An “A Ha” Moment

Last week I wrote about having just survived a tough week of caregiving. Thank you to all of you that reached out to me to offer your love and support. It really does make a difference.

This week I thought I would take you through my typical week of caregiving, so that you can better imagine why my bucket might end up being so dry.

You may remember that Travis had his tonsils and uvula removed this past July. He had been diagnosed five years ago with sleep apnea. He did try unsuccessfully to use a CPAP. I took him to the medical supply center several times, so that they could fit him for different masks. He had a couple of different issues trying to adjust to wearing the mask when he slept. One was most likely sensory related. He just couldn’t get used to the feeling of the mask on his face. The mask also irritated his skin. Travis has skin issues that we have never been able to get a handle on. He has very sensitive skin and suffers from some sort of eczema or other skin disorder. His face ended up with some sort of rash along the mask line.

In addition to that, Travis stays up late playing video games. He would oftentimes fall asleep in his recliner. Eventually he would wake up and stumble to bed. Forgetting to even use his CPAP. The CPAP machine talks directly to Medicaid. Medicaid stopped covering the supplies because he was not meeting their usage guidelines.

Travis did not properly clean the equipment. Cleanliness and hygiene are not his strong points. I wondered at the time if his constant bronchitis was somehow related to using the mask without cleaning it daily. If Travis lived at home, I would have helped him with the process of using and cleaning the CPAP. I did nag him to keep trying, but I eventually gave up.

Fast forward to 2020. Travis’s doctor orders bloodwork regularly. Irregularities in the results led the doctor to believe that Travis was not getting enough oxygen. The doctor asked me to take Travis back to the ear, nose and throat (ENT) specialist. The ENT wanted Travis to do a sleep study. I reminded him that we did that through his practice five years ago and Travis was diagnosed with severe sleep apnea. I also reminded him that Travis was unsuccessful adapting to the CPAP machine and stopped using it.

Thus, the tonsil and uvula removal. The doctor had hoped this would increase Travis’s oxygen levels. After Travis recovered from his surgery he completed another sleep study. This time instead of completing it in the sleep lab, we had to do an in-home sleep study. Thanks Covid-19. We of course had him do the study in our home.

This time the results came back as mild to moderate sleep apnea. The next step was to make an appointment with a pulmonologist. His first opening was three months later. Thanks again Covid-19. I attend all of Travis’s doctor appointments with him. There is just no way he could remember to tell them what they need to hear, and no way he would remember their instructions. The pulmonologist wanted to prescribe a CPAP. I shared Travis’s story about his last CPAP experience.

I always find a way to throw in his autism spectrum diagnosis without making a big deal about it. I said something like, “I think part of the reason he had so much trouble adapting to wearing the mask is because he has a sensory disorder, likely due to his autism diagnosis. I did see an immediate change in the pulmonologist’s demeanor that included more patience and less exasperation over getting used to using a CPAP.

Travis was able to share some good information about feeling claustrophobic when the air was being forced. The pulmonologist decided to prescribe a BIPAP. I don’t completely understand the difference, something about this machine only gives air when you are actually breathing in and let’s you breathe out normally.

The supplier company reached out to me and asked if Travis had tried a CPAP during his recent sleep study. I said no, the study was an at home study. I did share that he had tried the CPAP a few years ago. The representative shared with me that Medicaid would require another sleep study with Travis trying a CPAP before they would pay for a BIPAP. Sometimes I just have to shake my head. I asked her to reach out to the pulmonologist for direction. I wasn’t going to be the one that took on this battle with Medicaid. I mean between waiting on hold, and actually getting someone that knew what they were talking about? Not gonna do it.

I don’t know what happened behind the scenes, but a week or so later the supply company called back to make an appointment for a BIPAP fitting. Whenever possible I set any appointment that Travis is going to need support with on Tuesdays. I spend Tuesdays with Travis bringing him to his appointments, shopping, filling his gas tank, banking and doing whatever other errands are necessary.

Last Tuesday was Travis’s fitting at the medical supply office. I did my thing, I mentioned that Travis was on the autism spectrum as part of the conversation. The respiratory therapist took the time to show Travis how the equipment worked, and how to take it apart and put it back together. He wanted to give Travis a sheet with directions, and Travis asked if he could use his phone to video the process so that he could watch it that night when it was time to set the BIPAP up.

