There Are No Words — No Stone Left Unturned

Every now and then I miss a week of writing my blog. Last week was one of them. I wish I could say that this time was because I was doing something fun. That I was on vacation in some faraway place. Unfortunately, that was not the case.

If you have been reading my blog faithfully, then you know that Travis has had a few recent episodes of rage, meltdowns beyond my level of expertise. A few weeks ago, I had asked his psychiatrist to admit him to a hospital while we worked through medication changes to get him stabilized. The psychiatrist called Travis and determined that he was fine. He believes that Travis is manipulating me to get things that he wants.

Travis may have been fine in the moment that the phone call took place, but he isn’t fine. I needed the psychiatrist to trust that I can tell the difference between when my son is being manipulative and when he needs help.

If asking for Travis to be hospitalized was a common request from me then I might be able to understand the perspective of the psychiatrist. It isn’t.

I felt helpless as I watched Travis’s coping skills deteriorate. He became enraged over simple slights. Travis screamed at me that the medications were to blame. The meltdowns became more regular. And more scary.

Last Monday he was once again experiencing extreme rage. Tracy went to town and took him to the ER. Unfortunately, I was home sick. Tracy got the flu first and was further along in his recovery.

As is always the case, the hospital was reluctant to admit Travis. He has a psychiatrist, a therapist and a supportive family. And is medicated. Yada, yada, yada. Travis had even agreed to go. He recognizes that he needs help. He agreed to go with one stipulation, that they keep him until they got the medications right. I told him on the phone that I was going to fight hard for that to be the case.

Tracy asked the crisis manager to contact me. I was surprised that she called me from a different hospital than the one Tracy took Travis. Is the other hospital short staffed because of Covid?

We had a hard conversation. I simply refused to take no for an answer. I shared that if something happened to Travis or anyone else due to his rage that I will sing it to the world. All you have to do is turn on the news to hear about all the bad things that can happen when an individual is suffering a mental health lapse. And then people ask, “Weren’t there any warning signs?”

I told her if anyone got hurt as a result of his rage, I would tell the world that I begged the hospital to admit him. Because even with all of the services in place for Travis, our family needed help to get him stabilized.

The crisis management staff member actually told me that it was near impossible to find a psychiatric hospital bed for someone with an intellectual disability. She said the hospitals were not equipped to handle individuals with disabilities. This is the first time I had ever heard this information. Is the real reason Travis has never been admitted in the past because he has an intellectual disability? And he is on the autism spectrum?

I was shocked. For three reasons. One being - discrimination. The second being - if the hospital with the professional psychiatric staff are not equipped to help him, how the hell do you think the parents are supposed to do it? Third, it is not uncommon for individuals with intellectual disabilities or autism to also have a psychiatric disorder. Are we just going to ignore this population?

Studies have shown that adults with intellectual disabilities had significantly higher prevalence for five of the mental health conditions than the general population. Per www.psychiatric times.com, “Individuals with ID have a higher risk of psychiatric disorders than individuals with intelligence in the normal range”.

Ultimately, I told the crisis management staff member that I didn’t care how hard it was, find a bed. She said that she would see what she could do and get back to me. I thought that meant she would be calling me back later that day.

I didn’t hear back that day. I talked Tracy into coming home that evening. I didn’t understand his hesitation. Travis is in good hands at the hospital. At least I thought so.

Early the next morning Tracy and I both drove to the hospital. Only one of us could go in. I was dismayed by what I found. Travis was in a tiny room, about the size of a closet. Laying on a roll away bed, not a regular hospital bed. So he was unable to adjust it to sit up. There wasn’t a window in the room. The only furniture in the room at all was the bed. There wasn’t a TV. Or a phone. Nothing.

Tracy said the hospital staff told him that Travis would be moved to a room the evening before. Only he never was.

The room was off the beaten path from the other ER rooms or activity. The hallway was guarded by security. It was not a room that anyone would voluntarily choose to go.

Travis was not brought into the ER during a rage. Or by policemen. He walked in by his dad’s side, asking for help. He wasn’t behaving in a dangerous way. And yet he was treated like a criminal. Or a caged animal.

Tracy said they were there for hours before Travis got something to eat. He had to ask a security guard if he could tell a staff member that Travis was hungry.

You see if Travis were in a regular room there would have been a menu in the room for Travis to order from. There would have been a nurse to tell him or Tracy how to use the phone to order food.

