Rusty before he became sick
Parenting may be one of the most emotional experiences in life. At least it has been in my life and this week found me focused on Rusty. I have written elsewhere (Chapter 12 in my book DEREK) about Rusty’s medical struggles shortly after he came into my life. Regardless of his medical challenges, behavioral issues, and extremely low intellectual level, Rusty and I bonded. He has always held a special place in my heart.
There have been some hospitalizations over the past several years and this week another medical challenge came to the front – Rusty was taken to the hospital with pneumonia. He was not able to or had no desire to take nutrition by mouth. My first reaction was to jump in the car and head to the hospital as flashbacks of previous life-threatening allergies to medications came to mind.
Several years ago I had decided to place Rusty in a care home, partly with the hope to save my marriage and also to allow me more time to care for my younger and more medically-fragile sons. The placement did not save the marriage but did give me more time for my other sons and the house calmed a bit without his constant banging and screeching behaviors. However, I felt deeply guilty making this decision. Even though he was a young adult at the time of placement, many of my sons still at home were older than he. Yet, I made the decision to move Rusty. I felt like such a failure not to continue with his care because years earlier I had determined he was ‘here to stay.’ Although social workers and doctors had predicted we would only be able to manage five years, Rusty did stay for more than fifteen.
The care home where Rusty, and also Sean, reside is home to six adult men with various degrees of challenges. The house is kept neat and two residents share each bedroom. The rooms are much smaller than our home and the bathroom is not nearly as accessible as ours but they make it work. The men are showered more often than here at our house because of the number of staff available to provide care for the residents. I used to joke that if they kept Rusty so clean he wouldn’t know who he was. Regardless of how often I bathed him, he was always dirty from spending hours on the floor moving around and playing. In fact, I was greatly upset because the pleasure of being mobile as such would pretty much end once he moved to the care home with different rules and conditions to meet licensing requirements. Also, all the clients have very short hair, unlike our household where each has his own hairstyle, beard and/or mustache to express their individual personality.
Even after all these years I find it difficult and emotionally upsetting to not visit my sons more often. To mention a few reasons why: communication difficulties, different methods of care, cultural differences, and my own desire to be an ongoing mom and caregiver when I need to let go. I really have a hard time understanding the speech of most staff members in the three different care homes where five of my sons live. I become frustrated and then tend to shut down mentally. I am sure this gives the staff a strange impression of who I really am.
I also have my set ways of caring for my sons and it has been difficult to watch others take over and do many things in different ways (not that what and how they are doing it is wrong) and I try to hold my tongue and not become upset. After all, these are my sons who I have taken care of for so many years. I love them and feel I know them best ~ isn’t this true of most parents? I know what TV programs they like to watch, foods they especially like, music they like to listen to, and the list could go on. At any rate, Rusty was not physically under my care the week he was taken to the hospital. The care home staff immediately notified me and my heart skipped a beat or two as I read the text message.
Photo of Rusty sent to Marian from the hospital
No one really knows what happened. However, when a staff member noticed that he was unresponsive for a few seconds, there was concern. Perhaps he had a seizure? He soon became aware of his surroundings but he was pale and extremely weak and was immediately taken to a hospital.
I found time to go check on Rusty over the weekend. The doctor on call came to speak with me but it was close to impossible for me to understand her speech. Of course there was no ASL interpreter at this specific hospital but I got the idea of what was being recommended for his care. The hardest thing was to get them to understand that I am his conservator even though I had papers with me. I also had his Advance Health Care Directive, but the doctor wasn’t interested in that. I was frustrated and told her I would be back on Monday to follow up with everyone then.
Monday found me back at the hospital struggling to understand what was being said, especially by the two nurses who refused to remove their facemasks for me to speechread. (I need to order some of these new masks that are partially clear to allow me to see people’s mouths and pass them out if needed). They supposedly tried to find an ASL interpreter but couldn’t. Several people were in the room at the same time or in and out: care home staff, one or two nurses from the hospital, his doctor, a new worker from Good Shepherd Fund, a nurse from San Andreas Regional Center, and a speech therapist making suggestions about what should be done, how things should be done, and what changes need to be made. Too much!
Rusty staring blankly into space
During all of this, Rusty was pretty much just staring around with no facial expression, pulling off his nasal cannula and not happy with his IV. At times he appeared to be cramped and wanting to change position but really couldn’t move much because his right arm was restrained to keep him from pulling out the IV. The care home staff and I helped him scoot up in the bed a bit but no hospital staff made an effort to move him the entire time I was there, which was most of the day. The Regional Center nurse and I had a serious conversation. Between the two of us we completed a POLST form for the doctor to sign. All the time as I was speaking with people, these thoughts kept going through my mind: ‘Give me wisdom, give me courage for the facing of this time as I make decisions on Rusty’s behalf.’ I placed a kiss on his forehead, as I needed to leave and go home to care for some of my other sons.
After all my frustration of communicating with the medical staff I was relieved they finally listened to what I had asked – finish the antibiotic via IV and remove the IV. He was discharged to the care home the following afternoon and I am so thankful the care home would even consider taking him back (although I was mentally making a decision to bring him with me if needed). I suggested that the care home slowly begin feeding him orally but modify the diet and make the food soft to start with, give him foods he especially likes to begin, regardless of their nutritional value. My goal was simply to have him begin eating again. I guess I should mention that the day Rusty was taken to the hospital he was eating regular foods, chewing, feeding himself, and this is the reason I stuck with the decisions I had made.
The next day I was asked to go to the care home to sign some papers for a home health nurse. She arrived 45 minutes late and I was feeling antsy. This nurse had never met Rusty or me. The first thing she stated in the conversation was that Rusty needed a feeding tube. I mean, how do people draw these conclusions before ever meeting the patient or family? I struggled to remain polite as I said it was not my intention for Rusty to have a feeding tube. I made a few suggestions to a care home staff as I watched him feed Rusty soft foods and it was also obvious that the headrest on his wheelchair needed to be adjusted to allow him better positioning for swallowing. A couple days after he returned to the care home, Rusty was eating solid foods cut in small bites to make it easier for chewing and swallowing.
Have I left some of my readers with questions about why I struggle with my feelings about placing Rusty in a care home? Let me explain a bit and know that I am grateful he has a place to live and people to care for him. Rusty and I have been through so many life-threatening medical problems that it is hard for me to trust what others will do. Most likely if I had not been involved with the decisions this past week he would have had a feeding tube when he left the hospital. Can you imagine how I would feel if permission was given for surgery last week to have a feeding tube knowing that he is now eating again? That would have left me broken-hearted and he would have been deprived of one thing he enjoys, eating.
Another reason I struggle with out-of-home placement is his inability to communicate at a level my other sons can. All those who are in care homes can at least make their needs known to others at a much higher level than Rusty. They all have developed consistent YES/NO responses and can use icons or modified signs or speech to communicate. Rusty is at an entirely different level and I become upset thinking someone will not be able to read his body language to understand him or to meet his needs. I struggle emotionally on his birthday. I can send a card but really he would not have any idea who it was from even if care home staff mentioned it was from me. My other sons can understand that level of communication. I need to come to terms with these feelings. I’ve been dwelling on them long enough.
I understand the outcome of medical challenges may not always be like this past week. However, my thoughts of ‘Give me wisdom, give me courage for the facing of this time as I make decisions on Rusty’s behalf’ were answered.
Follow-up: Two weeks after his discharge from the hospital Rusty and Sean’s care home took a trip to Lake Tahoe.
Rusty at Lake Tahoe
Rusty and Sean enjoying the day at Lake Tahoe
