Wheels was admitted to the Emergency Department several times
. . . . during the last three years of his illness. Each one of those stays is a story unto itself, each with their own lessons. But one common thread was the need for a family member to be his advocate. This was a role for which I was ill prepared. Not just because he was no longer able to speak for himself- which in itself is a big loss/adjustment, but because I had little knowledge of “hospital”.
I did have my packet of information with me each time. But most doctors only confirmed the list of medications. Since he had a relatively unknown disease that affected his speech, it seemed to me rather important that they know about that. But the information was waved away every time. And then they would comment that he did not react in the way they expected – well, he does have this disease and it effects him this way. OH!
Then, a-first-weekend-on-the-job, female doctor actually took the information and tried to search for more. She came back to me and said, I am not finding much about this disease – what can you tell me. I said everything I know is in the little booklet I gave you and that is ten times more than what I was told when he was diagnosed. She asked about limitations and together, we figured out what worked best for him. She respected what little I knew and I respected and appreciated her honesty. And we solved the problem as a team.
That is the ideal situation – mutual respect of persons.
Respect on my part for her medical knowledge and the press of time in the Emergency Department and respect on her part of my unique knowledge as a full time caregiver responsible for someone who could not speak due to a disease she’d never encountered. We only interacted over a couple of hours in the Emergency Department, but it was a pivotal experience that became the basis of my advocacy afterwards.
Do establish the basis of mutual respect immediately.
In the Emergency Department, things move fast and niceties take a back seat. Have the list of medications written and ready to hand over. Generally the admitting personnel will take make sure it is in the computer and the doctor will repeat to confirm. TELL the admitting nurse information about the patient’s conditions- in list form – outside the reason you are there. They will enter the list in the computer and correct information already in the database – IF they have time. You can also get feedback from this person as to what might be considered the most important information to share with the doctor. I was afraid I would leave out something important so I would tell them all I knew about Wheels’ diagnosis upfront. It worked better to share only what was needed when it was needed.
YOU may not have this problem, but I am a talker. Don’t.
Keep your interactions as focused as possible.
And do NOT let anyone talk you into something with which you disagree or do not fully understand! Speak up if you feel something is not right. We brought Wheels in one time for breathing issues All the admitting doctor would talk about was his heart. Then took him off a crucial heart medicine, because I was apparently not loud enough with my objections. Turned out Wheels had lung cancer and the heart was fine – once he went back on the medication.
I also believed the “myth” that computers linked information everywhere.
Not true ,especially if you are new to an area. Even as a long time resident and using the same hospital for years, things can still fall out or be missed during entry. One doctor told me he never checked the computer because there was too much “stuff” to wade through to find what he needed from another hospital. Do not assume that the hospital has all the pertinent information – ask! Also, do not assume that everything is accurate or up to date. At one time Wheels had four different dementia diagnoses – nobody seemed to know or care where they came from and it took some real persistence to finally get the accurate diagnosis in the records. It does make a difference!
Tell the doctor a quick summary of other conditions that need to be considered in emergency treatment.
By verbally summarizing the information you need to convey, you get instant feedback as to the doctor’s understanding of what you are conveying. Choose only the most pertinent items. Not being able to speak is one of them. Telling them, gives them a chance to ask questions for clarification. It also allows you to mention one or two more that may have bearing on the situation, but NOT mention the dozen others that don’t.
I condensed my explanation of nfPPA/FTD from a ten page booklet into: “He does not speak because his brain has begun to degenerate in the speech area. It is a specific form of dementia. He does understand if you speak slowly, but often does not/ cannot answer direct questions.” Usually the doctor would try a question or two and then turn to me, and confirm Wheels could understand – actually crucial for their knowledge of his abilities and how he would respond to treatment. Additional questions and answers were directed at me, but Wheels could hear. Occasionally, I would ask him something for confirmation that he was still following. The best doctors would then conclude by looking at him directly, telling him briefly what would happen and often shook his hand before leaving as a way of saying, I see you. That gesture on their part was worth a million bucks to him!
If your loved one is admitted to the hospital, repeat the process with the nurses.
Generally, at least in my experience, this is more relaxed as they are not usually as rushed and have more time. If not, they will make needed computer check in and updates, then make arrangements to get back to you soon. If you have questions, this is the time to ask. They can guide you to food, water, a rollaway bed for the room, the blanket warmer and more. This is also time to mention specific needs of the patient. One we mentioned, after Wheels lost the ability to see downward, was the need to keep him elevated so that he could see someone coming into the room. He couldn’t see the person, until they came to his side and spoke, if he was lying down. Rather unnerving for all.
Nurses, therapists are also more likely to check out any additional information you provide.
I would leave the booklet on Wheels disease on the computer station. Individuals would often tell me how much they appreciated finding out about his disease. I brought communication cards and left them on the bedside tray. Those were well received, even though most workers were not familiar with them. The aides would look for the icon for shower or sit in a chair. Even the meal delivery people would take time to point to hello on a card.
Wheels would become extremely anxious if taken somewhere without me.
I learned to respectfully tell the nurse that I wanted to accompany him for x-rays (or whatever). I was never turned down. I would tell the transport team the same thing and they were usually solicitous – making sure I turned the right corners as we sped down the hallways. I would do what they told me, but insisted I had to be where he could see me if at all possible. There were a couple of times when I was asked to stay in the control room, once I wore a lead apron, but most of the time my request was accommodated with no fuss. It helped to keep him calm and I was careful to stay out of their way. And to thank them afterwards.
—–written by Charlene Vance —–