Travis was wearing heavy paper-like pajamas. Which was making him extremely uncomfortable. Because the way they felt against his skin. Without underwear. The hospital took away his clothes and all his belongings. He did not have his phone to listen to music. Travis told me he told hospital staff about his sensory issues. Travis was not treated with dignity.

So yes, he was pacing. What else was he going to do? And yes, he punched the wall and banged his head on the wall. Because no one was listening.

I spent eight hours with Travis in the closet the next day. I again had to ask the security guard if Travis could get some food. A nurse told me that she had checked to see if he wanted breakfast at 6am. I don’t know about you, but I am not ready for breakfast at 6am. I still would want something for breakfast before almost lunchtime.

The hospital didn’t give Travis his bedtime meds. Tracy had asked them to call me to find about Travis’s medications. They never did. Travis’s current medications are listed in his online chart. Which this hospital has access to. But they did give him something to calm him because of the pacing.

It took every ounce of my own control not to pace in the room. I felt confined. I can only imagine how Travis was feeling in this situation. He did make a comment to me during the day that this is how he gets treated. It reminded me of the time I found out that one of his school settings put him in a closet sized room with four block walls and no furniture. The school called it the “Quiet Room”.

Is this how we treat our most vulnerable?

I’m thinking that if Travis showed up in the ER with a serious physical medical complaint he would have been admitted to a room with a hospital bed, a TV, a nurse that checked on him regularly, allowed to have his phone. He would have been comfortable.

Then I thought, if Travis came into the hospital with a serious mental health complaint, but had better health insurance, would he have been admitted to a hospital room?

An administrative person came to talk to me. She reiterated how hard it is to find a psychiatric placement for an individual with disabilities. I cannot believe hospital personnel even say that out loud. Discrimination much? While you are finding a placement, can’t the hospital at least try to make Travis comfortable?

Travis told her he wanted his clothes. He started to tear at the pajama pants. The woman asked Travis to please not tear the pants. I wanted to laugh out loud. Seriously, because they cost five cents a pair and you don’t want to replace them? And if Travis could follow her request and manage his anger, we wouldn’t need the hospital.

Later I was told that they found a placement, in Colorado Springs. Two hours away. They put in a request for transport, but couldn’t give me a timeline as to when transport would take place. Hours later the ambulance staff arrived. Travis told me he needed his eyeglasses. He said they were in the hallway on the nurse’s cart. Only they weren’t.

If Travis had a table in his room, he could have placed them on it when he wasn’t wearing them. The one thing they let him keep ended up lost. A staff member found them in the “lost and found”. Unbelievable really. Since he was the only patient in the area, who else would they belong to?

Once Travis was on his way, I called the crisis management team member I had talked to on the phone the day before. I held back tears as I told her about the way Travis was treated. I told her I wasn’t mad just for him, but for everyone they hide away in that room. She gave me a patient representative phone number to call.

I told her I intend to call that number. And I also intend to write a letter to the Colorado Congressmen and Congresswomen about Travis’s experience. Because it is not okay. It shouldn’t be that hard to get a bed when you need psychiatric stabilization. This could be part of the reason Colorado has such a high rate of suicides. How often are people being turned away that really need help in that moment?

Larimer County has a behavioral health facility currently under construction. It came before the Larimer County voters twice before it was approved. It is too bad it wasn’t approved the first time, it may have been ready by now. I decided to check the progress today, it is expected to open mid to late 2023. I found this part of the article on www.larimercounty.org/behavioralhealth/facility interesting:

Who will it serve?
This facility will serve anyone residing in Larimer County in need of urgent intervention for mental health or substance use regardless of race, color, ethnic or national origin, ancestry, age, sex, gender, sexual orientation, gender identity and expression, religion, creed, political beliefs, or disability.

Or disability. I wonder if all the psychiatric hospitals websites say the same thing?

I wish someone would have offered us some information about what to expect when your loved one is being taken to a psychiatric hospital. Like bring their medications and a few days of clothes for them. I drove to Colorado Springs and booked a hotel room. I had no idea what to expect, remember Travis had been placed on a 72 hour hold once before, only to be released after one day. Imagine my surprise when I was told that the hospital doesn’t allow any visitation due to Covid.

I ended up staying two nights before anyone at the hospital could give me a plan of action. Travis is still there.

While telling this story to a friend, she said, “I have no words”.

To which I replied, “There are no words”.

“Sometimes there are no words, no clever quotes to neatly sum up what’s happened that day. Sometimes, the day just ends.” - Dwivedi

“For some moments in life there are no words.” - David Seltzer