Advocating to Stay with a Hospitalized Dialysis Patient

My husband does nocturnal home hemo. My greatest fear has nothing to do with dialysis itself, but with him needing to go to the ER for any reason and needing to be admitted. With all of the restrictions on visitors, I really did not want to have to be confrontational when already stressed that he needs to have an advocate with him at all times.

Over the past week he has been feeling off, making this even more of my mission to change how things are at the hospital. First, I wrote a letter and sent it to every contact I could find for the hospital including posting on all of their social media pages.

This did get their attention, and today I spent the morning talking with the Patient Experience Department. We talked in even more detail about why he needs someone with him 24/7. After she talked with others, I now have a letter to show any staff member who says I can't be there stating that yes I can—any time Jeff is in the hospital or at a medical appointment. It is so nice to have the stress gone a little, so I can possibly take him to the ER and not have to fight for him to have me there.

If this is a concern of yours start speaking up now to get things changed. I still want things changed for others also, but one step at a time. A day after my letter they did open up visitation with shorter hours and one visitor only again. Did my letter have anything to do with it? I don't know, and I don't care. What I do know is that I am trying.

Below is a copy of my letter if anyone needs a template or an idea of what to write. I did also send mine to the local papers, but haven't heard back from either of them yet.

To whom it may concern and anyone who may be able to help make changes,

I just want to express my concern with how I strongly believe the best care of the patients are not being taken into account right now for illnesses that are not COVID-19 related. Caregivers are the ones who must deal with your patient when things go wrong at home. When the body is acting weird and concerns come up it is on us, yet we are not allowed to be with our loved ones during this time. While you are trying to minimize the risk of COVID-19 infection, you may be harming some of these patients. I need to write this letter to anyone who may be able to help to know that I did not just sit quietly when seeing a problem—that I did try to find a solution that would work for all.

Many patients need an advocate to help them communicate with doctors, nurses, and hospital staff. During many past hospitalizations, if I had not been with my husband when he was talking with doctors and nurses they would have never known the truth of how he felt or was doing. He would mention concerns to me, but when someone entered the room who could help he just said “everything is fine.” I was there to correct this and get the needed care. Medicines mess up the brain, side effects happen from medicines, some patients need help with balance going to the bathroom, encouragement to get up and move around so muscles don’t deteriorate is needed, and so much more. Nurses and staff have multiple patients. They can’t do it all. Loved ones are needed.

What I have said so far does not even address the mental side of being hospitalized. Firsthand experience showed me what dementia is and how it affected my husband. It can hit hard and fast. I have known many elderly these past months giving up on life as they didn’t understand why they could not see their loved ones and thinking they would never see them again. This gives the nurse and staff even more issues to worry about. 

Yes, I understand that extra steps would need to be taken. I understand that not all family members are a help, and some are actually a problem to the nurses. I have seen many I thought needed to be kicked out if they didn’t stop being demanding and inconsiderate to the staff. These issues can be addressed and dealt with. Yet all should not be punished because of one group. A visitor can be limited to one a day, only a one time admittance, no leaving the room for walking around or going to vending machines and more. We can work together to find a solution to benefit the patient. 

I ask that you please reconsider allowing a loved one to be present during a stay. Right now, even if my husband would need to go to the ER, I would delay it and most likely not take him in when he needs to if he can’t have an advocate present. Care is more than just protecting from the Coronavirus. Yet that is all that is being focused on. Loved ones need to stop dying alone with no one by their side. Never underestimate the power of a loved one’s voice or the comfort given while holding a hand.