Ducks in a Row

A couple of weeks ago I compared my life to being on a rollercoaster ride. Today I am in the off kilter, uneasy feeling in my gut section of the ride. With the hope that in the next week or so I will have disembarked from the rollercoaster ride altogether, at least for awhile.

I keep checking the boxes on my to do list. Here’s where we’re at.

This morning I dropped off Sheila for her five day training. The check-in staff put her in their side yard and removed her leash. One of the kennel techs came for her with a leash in hand. He opened the side door and Sheila whipped in and proceeded to run circles around the front room and in and out various other rooms. It was a bit funny watching the staff try to catch her. They certainly have their work cut out for them with this girl.

Last week we met with a new psychiatrist at a center that offers a variety of treatments. Travis has shared with us time and time again that he feels like the pharmaceutical medications have been doing him more harm than good. We were certain that we just needed to find the right prescription in the right dosage and all would be well. Because that is what the doctors told us. We asked him to be patient.

Only we haven’t found it. He is angry for many reasons. This is one of them. He feels like he has been a guinea pig for years. With no real improvement in his mental health. Taking these types of medicines long term can also affect one’s physical health.

Travis’s current psychiatrist took him off Abilify because he felt that it was contributing to his weight issue and Type II diabetes. I had a hard time understanding how that could be true because Travis had been on it for some time, and his numbers stayed in the prediabetic range for quite a while. They started to increase a bit during 2020, and then a sudden uptick to dangerous levels these last few months.

His psychiatrist said that he has seen it with other patients. The effects get worse over time. When trying to figure it out, we determined that once Travis started the injection form of Abilify, his prediabetic numbers crossed over to the point where he was diagnosed with Type II diabetes. The doctor attributes that to having a higher dose because Travis was forgetting to take his pill form daily.

The psychiatrist wasn’t willing to try a lower dose. So we weaned Travis off Abilify and started Haldol. Only Haldol caused an angry rash along the back of Travis’s legs, all the way up to his upper thighs. An old tic came back, a clicking noise Travis makes with his throat. And it didn’t work as well.

The psychiatrist offered up two different medication options. I did some research. One of them said that you should not use it if you have liver disease, brain damage, severe depression or a blood cell disorder. Among other side effects, it also said it could cause a rash or a tic. Travis does have fatty liver. And severe depression. And a blood cell disorder. Hmmm.

The other option was one that I brought up months ago. The psychiatrist said no because it is similar to Abilify in that it can increase weight and glucose.

He is willing to try it now because I took Travis for lab work last week. The results were astounding. Travis’s A1C went from 11.1% in August to a 7.1%. Ideally it would be under 6%. But this is a vast improvement. His glucose went from 339 in July to 129. Ideally it would be under 100, but again a vast improvement.

Here’s my question. If we believe that taking him off the Abilify resulted in this improvement, why would his doctor want to prescribe a medicine that has a similar effect on weight and glucose as Abilify? A medicine that was a hard no just a few months ago?

So, back to the new psychiatrist. We haven’t broke up with the psychiatrist that Travis has been seeing for years, at least not yet. We are simply getting a second opinion.

I filled out a very detailed questionnaire. I have to get her up to speed as quickly as possible. Travis’s last Haldol injection is wearing off and will be out of his system completely in a matter of days. We met with her together last week. Travis likes her. That is extremely important. She said that it would be helpful if I sent her any evaluations that I might have, as well as his lab work over the last couple of years. I sent her all the information she requested the very next day.

We have another appointment with her on November 23rd. She is aware of the fact that Travis will be off his medications and intends to have a plan of action for him moving forward. We have another appointment with his current psychiatrist on November 24th. If I tell him that Travis doesn’t want to take a pharmaceutical medication, he will close his file. How do I know this? Because anytime I have asked if there is any other treatment available he has replied, I only do medication management. So no medications means I will need to close my file.

Mental health care is atrocious, at least in our experience. Putting on another band-aid is not helping. Yet how does an individual without good healthcare coverage get the mental health help they need?

Things are even worse with the pandemic. Most therapists have a waiting list. Many don’t take Medicaid. Several are still not seeing clients in person. This doesn’t work for Travis. Treatment over Zoom or over the phone simply doesn’t work with his severe lack of attention and focus issues.

While we are making treatment changes, I interviewed someone that I thought could be a good candidate as Travis’s live-in aide. After we visited for an hour and a half on the phone, I had him meet me at Travis’s so that Travis could meet him and give me some feedback.

When the last guy left after just two days, Travis was devastated and told me that he changed his mind about having an aide. The only problem was that I hadn’t changed my mind. I knew his feelings were hurt, but I also knew he would like this guy.

The background check was performed and he passed. He is also agreeable to become an employee with a provider agency so that he can get paid to help Travis with cooking and cleaning.

One of the things I liked about this guy was that he told me that he had suffered from depression in the past. He said it took some time, but he finally decided he would eat better and be more active, and that it helped. A lot. He said that he would prepare healthy foods, and that they would do active stuff together. He had Travis at, “Do you like snowboarding?”

He told me during our phone interview that he wouldn’t preach to Travis. That he would use distraction as a way to help him spend less time sitting and gaming and more time actively doing. Distraction is my go to. When Travis is perseverating on something negative, I use distraction to get his mind thinking about something different.

This guy had me at the cooking healthy, doing active stuff with Travis, and using distraction rather than preaching. Oh, and he said he was happy to help with Sheila!

His plan is to move in by the first of December.

Why am I feeling off kilter? I don’t know what the plan of action is for Travis’s ongoing psychiatric care. I was very honest with the new live-in aide about Travis’s story. But actually seeing Travis in action might be more than this guy has imagined.

The new aide felt confident that Travis would see him as a friend and that he could have some success helping Travis to make better decisions around friendship.

I shared with him that Travis is different and because of that he has been bullied regularly. He also shared with me that because he is Asian American he knows all about being bullied. Which makes my heart hurt. I just don’t understand why bullying happens to anyone.

The new live-in aide mentioned that he had a bout with depression. He mentioned that he was divorced. He had more recently quit his job to become a caregiver for his father who has cancer and also had a stroke. He told me that it is part of the Korean culture to take care of their family, even if it meant quitting his job. He said his aunt recently moved to Colorado and was taking over the bulk of the caregiving. Then he came upon my ad and felt compelled to call.

I’m sure there is more to his story. It sounds like this opportunity will help him to get his ducks in a row. Truth be told, that might be just the kind of person we are looking for. Because if someone already had their ducks in a row, would they be interested in a position of this nature? I’m not so sure.

I did share with the new aide that Travis would be switching to a new waiver in the next few months. I told him that if he and Travis jibe that we would consider him for the provider position where he would get paid a monthly amount to be more available to meet Travis’s needs. With that position, he could still work a full-time job. My hope is that in knowing this he might be more motivated to work hard to make this work. It is also a great opportunity to help him to get back on solid footing.

Keep your fingers crossed and the prayers coming! It’s working, Travis’s last blood work was much better and we found a live-in aide!

Then maybe my ducks will be in a row too! I have this one duck…

“My ducks are absolutely not in a row. At this point, I don’t even know where my ducks are.” - Author Unknown

“I don’t have all, not even some of my ducks in a row. But they’re all in the same pond, so I have that going for me.” - Author Unknown

“If you want to get your ducks in a row, you must first get your head above water.” - Author Unknown

“Always behave like a duck. Keep calm and unruffled on the surface, but paddle like hell underwater.” - Author Unknown