to the hospital, and the waiting room at Summerlin Hospital was empty this time. There were only three patients in the lobby: A little girl held by her mother with fever, another coughing gentleman, and Norm and I.
I asked them… How come so few people? They told me that Covid-19 is keeping people away, so what they were getting were real emergencies. People these days were not using the ER for frivolous reasons.
They did allow me to be with Norm at the ER. Due to his Alzheimer’s he needed someone with him that could check him into the hospital and provide information for the doctors.
He did have to remain in the hospital and get a room upstairs. But I could not go in. Rules are strict these days. No visitors at all were allowed.
I have no idea what could have been going through Norm’s mind. With no memory, and no concept of time or place, I guess he might have been afraid and confused. Or, perhaps, which is what I would like to think… In a blissful state of glee, given all the attention given to him by the staff. I will never know.
It was frustrating not to be there as Norm’s advocate.
Rather than bother them every few hours to find about his welfare, I befriended the head nurse and told her I would only call once per day. I told her… “All I want is a full report.” “What is the best time to call you?” She kindly said: “Later in the afternoon, after all the tests are administered to Norm.”
Tarika was the nurse’s name. One of many in these scary healthcare times. She was very sweet and thoughtful and there was a time when she went out of her way to make a telephone call and put Norm on the line.
After a few days, though, no news from a single doctor… I had to ask the nurse if that was ever forthcoming. It was not until the end of the third day… Or Thursday afternoon… That I heard from Dr. Bamman from the hospital. At the end of the conversation, it seemed that Norm was the “picture of health”. No stroke was visible on the CT Scan or MRI, there was slight plaque formation seen on the carotid ultrasound, normal for his age. Blood tests were normal, etc.
Yet, he can no longer walk, he slurs his words, he does have difficulty swallowing, and has declined cognitively.
My own amateur theory (from past experience with our friend Gary Darwin, and my own mother, who had dementia): Norm had a mini-stroke or a TIA (transient ischemic attack). These are so tiny, that our imaging capabilities won’t see them, yet could be so powerful, that they might account for his sudden decline.
The decline is such, that unfortunately, I don’t find myself capable to physically care for Norm at home. He needs someone to help him walk, and to even perform the most basic activities like going to the bathroom. Although I am able to lift him, doing this along with managing Nielsen Magic and taking care of the home would become a herculean task.
I decided to contact the Alzheimer’s Association, and requested a list of Memory Care Facilities in our part of the Las Vegas Valley.
I called all of them, including one located two blocks away in our neighborhood. Alas! The neighborhood facility did not have availability, and I interviewed the others by phone. With the covid-19 pandemic no visitors or tours are allowed of any senior facilities in area.
Sight unseen, I picked one. Factors were: The price, service, website, and the customer service and the way they treated me while on the phone.
So far, so good…
I have probably made the most critical decision in the life of a caretaker: Moving my loved one away from home to a nursing home situation.
At this point I don’t know when I can go and visit him, as visitors are not allowed until after the pandemic is over. I do keep in touch with the nursing staff, all of whom have been compassionate and understanding of the situation.
I do hear Norm was comfortable the first night, watching a movie late at night with the nurses. Lol!
I never thought this would break my heart, but it does. I really, really miss my best friend.
— Lupe Nielsen
(April 5, 2020)