I shared with the therapist that Travis learned best not by reading, but hands on. The therapist had Travis complete the process himself so that he might remember it better. I’m sure the appointment went longer than planned, but the therapist was very patient. He wanted to give Travis his business card just in case Travis was having any issues. Travis asked him to put his number in his phone instead. The therapist asked Travis to call him in the next day or two to let him know how it was going. Travis said he wouldn’t remember to call, and asked the therapist to call him in a day or two instead.

I was impressed. My boy is starting to recognize how to meet his own needs. This was an “a ha” moment for me. Because after my rough caregiving week, I had decided I need to come up with a plan to be less available. And now the jig is up. I’m beginning to see through his ruse, he is becoming more capable. He may be leaning on me out of habit. It’s time to set some new boundaries.

On Wednesday I received an email from the Division of Vocational Rehabilitation. They processed Travis’s intake paperwork and want to set up a meeting. I wish when they are simply wanting to set up an appointment they didn’t encrypt the email. The last counselor never sent an encrypted email. But surely I already have an account with the State of Colorado. I tried my three most common variations of my password before I gave up and hit forgot password. Eventually I did get to read the one sentence email. Got a Zoom meeting set up in Travis’s calendar. Which I will, of course, need to attend.

On Wednesday I also needed to complete my annual SSI Representative Payee report. Once each year I have to account for how Travis’s SSI was spent. I have been completing this report for nine years now. Only this year they decided to change how to get to the report. They send a paper report, but they include instructions how to complete the report online. Which is how I always do it.

In the past I would go to the Social Security Administration website and click the Rep Payee report button. It would ask for a code, and once that was entered Travis’s report would come up and I filled in the blanks. I finally figured out that I now need to go to my personal Social Security page and it has Travis’s form there.

Once I was done with the report, I went on to my next Travis task. On Tuesday the respiratory therapist had given me a form with the company name and number that will be sending Travis’s monthly BIPAP supplies. The therapist told me to call the company to get Travis set up on an automatic monthly shipment. I did some filing while I was on an indefinite hold. I was unable to set up an automatic shipment for Travis because Medicaid doesn’t allow it. The representative did put in a preorder for December supplies. The representative did tell me that the company would call me in a month when the next order needs to be placed. That is nice of them to do that, but you know what? I mark the date in my calendar, because I do not have blind faith.

On Thursday I got online into Travis’s health record so that I could set up a follow up appointment with the pulmonologist. Medicaid requires this appointment between the second and third month after beginning the BIPAP machine. If the appointment isn’t kept, Medicaid will no longer pay for the use of the BIPAP or the necessary supplies.

I received an email from the job coach that worked with Travis at Spirit Halloween. He had an interesting conversation on the phone with Travis and he wanted to touch base with me about it. He is new to Team Travis. And I think new to working within the intellectual/developmental disability care system. So I spend the next hour writing an email to catch him up to speed. I forward this email to Travis’s psychiatrist and therapist.

Keep in mind that during my constant advocacy for Travis I am constantly receiving calls from Travis. The respiratory therapist called Travis to see how he was doing with the BIPAP machine. Travis dialed me into the call because he told the therapist that he was having issues with the mask. This time around they fitted him with a nasal mask. This is a much smaller mask and it covers just the nose area and not the mouth. Travis needed me to be part of the call because the therapist wanted to schedule an appointment for Travis to come back in.

Travis really struggles keeping a calendar. I hung a large white board calendar on his freezer door. It is the size of the entire door. As often as Travis opens his refrigerator, I thought he couldn’t possibly miss the calendar. I write all of his scheduled appointments on the calendar. But for some reason he just doesn’t use it. Some things are programmed into his phone. His therapist sends him a text reminder before his appointments with her. Which are no longer in person appointments. Thanks again Covid-19.

It does make sense for Travis to call me to help set the appointment. The therapist wanted to see him the following week, on a Thursday. Travis asked me if we needed to set it up on a Tuesday, or would I come back into town to take him on a Thursday. I shared with Travis that it was not necessary for me to attend this appointment. They were going to try different masks on him. He was capable of handling this appointment on his own.

I marked the appointment in my calendar. I will write it on his white board. I will need to call him on Thursday and remind him. Still, this is a step in the direction of taking care of himself.

