Fighting the Good Fight
Travis is a warrior. He is fighting the good fight in his battle with his mental illness. The battle has been going on for over twenty years. He is tired. We are tired.
Oftentimes I feel like the professionals are just not listening. Maybe it’s because there are so many people battling mental illness today. Are the professionals giving all of their attention to those that are more seriously ill? I believe that it is easy to let Travis slip through the cracks because he has a supportive family.
I feel like it isn’t fair. I get that the professionals are putting out each fire as they come. There is not enough funding. There are not enough psychiatrists and therapists to go around. There are not enough caregivers to be hired.
But I am beginning to crack from the pressure. It must be obvious because I’ve had a couple of situations this past week where a member of Team Travis asked me if I was alright. With the first situation, I couldn’t answer. I was unable to respond because I was fighting to keep it together.
The second time, a different situation and team member, but this time I did respond. No, I am not alright. For years I have said and acted like I got this. But now I am not so sure. Overall, Travis is doing better. I think it is more about me just being worn out.
I had a phone conversation with the case manager about the possibility of Travis moving to the DD (Developmental Disability) waiver from the SLS (Supported Living Services) waiver. He was following up from a previous conversation. The case manager had shared with me that it would be extremely difficult for Travis to move up the list on an emergency basis because he wasn’t in danger of becoming homeless.
I told him that a year ago Travis was number eight on the waitlist. I asked him to check and see where Travis was on the list currently. Travis is now number fourteen on the list. My heart sank. He explained to me how that can happen, and I get it. Individuals that were placed on the list previous to Travis chose not to take the DD waiver when it was offered because they were in a stable living situation. But now they are not. Those individuals get put back on the list, by the date they originally qualified.
I can see how that may happen. The stress of the pandemic. The loss of caregivers.
I also found out that if Travis has a host home provider move into his home, that he will lose his HUD waiver. I am struggling to understand this concept. Travis would not be a good fit to live in a provider’s home. One of the reasons is that he would have to give most of his SSI to the provider for room and board. He would only have about $90 remaining. Meaning that he could no longer have a car. That doesn’t align with his goal of living as independent a life as possible.
Having a provider live in his home is a rare and outside the box solution. But we don’t see how it can work without his HUD voucher. Travis’s SSI wouldn’t cover the lot rent and utilities. I am certain it would be hard to find a provider that would need to kick in for rent and utilities. What if we find that person and they decide after just a couple of months that this position is not for them? But now, Travis no longer has a HUD voucher.
He simply cannot give up his HUD voucher. The waitlist has not been opened for years.
I understand that the case managers didn’t know this detail when we were planning for Travis’s future. His situation is complicated.
The case manager said that when Travis moved to the DD waitlist, he could have a provider for 10-20 hours a week to offer supports. I was confused, because that sounds exactly what he has available to him on the SLS waiver. Only provider agencies are unable to fill the hours because they are understaffed. I asked the case manager if this position would be easier to staff, like did it pay better? Good question.
Travis’s case manager is a SLS case manager. They don’t know the ins and outs of the DD waiver.
I hung up deflated. He asked if I was alright. I couldn’t answer because I was trying to hold it together. I was most certainly not alright.
Travis had an appointment with his primary care physician for his physical. The medical assistant is extremely good with Travis. For this appointment she asked if Travis wanted to do the depression and anxiety self-assessment. I quickly answered that I didn’t think it was necessary, I think that we all know how he is doing with his mental health. (Travis gets spun up during assessments because it reminds him of all the areas he has struggles.)
Travis said it was his appointment and he wanted to do it. (Oh no.) From his perspective I was being controlling. That I was once again making a decision for him. He doesn’t understand that I am trying to protect him from getting worked up. And he did. Like I knew he would. Let’s call it, experience. Lots and lots of experience.
I found the assessment questions online. They are available on several different websites. The answers are nearly every day, more than half the days, several days, not at all. You are supposed to consider how you felt over the last couple of weeks.
How often have you been bothered by feeling down, depressed or hopeless?
How often have you had little interest or pleasure in doing things?
How often have you been bothered by trouble falling asleep or staying asleep, or sleeping too much?
How often have you been bothered by feeling tired or having little energy?
How often have you been bothered by poor appetite or overeating?
How often have you been bothered by feeling bad about yourself, or that you are a failure, or have let yourself or your family down?
How often have you been bothered by trouble concentrating on things, such as reading the newspaper or watching television?
How often have you been bothered by moving or speaking so slowly that other people could have noticed, or the opposite - being so fidgety or restless that you have been moving around a lot more than usual?
Have you had an anxiety attack (suddenly feeling fear or panic)? Yes or no.
How often have you been bothered by feeling nervous, anxious or on edge?
How often have you been bothered by not being able to stop or control worrying?
How often have you been bothered by worrying too much about different things?
How often have you been bothered by having trouble relaxing?
How often have you been bothered by being so restless that it is hard to sit still?
How often have you been bothered by becoming easily annoyed or irritable?
How often have you been bothered by feeling afraid as if something awful might happen?
Have you been bothered by worrying about any of the following: your weight or how you look, little or no sexual desire or pleasure during sex, difficulties with your partner, the stress of taking care of family members, stress at work or school or outside the home, by financial problems or worries, having no one to turn to, something bad that happened recently?
If this questionnaire has highlighted any problems, how difficult have these problems made it for you to do your work, take care of things at home, or get along with other people? Not difficult at all, somewhat difficult, very difficult, extremely difficult.
The results give you a depression score and an anxiety score based on the responses given. Not at all - 0; several days - 1; more than half the days - 2; and nearly every day - 3.
I’m sure you can guess that Travis’s score was high. He became extremely agitated. He hates his weight and how he looks. He is never going to have a partner that loves him, let alone sex. He wants to work but keeps getting fired, and for no good reason. He wants to go to college, but we won’t allow it. (Not true.) He has no one to turn to. (Deep sigh.) Bad things happen to him all the time.
And it was all our fault. (Me and Tracy.) The doctor walked in during this process and got to witness the tirade. And my exasperation. I can only hope that they learned something from this experience and marked his file accordingly.
We talked about the lab work that the psychiatrist ordered so that the family physician could add what he needed. I shared my concern that the psychiatrist may take Travis off his new medications based on the lab results. I told the doctor that he had made a referral to a new psychiatrist twice but that we never heard from their office. I asked the doctor what happens if the current psychiatrist refuses to refill a medication that the psychiatric hospital prescribed?
Most times when I take Travis to see his primary physician, he is in a better place. But the last few times haven’t gone well. On top of that, I’m guessing that the doctor read the file from the emergency room visit and my refusal to agree to take Travis home. I sent him an email to let him know about the ten-day hospital stay and change in medications.
Maybe it was because of all of these things. Maybe it’s becoming obvious in my demeanor or body language. But I did receive a call from the referral to the new psychiatrist and set up an intake appointment for Travis in July. And I received a call from that manager of the social work department of the medical office. She asked if I was alright, and I said no, I am not alright. We talked for an hour, and I felt heard. She put a couple of things on her to do list. She put a couple of things on my to do list.
Until next time…
“You’re a warrior, warriors don’t give up and they don’t back down. Pick up your sword and shield and fight.” - Curiano.com
“It’s in the difficult times that we’re growing, and you can’t just rebuke everything hard. We’ve got to endure it and fight the good fight of faith and pass the test.” - Joel Osteen
“Sometimes I wonder is all of this is happening because I didn’t forward that email to 10 people.” - Author Unknown