On Friday our bank emailed our bank statements. I printed Travis’s two statements and attached all the receipts I had for his representative payee account. I make a copy of the receipts because they have a tendency to fade. I have to be able to prove that all of the money in that account is spent on meeting Travis’s needs. I also decided to take the time to break down Travis’s spending habits into categories. I know the amount he spends on rent and food, because SSI requires those numbers. But then I just had a category called personal.

I decided that it may help him to see how much he is actually spending on his Xbox habit. He calls and asks for money for Xbox a lot. I think he may be to a point where he can better understand how $5 here and $5 there really adds up. I also decide he should know how much he is spending on cigarettes. I prepare some numbers so that I can present my findings to him in person. Please know that I have been trying to teach him about budgeting for years. I’m hoping that with his recent growth in some areas, maybe he’ll understand more this time around.

Travis seems to be doing better this week. In the interest of setting boundaries, I told him that I would be turning my phone off each night at 8pm. That is around the time I start settling in for the night. Even though Travis knows this, he calls me after 8pm regularly. Or after 9pm. Or 10pm. Often he starts by saying, “Sorry to wake you but can I get some money for (fill in the blank)”. He is a night owl. So he might be out with his friends and he wants to get something to eat. Or a friend needed a ride to Walmart. He wants money for some various, needless object.

I tried to teach Travis for years and years that an apology doesn’t include the word but. Sorry to wake you, but. I try to explain to him that it’s hard for me to believe that he is truly sorry, because he does it again and again.

I tried the turning off the phone thing before. Somehow I ended up not following through. I think I got up one morning and turned it on and I had several messages and missed calls for some type of crisis. I’m sure I felt guilty.

So far, so good this time around.

Tracy took Travis out to lunch for pizza and had a conversation about the dog. The dog, the dog, the dog! Travis had a bit of a meltdown and walked out of the restaurant. He called me and said he was walking home. Tracy packaged up their pizza and picked him up. Don’t worry. We’re used to this. Tracy was able to calm Travis down pretty quick.

He called me about the dog today. This conversation has been going on for years. But today when I said no to this particular dog, he asked me what breeds would be good for him to have at his mobile home park. And how soon could he get one. I’m back to wavering. If any of my local readers know of an available dog…

Tomorrow is Travis Tuesday. We both have a teeth cleaning appointment. I found a dentist that takes his Medicaid and my insurance. That has a practice big enough that they can do both cleanings at the same time. This is important. This dentist is very good about taking care of any needs that may come up for Travis during this same appointment. He understands how difficult it is for me to get Travis there. Dental appointments can be extremely hard for individuals on the autism spectrum.

I also want to make sure his teeth are in the best possible shape because he could lose his dental coverage. Medicaid didn’t cover dental work until the Medicaid expansion under the Affordable Care Act. There has been some question about how long the Affordable Care Act might be around.

I remember when I worked at a provider agency. All of our clients had intellectual/developmental disabilities. They all had Medicaid for their insurance. Many had gone without dental care for years. For some it had been since their parent’s insurance no longer covered them. Depending on their age, that could be a very long time ago. Every so often a dentist in the area would have a day where they gave free care. We would try to get the clients with the greatest need into those appointments.

Travis also has a psychiatrist appointment tomorrow. I will bring my laptop to his house and get the Zoom meeting set up. I attend these appointments because they include medicine management.

Looks like I received a check-up reminder card in the mail. Time to make Travis’s appointment with the eye doctor. Now that he has diabetes I need to make sure this is done timely each year.

This is a typical week. Of just Travis.

As a CASA, I prepare court reports and make recommendations to the judge about the needs of my CASA kiddos. I attend every court hearing. I meet with their teachers, doctors, therapists and foster parents. My current kiddo is on an IEP, so I attend and advocate for her needs at each IEP meeting. I meet with my kiddo once per week. We did have to go back to video chatting a couple of weeks ago.

Did I say thanks Covid-19 yet? It certainly has changed our lives, hasn’t it?

Before I know it, a whole week has passed. It’s Monday night. I finally sit down to write my blog.

“What is an “a ha” moment? It is a moment of clarity, a defining moment where you gain real wisdom - wisdom you can use to change your life. Whether big or small, funny or sad, they can be surprising or inspiring. Each one is unique, deeply personal, and we think, worth sharing.” - Author Unknown